Doctoral Thesis – Nordic School of Public Health, Göteborg, Sweden 2010
LIVING WITH HEAD AND NECK CANCER: A
HEALTH PROMOTION PERSPECTIVE
– A Qualitative Study
Margereth Björklund
LIVING WITH HEAD AND NECK CANCER: A HEALTH
PROMOTION PERSPECTIVE – A Qualitative Study
Margereth Björklund
Being close to nature works wonders with the soul (Tomas Sjödin)
Doctoral Thesis – Nordic School of Public Health, Göteborg, Sweden 2010
LIVING WITH HEAD AND NECK CANCER: A HEALTH
PROMOTION PERSPECTIVE – A Qualitative Study
© Margereth Björklund
The Nordic School of Public Health
Box 12133
SE-402 42 Göteborg
Sweden
www.nhv.se
Print: Intellecta DocuSys AB, Västra Frölunda, Sweden
ISBN 978-91-85721-93-1
ISSN 0283-1961
Photos: Göran Björklund, Britta-Lena Engström, Inger Olsson, Siv Radomski
and Gunnar S. The artist Gunvor Johansson painted the portrait.
ABSTRACT
Background and aim: In society there is a growing awareness that a vital factor for patients
with chronic diseases, such as head and neck cancer (HNC), is how well they are able to
function in their everyday lives – a common, but often overlooked, public health issue. The
overall aim of this thesis is to reach a deeper understanding of living with HNC and to
identify the experiences that patients felt promoted their health and well-being. It also
explores the patients’ experiences of contact and care from health professionals and whether
these encounters could increase their feelings of health and well-being; salutogenic approach.
Methods: This thesis engages a qualitative data design. On three occasions, 35 purposively
selected patients were interviewed (31 from Sweden and one from Denmark, Finland, Island,
and Norway). The first study was conducted in the Nordic counties (I), and the remaining
studies were conducted in Sweden (II, III, IV). Interviews were performed on a single basis
(I, II, III) and then repeated (IV). The individual, semi-structured qualitative interviews used
open-ended questions (n=53). Three different forms of analyses were used: critical incident
technique (I), thematic content analysis (II), latent content analysis (III), and interpretative
descriptive analysis (paper IV).
Findings: Living with head and neck cancer was expressed as living in captivity, in the sense
that patients’ sometimes life-threatening symptoms were constant reminders of the disease.
The patients experienced a threat against identity and existence. Patients struggled to find
power and control over everyday life, and if successful this appeared to offer them better
health and well-being along with spiritual growth. The general understanding was that these
patients had strong beliefs in the future despite living on a virtual rollercoaster. The patients
went through a process of interplay of internal and external enabling that helped them acquire
strength and feelings of better health and well-being. Consequently, they found power and
control from inner strength and other health resources, e.g. social networks, nature, hobbies,
activity, and health professionals. However, the findings also revealed the opposite; that some
patients were more vulnerable and felt powerless and faced everyday life with emotional and
existential loneliness. They were dependent on next of kin and health professionals. Having
good interpersonal relationships and emotional support 24 hours a day from next of kin were
crucial, as were health promoting contacts and care from health professionals. This health
promoting contact and care built on working relationships with competent health
professionals that were available, engaged, respectful, validating, and, above all experienced
in the treatment phase. But many patients experienced not health promoting contact and care –
and a sense of not being respected, or even believed. Added were the patients’ experiences of
inadequate coordination between phases of their lengthy illness trajectory. They felt lost and
abandoned by health services, especially before and after treatment.
Conclusions: Inner strength, good relationships with next of kin, nature, hobbies, and
activities could create strength and a sense of better health and well-being. Patients
experienced a mutual working relationship during dialoguing and sensed co-operation and
equality in encounters with competent health professionals. This could lead to enhanced
power and control i.e. empowerment in a patient’s everyday life. The findings highlight
psychosocial rehabilitation in a patient-centred organisation when health professionals support
patients’ inner strength and health resources, and also offer long-term support to next of kin.
Finally, this research suggests that if health professionals could gain a deeper understanding
of the psychosocial, existential, social, and economic questions on patients’ minds, they could
better sense how patients feel and would be better equipped not only to offer greater support,
but to raise their voices to improve health policy and health care for these patients.
Key words: Head and neck cancer, public health, health promotion, empowerment, qualitative
methods, everyday living, nursing. Doctoral Thesis – Nordic School of Public Health, Box 12133,
SE-4022 Göteborg 2010. E-Mail: [email protected]
SVENSK SAMMANFATTNING
Syfte och bakgrund: Avhandlingens övergripande syfte var att få en djupare förståelse för
personer med huvud – halscancer vardagsliv samt vad som främjar deras hälsa och
välbefinnande d v s ett salutogent synsätt. Kroniska sjukdomstillstånd såsom cancer räknas
numera till de stora folksjukdomarna och vid huvud – halscancer är vikten av ett fungerande
vardagsliv emellertid ett ofta förbisett folkhälsoproblem.
Metod: Avhandlingen omfattar fyra delarbeten baserade på kvalitativa data. Resultaten
baseras på semistrukturerade individuella intervjuer (n=53) som riktades till 35 utvalda
personer. Den första studien (I) genomfördes i Danmark, Finland, Island, Norge och Sverige
och de övriga i Sverige (II, III, IV). Intervjuerna genomfördes vid ett tillfälle (I, II, III) och
vid upprepade tillfälle (IV). Tre olika textanalyser användes, kritisk händelse teknik (I),
tematisk innehålls analys (II), latent innehållsanalys (III) och tolkande beskrivande analys
(IV).
Resultat: Att leva med huvud - halscancer beskrevs som ett liv i fångenskap och upplevdes
som att åka i berg och dalbana mellan hopp och förtvivlan. De ofta livshotande symtomen
påminde ständigt om sjukdomen och upplevdes som hot både mot existensen och mot
identiteten. Detta till trots kom ibland en stark optimism och tro på framtiden till uttryck.
Några av de intervjuades vardagsliv präglades dock av känslomässig och existentiell
ensamhet och upplevelser av sårbarhet och maktlöshet. Att ha makt och kontroll över den
egna livssituationen liksom närståendes känslomässiga stöd, ibland dygnet runt, främjade
hälsan. Hälsofrämjande kontakter med vårdpersonalen upplevdes främst under sjukhus
vistelsen. Avgörande var en god och bekräftande patient vårdar relation samt att personalen
hade hög kompetens och visade engagemang och respekt i vårdsituationen. Flera av de
intervjuade beskrev dock allvarliga brister i kontakten med sjukvården. Upplevelser av brist
på respekt och att inte bli trodd i sin sjukdomsupplevelse beskrevs, vilket vanligast i
perioderna före och efter sjukhusvistelsen. Samordningen mellan hälso- och sjukvårdens olika
funktioner upplevdes som bristfällig under hela sjukdomsförloppet.
Konklusion Inre styrka, goda relationer med närstående, nära kontakt med naturen, hobbyer
och andra aktiviteter skapade upplevelser av hälsa och välbefinnande hos personer med huvud
- halscancer. I dialog med kompetent vårdpersonal, där samverkan och jämlikhet var tydlig,
upplevdes ömsesidiga, vänliga relationer som en hjälp för dem att få ökad egenmakt och
kontroll i vardagslivet. Resultatet visar på patienternas långvariga kamp med ett vardagsliv
med ständig känslomässig, psykosocial, existentiell, social och ekonomisk oro. Resultatet
pekar också på en brist på patientcentrerad organisation och psykosocial rehabilitering, där
vårdpersonal stödjer patienters inre styrka och hälsoresurser. Förhoppningen är att resultatet
kan leda till en ökad förståelse hos vårdpersonal för hur vardagslivet kan upplevas då man har
en huvud- hals cancer, för att på så vis ge adekvat hjälp till dessa patienter och deras
närstående.
Nyckelord: Huvud - halscancer, folkhälsa, hälsofrämjande, egenmakt, kvalitativa metoder,
levda erfarenheter, omvårdnad.
Doktorsavhandling i folkhälsovetenskap vid Nordiska högskolan för folkhälsovetenskap,
Box 12133, SE-402 42 Göteborg; 2010. E-post: [email protected]
ORIGINAL PAPERS
This thesis for the degree of doctor in public health is based on the following
papers, referred to in the text by their Roman numerals:
I
Bjorklund M, Fridlund B. (1999). Cancer patients’ experiences of
nurses´ behaviour and health promotion activities: a critical
incident analysis. European Journal of Cancer Care, 8 (4), 204-212.
II
Björklund M, Sarvimäki A, Berg A. (2009). Health promoting
contacts as encountered by individuals with head and neck cancer.
Journal of Nursing and Healthcare of Chronic Illness, 1 (3), 261268.
III
IV
Björklund M, Sarvimäki A, Berg A. (2008). Health promotion and
empowerment from the perspective of individuals living with head
and neck cancer. European Journal of Oncology Nursing, 12 (1), 2634.
Björklund M, Sarvimäki A, Berg A. (2010). Living with head and
neck cancer: a profile of captivity. Journal of Nursing and
Healthcare of Chronic Illness, 2 (1), 22-31.
All papers have been reprinted with the kind permission of the publishers.
ABBREVIATIONS & ACRONYMS
HNC
-Head and Neck Cancer
NHPH
-International Network of Health Promoting Hospitals
IOM
-Institute of Medicine
LU
-Lund University
SSF
-Swedish Nurses Association
NCCDPHP
-National Center for Chronic Disease Prevention and
Health Promotion
NIPH
-National Institute of Public Health, Sweden
NNF
-Northern Nurses Federation
NPH
-Nordic Public Health
SBU
-Swedish Council on Technology Assessment in Health Care
SWEDPOS
-Swedish Society for Psychosocial Oncology
WMA
-World Medical Association
WHO
-World Health Organization
CONTENTS
PREAMBLE
1
INTRODUCTION
1
BACKGROUND
2
Public Health and head and neck cancer
2
Head and neck cancer
3
Everyday life with head and neck cancer
6
Health
8
Health promotion
9
Other related concepts
11
Rationale of the study
12
AIMS
13
Specific aims
13
METHOD
13
Design
13
Study context
14
Participants
15
Interviews
17
Interview process
18
Text analyses
18
Critical incident technique (paper I)
19
Qualitative content analysis (papers II, III)
19
Interpretative descriptive analysis (paper IV)
20
The author’s pre- understanding
21
ETHICAL CONSIDERATIONS
22
Principles of respect for autonomy
22
Principles of beneficence and non-maleficence
23
FINDINGS
24
Living with head and neck cancer
27
Experiences of what promotes health and feelings of well-being 29
Ability to reach internal enabling
29
Ability to reach external enabling
29
Experiences of hindrances to health and feelings of well-being
31
Lack of ability to reach internal enabling
31
Lack of ability to reach external enabling
32
DISCUSSION
33
Methodological considerations
42
CONCLUSIONS
50
IMPLICATIONS FOR HEALTH PROMOTION
51
FURTHER RESEARCH
52
SVENSK SAMMANFATTNING/ SWEDISH SUMMARY
ACKNOWLEDGEMENTS
54
59
REFERENCES
62
APPENDICES
Appendix 1. Patient information delarbete I, Sverige
Appendix 2. Patient information delarbete II, III
PAPER I-IV
NHV Reports
Preamble
Through my former work as registered nurse in an ear, nose, and throat clinic I
met many patients who faced a mix of challenges from head and neck cancer
(HNC) tumour growth and the side effects of treatment. With help of
medication, treatment, health resources, and other solutions they regularly, after
a time, felt better and looked ahead. I was impressed by the patients’ willpower
to look forward despite their unfolding ill health and its accompanying
problems, e.g. breathing, eating, bleeding, and speaking complications. This
sparked my interest and curiosity to learn and understand more about the
implications of living with HNC and to identify the experiences that patients felt
promoted their health and well-being when captured in this vulnerable life
situation. This quote is from a woman aged 55, narrating her experience of being
in a vulnerable situation during hospitalization with valuable health
professionals’ encounters:
If you give a person…unexpected attention, I think you save
a lot of work... for yourself and in answering many questions from
patients...just say, ‘I have a few minutes and thought I would spend
them with you’...it’s the easiest way to reach people...yes, I think
they neglect the person in health care, and that’s deadly…
Introduction
This thesis aims to reach a deeper understanding of living with HNC and to
identify the experiences that patients felt promoted their health and well-being.
Furthermore, it conveys the patients’ experiences of care and contact with health
professionals, and examines whether these encounters could increase patients’
feelings of better health and well-being. The intent has been to place this area
under discussion in the sphere of public health and health promotion since an
increasing number of people are now living with chronic HNC (Parkin et al.,
2005; Syrigos et al., 2008). Hence, the implications are a heavy illness burden
for patients and their next of kin and a continuing need for access to services and
support from health care and society.
1
Background
Public health and head and neck cancer
All definitions of public health share a common aim, i.e. to reduce disease and
maintain health (Beaglehole & Bonita, 2001). Public health, in addition to
addressing the efficacy of health and medical care is an interdisciplinary area
involving social structure, working life, environment, and the care system
serving the population’s health (ibid.). In the nineteenth century public health
(i.e. the old public health approach), sought changes in the physical environment
and point at e.g. education of personal hygiene, and development of social
standard of living sufficient for preservation of health, additional infection
control, medical and nursing services for early diagnosis and preventive
treatment of disease (ibid).
In the mid 1970s, the movement towards a new public health approach pursued
changes in economic, political, social, and environmental conditions believed to
enhance health. This new public health approach emphasises the collective
responsibility for health while protecting and promoting the public’s health, with
attention to partnership, prevention, and a multidisciplinary basis for action. The
topics are causal, socioeconomic determinants of health and disease, in addition
to more proximal risk factors. These determinants of health – i.e. our life
circumstances linked not only to living with illness, genetic disorders, or other
disease, are linked also to income, educational status, and not least to social
relationship with others (ibid.). All of these factors seem to motivate connecting
public health research to individuals and groups living with HNC. Further, it is
not uncommon that the location of the tumour and the side effects of treatment
(surgery and radiation) often result in permanent, visible disfigurement, and
those affected could experience this as a social disability (Vickery et al., 2003).
Visible disfigurement is known to be associated with extensive psychosocial
difficulties, considering the face is the initial focus in encounters and central to
verbal and non-verbal communication (Rumsey et al., 2004). This
inconvenience could be amplified since society attaches tremendous importance
to physical attractiveness, and visible deformity, particularly of the face and
neck, can be difficult to disguise (Feber, 2000). Dropkin (1999) points out that
even a brief glimpse of the affected person informs the viewer of a difference
from standard appearance. Additionally, these individuals often have poor
speech and might avoid social contact, often restricting them to a close circle of
friends and relatives (Rumsey et al., 2004).
2
In Sweden, the National Institute of Public Health (NIPH, 2003) has stipulated
specific objectives for public health by highlighting people’s participation and
influence in health care and society. These objectives correspond to those in
other Nordic countries as regards principles guiding public health towards more
health promoting health and medical care (Nordic Public Health [NPH], 2009).
There is also general agreement on strategies, e.g. regarding the public’ s
economic and social security, healthier working life, improved physical activity,
reduced use of tobacco and alcohol, safe environments, good eating habits, and
safe food products (NIPH, 2003). When an individual contracts an HNC disease
he/she always shoulders the primary responsibility for personal health. If he/she
is too sick, the responsibility shifts to the next of kin. Finally, the responsibility
shifts to society. On the individual level, public health aims to promote health
and enhance comfort for those groups and individuals that are most vulnerable
to ill health (cf. Krantz, 2002). Patients with HNC search for relief and health
resources when they experience long-lasting feelings of ill health (cf. Bjordal et
al., 2001). However, it appears to be problematic for them to achieve better
health and well-being since they live constantly with chronic problems, e.g.
eating and swallowing disorders that accompany their increasing age.
Head and neck cancer
HNC is comprised mainly of squamous cell and adenocarcinoma and includes
cancer of the lip, tongue, salivary gland, mouth, pharynx, oropharynx,
nasopharynx, hypopharynx, nose, sinuses, thyroid, ear, and larynx (Anniko,
2006). HNC is most common in people aged >50 years, and the percentage of
elderly patients is rising due to the increasing lifespan (Syrigos et al., 2008).
HNC presents different aetiologies and pathology, but tobacco and alcohol use,
particularly in combination, are known risk factors (Talmi, 2002). The pattern of
HNC is not the same for both sexes, e.g. women have a three to four time
greater chance for thyroid cancer than men have (Lope et al., 2005). In contrast,
cancer incidence in the tonsils has increased threefold in men since the 1970s
(Gillison, 2008). Some authors judge these results as an indication of an
epidemic of virus-induced carcinoma, since nearly all tonsil cancer originates
from a human papilloma virus infection of the mucosa (Näsman et al., 2009;
Andrews et al., 2009).
HNC is the fifth most common cancer in the Nordic countries. The annual
incidence (i.e. new cases) of this cancer is increasing, and its prevalence reflects
a long-term survival rate (Parkin et al., 2005). However, the incidence of HNC
varies amongst the Nordic countries, representing from 1.5% to 5% of all
malignant tumours, i.e. around 4500 individuals receive this diagnosis annually
(Parkin et al., 2005). Table 1 presents an overview of the annual incidence
during 2007 and the prevalence of HNC in the Nordic countries.
3
The reported total prevalence is not recognised as the most appropriate figure
since many of the patients are cured and not included as a cancer patient by the
health services. For that reason, 5-year prevalence is also described. In total,
50% of the patients survive 5 years following diagnosis. This is a high survival
rate compared to other cancer diseases (Parkin et al., 2005). Yet the 5-year
survival rate could vary from 50% to 90%, depending on tumour location, size,
and stage (Anniko, 2006). The survival rate has increased in recent decades due
to the many advances in surgery and developments in combining radiation
therapy and chemotherapy (Zackrisson et al., 2003; Caglar & Allen, 2007;
Jackson et al., 2009). These findings correspond to other cancer research
showing that advancements in cancer research have reduced the risk of cancer
death across the life span. Therefore, cancer should be recognised as a chronic
illness (Kort et al., 2009).
Table 1 Overview of annual incidence (i.e. new cases) and
prevalence of HNC in the Nordic countries
Incid Men Women
ence
2007
1)
Denmark n=
n=
n=
(Population 823 553 270
5.5 million)
Total Men Women
preval
ence
n=
n=
n=
10 094 5914 4180
5-year Men Women
preval
ence
n=
n=
n=
8930 5381 3549
Finland 2)
(Population
5.3 million)
Iceland 3)
(Population
0.3 million)
n=
n=
1432 831
n=
601
n=
n=
n=
15 048 7545 7503
n=
5464
n=
46
n=
27
n=
636
n=
528
n=
12 362
both
sexes
n=
n=
n=
6032 3675 2358
n=
570
both
sexes
n=
2534
both
sexes
n=
3796
n=
19
Norway 4) n=
n=
(Population 1259 731
4.7 million)
n=
194
n=
442
n=
n=
2711 2753
Sweden 5) n=
n=
n=
n=
n=
1849 1847
(Population 1129 582 547
9.3 million)
1)
Cancer Registry of Denmark (2009) 2) Cancer Registry of Finland (2009)
3)
Cancer Registry of Iceland (2009) 4) Cancer Registry of Norway (2008)
5)
Cancer Registry of Sweden (2009).
4
Traditional, Western medicine that follows oncology guidelines is used in
treating HNC in Denmark, Finland, Island, Norway, and Sweden (cf. Lind et al.,
2001; WHO, 2002). Detailed information on individual treatment plans was not
obtained from the 35 participants interviewed for this thesis. Treatment is based
on clinical factors, i.e. histological diagnosis, primary site, tumour size and
spread, likelihood for total surgical resection, and potential to save speech and
swallowing functions (Westin & Stalfors, 2008). Additional factors are patients’
wishes, cooperation, physical function, social status, education, experience, and
physician qualifications (ibid.). However, since the planning of a patient’s care
always involves a multidisciplinary team of health professionals, it could be
difficult for the patient to sort out all these different care activities (Gil & Fliss,
2009).
Radiotherapy is standardised with 60 to 68 Grey given once or twice a day, 5
days a week, for 35 to 50 days (Rose-Ped et al., 2002). However, twice-a-day
radiotherapy could limit a patient’s options for ambulatory treatment and require
a stay of weeks or months in a patient hotel or hospital ward. Nevertheless,
continuous advancements in radiotherapy are allowing clinicians to target only
the diseased tissues, i.e. intensity modulated radiotherapy (Caglar & Allen,
2007), resulting in fewer side effects compared to previous therapy (Grégoire et
al., 2007). Likewise, chemotherapy has also advanced, i.e. before 1992
chemotherapy was used only to some extent as introductory treatment before
surgery and/or radiotherapy (Gibson & Forastiere, 2006). Today, chemotherapy
can be used as both curative and palliative treatment, or as an integral part of
radiotherapy, with drugs given 5 days on three or more occasions (Choong &
Vokes, 2008). Several chemotherapeutic agents and targeted therapies, e.g.
antibody treatment with different toxicity profiles, are also available (Gold et al.,
2009).
These treatments offer cure and/or palliation for patients, but also have side
effects such as acute breathing or bleeding problems. In addition to long-term
changes with swallowing and/or communication, this could cause psychosocial
and existential problems for patients (Anderson & Franke, 2002; Larsson et al.,
2003; Happ et al., 2004). In recent decades, services for patients’ emotional and
practical needs related to support, care, and knowledge have been available at
ear, nose, and throat clinics (Larsson et al., 2007; Wiederholt et al., 2007; Wells
et al., 2008). But these clinics are not easily accessible to everyone with HNC.
Access could be complicated for some patients since they often need acute
support when experiencing harsh side effects of treatment. Some authors have
shown that access to health care can be difficult (Tandon et al., 2005).
Frequently, patients then try to find additional treatment known to be health
promoting in people with cancer (Molassiotis et al., 2006; Hök, 2009). This
treatment is often referred to as complementary and alternative medicine.
5
However, the use of complementary and alternative medicine and traditional
medicine is context-dependent (WHO, 2002). The term complementary and
alternative medicine refers to a set of health care practices that are not part of a
country’s own traditions, or not integrated into its dominant health care system
(WHO, 2002). Hence, a particular practice such as acupuncture might be
referred to as complementary and alternative medicine or treatment in Western
(developed) countries, while it is classified as traditional medicine in China
(WHO, 2002; Hök, 2009). Traditional medicine includes diverse health
practices, approaches, knowledge, and beliefs to treat, diagnose, or prevent
illness (WHO, 2002). Additionally, it can incorporate plant-, animal-, and/or
mineral-based medicines, spiritual therapies, manual techniques, and exercises
applied singularly or in combination to maintain well-being (ibid.).
Complementary and alternative therapies such as Yoga (Kvillemo & Bränström,
2010) and human touch (Loveland Cook et al., 2004) are shown to be effective
and valuable in patients with various forms of cancer, however no research
could be found in relation to HNC. Both therapies integrate awareness of
breathing, improved muscle relaxation, exercise, and social support, and their
documented positive effects on fatigue, sleep, mood, and sense of well-being
(Engebretson & Wardell, 2007; DiStasio, 2008). Since the patients have specific
problems, e.g. living with deformity, perhaps complementary and alternative
medicine could be used as self care to help these patients be capable of daring to
present and touch their deformed face after surgery (Dropkin, 2001). Siegel
(1990) stresses that an individual’s attitude towards self and the power of
positive thinking could be the most important factor in healing a cancer and
promoting health, and this has always been an integral part of Eastern healthcare
culture (Leddy, 2003).
Everyday life with head and neck cancer
It is known that the experience of living with an illness is based on the context
of the individual’s reality, i.e. at home, at work, or in health care, and is related
to subjective discomfort and the practical implications of life (Carnevali &
Reiner, 1990). The personal uneasiness of having HNC often begins with
insidious symptoms that could be similar to experiences from minor ailments,
e.g. blocked nose, sore throat, hoarseness, earache, mouth ulcers, and swollen
lymph glands (Feber, 2000). However the patient’s symptoms progress to
become a struggle of daily problems with breathing, bleeding, nose or mouth
odour, eating, swallowing, fatigue, speaking, and pain in addition to changes in
appearance (Langius et al., 1993, Larsson et al., 2003, Happ et al., 2004,
Ledeboer et al., 2005, Caglar et al., 2008). For example, Larsson et al. (2003)
described patients’ eating and swallowing problems as a very specific contextual
6
phenomenon, and highlighted the need to focus on the patients’ needs on the
whole rather than treating their problems one by one (ibid.). Patients’ nutritional
problems often lead to extreme weight loss (Lees, 1997) in addition to fatigue
(Jereczek-Fossa et al., 2007). Fatigue is a subjective, unpleasant symptom,
especially during and after radiotherapy and can range from tiredness to
exhaustion (ibid.). Together with pain in the shoulder and arm, due to neck
dissection, it interferes with the patient’s ability to perform domestic tasks
(Stuiver et al., 2008). Furthermore, patients’ complex communication problems,
with limited speech or no voice at all, complicates life and their contact with
health professionals (Happ et al., 2004). In addition, patients must often learn to
live with visible disfigurement (Millsopp et al., 2006). Semple et al. (2008)
suggest that patients with disfigurement could be more vulnerable since
appearance affects a person’s identity, self-image, ability to converse, and
success in interpersonal relationships. These physical problems could lead to
psychosocial consequences, e.g. changed mood, social anxiety, and behavioural
avoidance that could minimize patients’ sense of health and well-being in life
(Anderson & Franke, 2002). Living with HNC is challenging because of its
acute and long-term health consequences for those affected, and since health is
such an important resource in everyday life it is important to focus on how
patients can experience better health (World Health Organization (WHO),
1986).
HNC cancer corresponds to the chronic illness definition; an illness that is
prolonged, does not resolve spontaneously, and is rarely cured completely
(National Center for Chronic Disease Prevention and Health Promotion
[NCCDPHP, 2010]). Despite the long-term problems, patients with HNC
seemed to adjust to their new situation; to live with the disease and maintain
their well-being (Bjordal et al., 2001). These thoughts of maintaining well-being
can be understood through the Shifting Perspectives Model of Chronic Illness
(Thorne & Paterson, 1998; Paterson, 2001). This model suggests that people
with chronic illness have elements of both illness and wellness that affect their
life and outlook on living. This determines how people respond to the disease,
themselves, caregivers, and situations, and it represents their beliefs,
perceptions, expectations, attitudes, and experiences of what it means to live
with a chronic illness within a specific context (Paterson, 2003). They either put
the illness itself in the foreground, or they live their life in essence as a well
person. The wellness-in-the-foreground perspective focuses on one’s self as a
person and not as a diseased body. It allows patients to distance themselves from
the disease and to find meaning and hope when focusing on emotional, social,
and spiritual wellness (Paterson, 2001). It permits people to rate their overall
health as good even when their physical function is significantly impaired, and
could provide opportunities for personal growth and change. However, keeping
wellness in the foreground could also prevent individuals from getting the
7
service or attention they need. Consequently, patients are forced to focus on
their limitations and weaknesses to receive this help, and this could threaten
their integrity and sense of self (ibid.). The illness-in-the-foreground perspective
focuses on the sickness, the suffering, and the loss, and patients are absorbed
and overwhelmed by the illness. Health professionals are skilled in helping these
individuals learn about and manage their illness or disability, and emphasise
things that a person cannot do, rather than the possibilities for what they might
do. The model illustrates that the perspective is not static and suggests that
understanding the individual’s perspective at any given time enables health
professionals to provide appropriate care and support for people with either
perspective (Paterson, 2003).
Health
Health is formed, lived, and promoted by people in the settings of their everyday
life; where they learn, work, play, and love (WHO, 1986). The word health has
its roots in the word heal, which originally meant whole (Soanes & Stevenson,
2004), and implies considering a person in his/her entirety as a social being.
Hippocrates (about 400 BC) described health as a condition in which the
functions of the body and soul are in harmony with the outside world. Health is
in a constant state of motion and change. It is valued through each individual’s
personal experience and can be known only through personal description
(Hover-Kramer, 2002). Antonovsky (1996) defines health as a continuum
between the extremes of health and disease, implying that health is present for
the entire lifetime. When individuals move towards the healthier or positive end
of the continuum it is called salutogenic as opposed to pathogenic. This focuses
on patients’ personal strengths and other health resources, i.e. salutogenic
factors, and supposedly contributes directly to health and predicts favourable
health outcomes (Antonovsky, 1996). This perspective of viewing health,
referred to as holistic health, is represented by Nordenfelt (1995, 2007) who
describes health as being related to the extent to which individuals can realise
their vital goals under standard or reasonable circumstances. Furthermore, he
stresses that all individuals have the right to determine and to decide what health
signifies to them specifically, i.e. health relates to the affected and their situation
and goal in life (Nordenfelt, 1995). However, some patients have cognitive
disorders, or no strength, and then next of kin or health professionals need to act
as spokespersons, look after the patient’s needs, and find out what could
improve their health (cf. Naue, 2008). However it is known that patients living
with HNC may experience ill health from the acute and long-term side effects of
tumour growth and treatment, and this could impact on their entire life situation
(Bjordal et al., 2001). But every human being has his/her motives for health and
the experience of health, and this relates to the person’s attentiveness to their
own potential, i.e. their own health resources (cf. Rundqvist, 2004). If the person
8
feels well and can function in his/her social context, then that is their experience
of health and feeling of well-being irrespective of illness or health condition
(Nordenfelt, 1995).
Health promotion
The concept of health promotion is a theoretical concept and has been
interpreted in many ways (cf. Medin & Alexandersson, 2000). It is viewed and
used differently, reflecting different perspectives, traditions, and approaches
towards working with health promotion in practice. Expressions such as
equality, partnership, collaboration, participation, self-determination, mutual
responsibility, and empowerment are used in the Ottawa Charter when
describing health promotion (WHO, 1986). Health promotion is a positive
concept emphasising personal, social, political, and institutional resources, as
well as physical capacities. As such, it is not a responsibility for the health
services alone, since subjective feelings of health and well-being are a necessity
and require participation from the individual self (ibid.).
Leddy (2003) highlight to look at the patients as active individuals with strength
to decide for themselves what they think promotes their health. Rundqvist
(2004) asserts that the human being’s power lies in his/her inner strength, i.e. the
ability to be free to act, which also implies ability to refrain from acting. Some
describe health promotion as being consistent with the disease perspective,
which is based on risk factors that cause disease, i.e. a pathogenic perspective
(cf. Tones & Tilford, 1994). In this context, the patients in focus are recipients
of information and education from health professionals who inform about risk
factors, e.g. smoking that could cause biological changes resulting in disease,
and encourage health activities that could prevent ill-health or promote health.
Though, health promotion in relations to patients with HNC could mean that an
individual’s viewpoint defines what counts as healthful. This is a transformation
from expert-driven care to patient-centred care (Young & Hayes, 2002).
Although this perspective involves education and information, it emanates from
the patient’s own questions and overall life situation (ibid.). For instance, giving
up smoking or alcohol is a reliable way to prevent and lessen the recurrence of
some HNC (Dikshit et al., 2005). Further, smoking and alcohol cessation
involve better physical prerequisites, stronger personal finances, and perhaps
strengthen the patients’ self-esteem. This could promote the patient’s progress in
achieving vital goals; hence entailing health promotion. Yet, giving up these
habits will not directly lead to achieving vital goals in life; nor will it
spontaneously reinforce a patient’s ability to act (cf. Aarstad et al., 2007).
Further, Allison’s (2002) research shows that using (as opposed to abusing)
wine during recovery can lead to better physical and role functioning, less
fatigue, and a decreased sense of illness.
9
It is also known that intake of citrus fruits could be protective and reduce the
risk of developing of a secondary primary tumour in the lung (Dikshit et al.,
2005), but often patients’ anatomical problems make it impossible to eat the
recommended food (Larsson et al., 2003). Pender’s (1996) opinion about health
professionals’ health promotion activities is in line with this thesis; that health
promotion is not restricted to information and education about prevention.
Rather, health promotion aims to, and includes, advocating health wishes and
intensifies patients’ positive potentials for health. Berg et al. (2006) assert that
patients (hospitalised elderly) perceive health as being able to be the person they
were, to do what they want, and feel well and have strength. They view health
promotion as being enabled – through the person they were, through information
and knowledge, and through hope and motivation (ibid.). Hartrick (2002) points
at the significance of relationships in health promoting practice and asserts that
health professionals ought to work in partnership with their patients as relational
beings, i.e. health promotion is a matter of power distribution and joint
responsibility. Furthermore, Richardson (2002) reports that effective
communication, understanding, and insight were experienced as enhancing
health and well-being for patients in HNC care. Wells’ (1998) research reveals
that some patients with HNC have resilience and profound reluctance to ask for
help, despite extensive physical and emotional trauma. Perhaps this is not
necessarily attributable to characteristics of the patient. Research shows health
professionals’ behaviours, e.g. rejection, annoyance, and being stressed could
discourage patients from expressing their needs (cf. Halldórsdóttir & Hamrin,
1997). To experience feelings of a positive human encounter when receiving
care, patients need respect and balance in every care contact with health
professionals (NIPH, 2005). Consequently, perhaps patient-centred care
(Institute of Medicine (IOM), 2000) and accessible information could strengthen
hope and motivation and help these patients build the strength to decide to act
and ask for help if and when they need it.
This corresponds to the Ottawa Charter, which underlines the individual’s own
activities in the health promotion definition – a process of enabling people to
increase control over and to improve their health, i.e. empowerment (WHO,
1986). Empowerment is a multi-dimensional social process. At the core is the
idea that we could accept that power can change and expand and make
empowerment possible (Page & Czuba, 1999). Empowerment is part of health
promotion and as such is said to be essential, implying a mobilisation of
individuals (and groups) by corroboration of their basic life skills and enhancing
their decisions and actions affecting their health (Nutbeam, 1998).
Empowerment is strongly connected to the idea of holistic health (cf. Dossey et
al., 2000), in particular when defined as the ability to act to realise vital goals
10
(Nordenfelt, 1995). Empowerment may also be understood to promote health if
it implies the growing capability of patients to succeed in their self-formulated
goals, with an outcome of better health (cf. Rappaport, 1985).This concept
encompasses the idea that people can form relationships with others, and that the
empowerment process could be similar to a journey that develops as we work
through it (Leddy, 2003). Mok et al. (2004) revealed that empowerment leads to
increased self-determination, self-worth, creation of autonomous decisionmaking, and ultimately a mastery over and acceptance of the illness and the
meaning in everyday life.
Other related concepts
The concept of sense of coherence includes components such as
comprehensibility, manageability, and meaningfulness (Antonovsky, 1987).
Comprehensibility is the extent to which a person perceives the world as being
predictable, ordered, and explicable. Manageability is the extent to which one
believes that he or she has the personal and social resources to handle a demand.
Meaningfulness is the belief that demands are challenges worthy of investment
and commitment (ibid). The stronger the sense of coherence in life, the more
probable the individual will be able to cope effectively with demanding life
situations, which in turn leads to better health (Langius et al., 1992).
Coping is defined as constantly changing cognitive and behavioural efforts (i.e.
coping strategies) to manage specific external and/or internal demands; actions
intended to deal with and overcome difficulties (Lazarus & Folkman, 1984).
Coping strategies are often divided into two categories; problem-focused and
emotion-focused. Problem-focused coping strategies deal with concrete actions;
seeking information, discussing problems, setting goals, or letting someone else
solve the problems. Emotion-focused strategies are used to manage emotional
suffering derived from stress-related situations and may involve the use of, e.g.
crying, worrying, humour, or drugs. Coping could also focus on personality in
the coping process, e.g. the sense of coherence that could lead to successful
management of stressors; self-esteem, self-efficacy, self-determination, and
hardiness (Langius & Lind, 1995; Aarstad et al., 2008).
Self-esteem means confidence in one’s worth or abilities (Soanes & Stevenson,
2004) and is closely related and intertwined with integrity that relates both to
autonomy and a relationship to oneself and to others (ibid.). Self-efficacy is
characterised by the individual’s judgement, e.g. some think that being healthy
is of significance, and the belief in oneself leads to that outcome (Bandura,
1982). Self-determination is enabled through the possibility to participate and
make one’s own decisions, weigh advantages versus disadvantages, negotiate,
and make choices (Thomas & Velthouse, 1990). A greater sense of self11
determination may reinforce greater meaning in life since meaning serves as the
engine of empowerment (ibid.). The concept of hardiness includes the
components of commitment, control, and challenge, and an individual with high
ratings has a resilient personality, which may relate to subjective health
(Kobasa, 1979; Aarstad et al., 2003).
Brülde and Tengland (2003) state that health, health promotion, and quality of
life are complementary and overlapping and refer to subjective evaluation,
which induces both positive and negative dimensions embedded in a cultural,
social, and environmental context. Quality of life is defined as an individual’s
perception of their position in life in the context of the culture and value systems
in which they live and in relation to their goals, expectations, standards, and
concerns (cf. WHO, 2010). Health-related quality of life has been defined as the
effect of individual health on physical, mental, and social functional ability. This
definition includes subjective well-being, satisfaction, and self-worth (Bowling,
1997). Hence, quality of life relates to empowerment since it embraces selfesteem, a positive view of the future, a sense of power, and an actual ability to
affect one’s situation through action both in private life and in society (cf.
Birkhaug et al., 2002).
Rationale of the study
The findings of the studies in this thesis aim to enhance knowledge and increase
our understanding of HNC patients’ experiences of what they felt promoted
health and well-being. The intent is to describe the 35 participants’ experiences
from a health promotion and salutogenic perspective. There is value in focusing
on patients’ personal strengths and other health resources, though possessing a
sense of better health and well-being could be of significance for patients as they
endure their vulnerable situation.
An increasing number of people are contracting HNC and patients face both
acute and long-term chronic complications from the illness and side-effects from
treatment. These factors reflect the illness burden for patients and their next of
kin, and need for continuing and long-lasting access and support from healthcare
and society. These people constitute a vulnerable group since HNC often causes
visible disfigurement combined with speech and eating disorders that could also
lead to psychosocial problems. Such characteristics underline that this fairly
large group in society could be a concern of public health services.
In view of this, it was important to reach a deeper understanding of how patients
could find a balance between ability, demands, and actions for realising their
vital goals, under realistic conditions, during this long-term illness. This goes far
beyond a superficial knowledge of the situation – it means trying to understand
12
and enter into the affected individual’s experiences and sphere of thinking,
trying to gain insight and share feelings of another individual and understand the
meaning that he or she attaches to a phenomenon.
Aims
This thesis aims to reach a deeper understanding of living with head and neck
cancer and to identify the experiences that patients felt promoted their health and
well-being.
Specific aims:
• to describe cancer patients’ experience of nurse behaviour in terms of
critical incidents after nurses had given them health promoting care (paper
I).
• to describe the characteristics of health promoting contacts with health
professionals as encountered by individuals with head and neck cancer
(paper II).
• to shed light on health promotion from the perspective of individuals
living with head and neck cancer (paper III).
• to illuminate what it means to live with head and neck cancer (paper IV).
Methods
Design
A qualitative research design was chosen since this type of design generates an
awareness of human experiences, as expressed by the individuals themselves in
their natural context (Lincoln & Guba, 1985). The design is flexible, and the
researcher is the tool for data collection and analysis while engaging in ongoing
reflection and decision-making throughout the studies’ progression (Polit &
Beck, 2008). Consequently, this can lead to further research based on realities
and viewpoints that were not known or understood at the outset of the research
(Lincoln & Guba, 1985). The studies in this thesis employ different qualitative
methods. The first study was conducted in Denmark, Finland, Island, Norway
and Sweden, with one individual from each of the four participating Nordic
countries and 17 from Sweden (paper I). Since costs, logistics, and time would
have been prohibitive in conducting a qualitative follow-up study in five
countries, the remaining studies (papers II, III, IV) focused on the Swedish
13
HNC care context. Also, it was not my intention to conduct comparative
research between the countries. Table 2 presents an overview of the four papers.
Table 2 Overview of papers I to IV
Paper
I
Participants (n= 35)
male/female and
countries
n=21 (13 men and 8
women)
n=17 from Sweden
and one from each of
the four participating
Nordic countries
II and n=8 (4 men and 4
women)
III
Sweden
IV
n= 6 (4 men and 2
women)
Sweden
Method of data
collection
Method of data
analysis
Audio taped semiCritical incident
structured qualitative technique
interviews
Audio taped semiQualitative content
structured qualitative analysis (thematic in II
interviews
and latent in III)
Audio taped semiInterpretative
structured qualitative descriptive analysis
interviews
Study context
The first study was conducted from 1997 through 1998 in the Nordic countries
(paper I), the second study during 2005 in Sweden (papers II, III), and the last
study was conducted from 2005 through 2007 in Sweden (paper IV). All
participants had received or were receiving treatment for HNC, i.e. surgery,
radiotherapy, or chemotherapy at their regional oncology centre or local ear,
nose, and throat clinic. During these treatment periods the patients had contact
with numerous health professionals, i.e. different surgical, radiation, and
medical oncology experts, dentists, pathologists, physiotherapists, speech
therapists, social workers, dental hygienists, dieticians, and nurses. Healthcare
policies concerning the treatment of HNC in the Nordic countries have changed
during the past decade, from inpatient care in general to short hospital visits and
outpatient care. In addition, policymakers have stipulated sharper guiding
principles towards more health promoting care (NPH, 2009).
14
Participants
All patients (n= 35) interviewed for this thesis were purposively selected in
consultation with medical and nursing staff involved in their care.
The selection criteria were:
• Men and women above 18 years of age
• Willingness and interest to verbalise and communicate their own
experiences
• Diagnosed and treated for different forms and stages of HNC
• Curative or palliative treatment of HNC
Nine of the patients (6 men and 3 women) originated from seven countries
outside of Sweden (Southern Europe, Middle East, and other Nordic countries).
Of the 21men (aged 38-83 years; median 62.6 years) 15 were married or
cohabited, two lived apart, and the rest were divorced, widowed, or single. Of
the 14 women (aged 59-81 years; median 65.4 years) nine were married or
cohabited, one lived apart, and the rest were divorced, widowed, or single. All
but two men and two women had children, and several had grandchildren. One
participant was unemployed, and 14 were employed, one was a student, five had
disability pension, three had early retirement pension, and eleven were retired.
Of the patients who chose not to participate 12 were men (aged 35-65 years;
median 48.6 years) and seven were women (aged 32-80 years; median 55.7
years). Six men and four women of those initially asked chose not to participate
in the first study (paper I), and six men and three women chose not to participate
in the second study (papers II, III). All agreed to participate in the last study
(paper IV).
Table 3 presents an overview of the diagnoses of patients that participated in
studies conducted for this thesis. The table was designed to include the specific
diagnoses while ensuring the confidentiality and integrity of all participants
when grouped together.
The most common diagnoses were tonsil cancer (6 men, 1 woman) and larynx
cancer (4 men, 2 women). The most frequent accompanying diagnosis was
cancer in the floor of the mouth (2 men, 2 women). Five participants had
additional forms of solitary cancer in other parts of the body.
15
Table 3 Overview of the 35 participants´ diagnosis
Diagnosis
No. of
Male/female
participants
Cheek cancer
Epipharynx cancer
Gingival cancer
Laryngeal cancer
Lip cancer
Mandible cancer
Maxilla cancer
Mouth bottom cancer
Nasal cancer
Oropharyngeal cancer
Unspecified head and neck cancer
Oesophagus cancer
Salivary gland cancer
Tongue cancer
Tonsil cancer
Thyroidal cancer
3
1
2
6
1
1
2
2
1
1
2
0
1
4
7
1
3/0
0/1
0/2
4/2
1/0
1/0
1/1
1/1
1/0
0/1
1/1
0/0
0/1
2/2
6/1
0/1
Other solitary cancer in the body
5
2/3 2)
1)
2)
(2/2) 1)
(0/1) 1)
The participants’ side diagnoses are indicated in brackets
Prostate, stomach, breast, lymphoma, melanoma, cancer
In nearly half of the participants ([n= 15] 7 men and 8 women) the cancer had
not spread, but nearly all patients had large tumours. Eighteen participants had
lymphatic gland metastases and eleven had recurrence near the first tumour.
Seven had both metastases and recurrence. This displayed the severity of the
HNC sickness and could have impacted on both the unique patient’s everyday
life and on the next of kin who shared his/her experiences. Some of the patients’
problems, symptoms, and changes could be particularly unpleasant, for instance:
• 33 participants experienced eating and swallowing difficulties
• 31 participants had visible tumours or skin defects in the face or neck
after surgery or radiation
• 20 participants had hoarseness
• 18 participants had increased phlegm with coughing or spitting, or no
saliva and dry mouth
• 16 participants had articulation problems
• 5 participants who had undergone laryngectomy had pseudo voice
• 4 participants had nasal voice
16
Interviews
All studies were based on individual, open-ended, semi-structured, qualitative
interviews (Kvale, 1996). A semi-structured guide with written topics for all
studies was developed in advance, reflecting the author’s interest in everyday
life, especially in what promotes better health and well-being for patients with
HNC. In the first study, a semi-structured interview guide was constructed by
following Flanagan’s (1954) advice, i.e. questions were derived from the aim of
the study (paper I). After one test interview, both the technique and the
questions proved to be satisfactory and were included in the study. In the second
study, a semi-structured interview guide was constructed and used, and three test
interviews were conducted. Since these were unsatisfactory, the guide was
divided into two areas, one to cover the topic for paper II and one for paper III.
After the revisions, all participants were re-interviewed using the two-part guide.
The first three test interviews were included in the respective participant’s
interview. A semi-structured guide was constructed for the last study. One test
interview was conducted and showed the guide to be useful. Hence, the
interview was included in the study (paper IV). In this last study, the interviews
were repeated and extended over 1-year illness experiences, dissimilar in points
in time for each participant. Table 4 present an overview of the fifty-three
interviews that were conducted in total.
Table 4 Overview of the interviews (n=53)
Paper Interviews Year of the
interviews and
length of the
collection period
n=21
1997-1998
I
18 months
II and n=8 +3 1)
III
IV
n=21
Time after initial Length of
diagnosis or
interviews
recurrence
(minutes)
120 days -14
years
30-90
2005
7 months
45-270 days
60-120
2005-2007
19 months
7-30 days 2)
50-75
1)
Three test interviews were performed and included. 2) Interviews with the two
participants that had recurrence were performed 5 and 9 months after the initial
diagnosis.
17
Interview process
All patients (n=35) gave their written consent before the interviews and chose
the time and place for their interview. Some patients were interviewed once
(papers I, II, III), while others were interviewed up to four times (paper IV).
The patients were interviewed at their homes (n=30), at hospitals (n= 21), or at
their place of work (n=2). Since it could be problematic to interview patients
with impaired speech, sufficient time was allowed to reach an understanding.
The interviewer focused on topics, however the participants were allowed to talk
freely about topics and narrate in their own words. Problems could arise because
Swedish was not every patient’s native language. Hence, parts of some
interviews were conducted in English. Neither the participants nor the
interviewer (the author of this thesis) had English as their native language, but
all were familiar with the language. Body language was also used frequently,
e.g. facial expressions, lip movement, or pointing to the body to describe
surgery, pain, disgust, or cheerfulness. Some participants had next of kin nearby
during the interview, but comments from next of kin were included only if the
participant asked them to fill in words and gave a nod of approval. Several of the
participants glanced through private diaries or at photographs or brochures
during the interviews to trigger memories of their illness experiences.
Additionally, some participants clarified their answers in writing. All
discussions during the interviews were tape recorded. Nevertheless, most
participants spoke freely with the tape recorder present and seemed to disregard
it after a short period. The interviews lasted 30 to 120 minutes, but contact time
with the patients was substantially longer. The author of this thesis transcribed
the tapes verbatim in the days following the recorded interviews. At that time
she could recall her experiences of the interview situation and if necessary add
small notes to the transcripts of what happened, e.g. when participants
experienced episodes of coughing or crying. This helped capture the illness
impact on the participant’s entire body. The transcriptions yielded 1083 pages
(1.5 spacing).
Text analyses
Owing to the richness of the text and the ability to interpret the data on different
levels, different qualitative analyses were used to interpret the collected
information. Qualitative content analysis is an interpretation process that focuses
on similarities in and differences between different parts of text that lead into
categories and/or themes (cf. Graneheim & Lundman, 2004). A category
contains several codes with similar content that answers the what question and
relates to the content on a descriptive level. A theme answers the how question,
i.e. the ‘red thread’ throughout the condensed meaning units, codes, or subcategories (Polit & Beck, 2008 p. 517). A meaning unit is a constellation of
18
words or statements that relate to the same meaning, and codes are a process of
identifying recurring words, themes, or concepts within these meaning units.
Burnard (1995) claims that there are different levels or dimensions of
interpretations ranging from the concrete surface level of words used down to
the deeper level of meaning. The researcher’s pre-understanding was treated as a
part of the interpretation process as well as a tool to guide it. Consequently, the
text analysis was open to several possible interpretations. The first study was
analysed with the critical incident technique (Flanagan, 1954) (paper I), the
second study with a qualitative content analysis, i.e. the thematic in paper II
(Baxter, 1991) and the latent in paper III (Berg, 2004). The last study was
analysed with an interpretative descriptive analysis (Thorne et al., 1997; Thorne
et al., 2004) (paper IV).
Critical incident technique
In 1954, Flanagan described the critical incident technique that has been used in
healthcare research, e.g. by Benner (1984), Rooke (1990), and Svensson and
Fridlund (2008). This method obtains data from participants by in-depth
exploration of critical incidents and human behaviours related to the topic under
study (Flanagan, 1954). The technique differs from other self-reported
approaches as it focused on something specific that the participants can likely
give evidence on as an expert (Polit & Beck, 2008). It includes a detailed
description of the situation that led to the incident, action, or behaviour, and the
result. This study aimed to describe cancer patients’ experiences of nurses’
behaviour in terms of critical incidents after nurses had given them healthpromoting care. A critical incident was defined as an event of great importance
to the patient, which had either a positive or negative impact on the patients’
experience of feeling better health and well-being. All incidents were classified
into groups and reformulated into different types of actions, i.e. sub-categories.
These sub-categories were allocated into the nurses’ behaviour, i.e. categories.
The categories were then placed into one of the main areas (paper I).
Qualitative content analysis
The following content analysis of narrative data aims to identify prominent
themes and patterns among the themes (Polit & Beck, 2008). It involves
breaking down text into smaller units, and coding and naming these units
according to the content they represent. Thereafter, the coded material is
grouped by focusing on similarities and differences. The thematic and latent
qualitative content offers alternatives for analysis, and Sandelowski (2000)
asserts that researchers can use wording to develop qualitative descriptions when
analysing the different qualitative content of text. In the second study, the
transcribed text was analysed using both thematic (Baxter, 1991) and latent
19
qualitative content analysis (Berg, 2004). Since the aim was to describe patients’
experiences of those features of a contact with health professionals that could
increase their feelings of better health and well-being, the researcher needs to
reflect on the context (paper II). Hence, it seemed appropriate to use thematic
content analysis since Baxter (1991) claimed that this analysis always includes a
total picture of the circumstances under analysis. The questions to patients were
asked in positive sentences, but throughout the process of identifying meaning
units the analysis revealed both positive and negative experiences and even the
desire for health promoting contacts. For that reason the text was divided into
two parts and named health promoting contacts and not health promoting
contacts. The latter includes participants’ wishes for health promoting contacts,
since these were not experienced contacts, but they might broaden the findings
on the meaning of the concept. Also, as a basis to provide opportunities for
amplifying knowledge about health promoting contacts, it seemed important to
know what the participants thought promoted health and well-being. Then the
meaning units were grouped according to which period in the participants’
illness trajectory they belonged, and were then condensed and labelled with a
code. All coded data were grouped together based on their similarities and
differences, and ultimately three themes were named (paper II).
Latent qualitative content analysis was used since the aim was to shed light on
health promotion from the perspective of individuals living with HNC, i.e. the
experiences of what the patients’ felt promoted their health and well-being
(paper III). This seemed to be appropriate since according to Berg (2004) it
involves interpretative reading of the representation of what is essential in the
text to reveal the deep structural meaning conveyed by the message. The first
reading revealed that health could be promoted in three ways; by means of
oneself, by family and others, and by various activities. The meaning units were
marked, condensed, and labelled with a code, and the codes were sorted into
sub-themes. A search was conducted for a pattern in the sub-themes, and the
themes were named. Every theme was further analysed, and one main theme
could be formulated (paper III).
Interpretative descriptive analysis
Before the final study began (paper IV), the findings and methods used in the
other studies were discussed in attempting to form a critical review and basis for
a preliminary analytic framework (Thorne et al., 2004). The pre-analytic
understanding was that the findings had in some way captured the experiences
of 35 HNC patients as regards contact and care involving health professionals,
and the patients had reported when these contacts had promoted health and wellbeing. Some patients, however, reported negative experiences, e.g. being
20
exposed and vulnerable in contacts with health professionals. The findings also
mirrored the patients’ process of empowerment by being enabled to act and take
control over everyday life with help from internal and external resources (papers
I, II, IV).
Although patients were obviously troubled by tumour location and the side
effects of treatment, which placed a heavy burden on everyday life, none of the
studies revealed this profoundly. This pre-analytic understanding revealed a
need for deeper understanding of what it meant to live with HNC. It was decided
to repeat the interviews with a small sample of patients and follow, for one year,
the unique experiences of individuals living with the illness.
Already during the interviews the narrated stories revealed the individuality of
what it meant to live with HNC, and therefore each patient’s text was analysed
and coded separately. Likewise, Thorne et al. (2004) conveyed the importance
of respecting the contextual nature of the text and focusing on the intellectual
processes that are cornerstones in qualitative data analysis. The interview text
was rich and deep in structure, and the author moved in and out of the text,
critically examining the initial codes by asking questions such as: What was said
here? What, where and when did it happen? What does/ could it mean for this
person? By changing between the codes and the exclusive patient’s complete
text, the progression of understanding evolved from the surface to a deeper level
of interpretation. From this investigation to uncover patterns in the text grew an
interpretation of sub-themes from each interview, and these were further
analysed when looking for changes over time. After that, one theme was
interpreted for the complete transcript of each unique patient. In the final stage,
a main theme was interpreted, i.e. an association that could mirror living with
HNC for all the patients (paper IV).
The author’s pre-understanding
I am a registered nurse with over 25 years of experience in working in an ear,
nose, and throat clinic that treats patients in different stages of HNC.
Additionally, for the past decade I have been a lecturer, teaching e.g. health
science, nursing and oncology proficiency. My pre-understanding was a
requirement for performing the interview studies, given my practical knowledge
of the care context and the communication problems that these patients can
encounter. I was also aware that individuals in this group of patients are
vulnerable when meeting strangers, due to their changed appearance or other
issues, e.g. coughing and spitting necessitated by increased phlegm. I have
grown proficient in shaping a dialogue and participating in and providing
equality in the interview situation. Also, I dare to bring up and discuss how
21
patients could feel when being placed in a dependent care situation. I know the
importance of being an attentive listener, respecting the patients’ life situation,
and paying attention to their will to communicate. I recognise the need to probe
and to prolong the waiting time for answers, not necessarily verbal but also
responses expressed in body language or in writing.
My pre-understanding about living with HNC and my concept of health
promotion has changed during the work on this thesis. As a consequence, the
concept of health promotion is not equivalent in my studies. I realise that as a
health professional you can perceive, but not experience, the inner feelings and
needs associated with having an illness. This awareness can grow and be used as
part of caring or the interpretative research process. Since my pre-understanding
could interfere with the findings, this should be taken into consideration
especially regarding the concept of health promotion.
Ethical considerations
The Lund University Ethics Committee (LU, 348/1997, LU 772/2004) approved
the studies in Sweden. In the other Nordic countries, chief physicians at the
regional ear, nose, and throat hospitals where the patients had been treated were
informed about the studies and agreed to its implementation. All studies
complied with ethical principles, i.e. the principles of respect for autonomy,
non-maleficence, and beneficence (Beauchamp & Childress, 2001, Northern
Nurses Federation [NNF], 2003, World Medical Association [WMA], 2004).
The data collected were coded and kept in strictest confidence, and the
participants were guaranteed confidentiality in the presentation of study
findings. The first study revealed no unique details, e.g. diagnosis together with
country, age, and gender (paper I). Participants in the next two studies were
treated in a specific area of southern Sweden, and it was important to act with
strict confidentiality (papers II, III, IV). The author was careful not to reveal the
specific diagnosis, age, gender, the exact day when the interviews were
performed, or other such details. Participants who originated from other
countries, but were living in Sweden, were not referenced in terms of mother
country or language. Confidentiality was also explained to next of kin if they
were present during the interviews.
Principle of respect for autonomy
In all the studies, patients were presented with a written form asking if they
would be willing to participate and be interviewed. In the first study, the form
22
was written in their native language, but the open interview questions were
posed in Swedish, English, and occasionally in the participants’ native Nordic
language (paper I). The author of this thesis provided verbal information about
the study and obtained the patients’ written, informed consent before they
enrolled. The participants also gave oral informed consent before the repeat
interviews in the final longitudinal study (paper IV).
All patients were informed that their participation was voluntary, and that they
could withdraw at any time during the research process without explaining the
reason, and with no consequences to usual care. The patients’ physical and
psychological conditions received special attention, and added value was shown
to severely ill individuals. Since many of the participants had difficulty
speaking, an attachment to the written form encouraged them to use the
interviewer’s telephone number, address, or e-mail if they wanted to raise
questions or leave the study, but no participant made such a request. On
occasion participants asked to postpone the interview, and death precluded some
interviews (paper IV).
Principles of beneficence and non-maleficence
When conducting qualitative research with patients who are in vulnerable life
situations the principles to do no harm and to do good are highly important and
were applied in this research, e.g. when taking the individual’s very specific
speech impairment into consideration (cf. Philpin et al., 2005). Hence, the same
interviewer with extensive working experience as a nurse in this care context
conducted all the interviews. Potentially, problems concerning physical ability,
language, or culture could have arisen, but none did. The interviewer made a
concerted effort to respect and intuitively perceive the needs of the individual
participants. The interviewer waited for responses and encouraged the
participant to talk during the interviews, showing flexibility when participants
felt tired or found it necessary to use body language or mime words. These
factors could have contributed towards the successful execution of the
interviews.
23
Findings
The deep understanding of living with head and neck cancer (HNC), and the
experiences of what the patients felt promoted health and well-being, was
interpreted as having strong beliefs in a future in face of living on a
rollercoaster. This interpretation was built on the patients’ experiences of the
unique impact of HNC, its threat against their identity, and an existence with
swiftly changeable feelings oscillating between hopelessness and hopefulness
(paper I, II, IV). Inherent in these feelings were the patients’ struggle and
orientation towards the health, power, and control that offered them belief in the
future (papers III, IV). Yet the findings also revealed the opposite – that some
patients showed less energy and a sense of facing insurmountable barriers
against achieving feelings of health. Hence, they felt less command over life and
less belief in the future (papers III, IV).
All participants’ experiences were of course based on their specific everyday
situations. Hence, their capacities, difficulties, needs, and access to support
differed substantially. Many of the participants felt vulnerable, exposed, and
even disempowered in their contacts with health professionals. Especially before
and after treatment they experienced feelings of being alone, abandoned, and
insecure.
Nevertheless, inherent in the interpretation was their search for ways to promote
health and well-being, although they experienced this as a means to find ways of
thinking about a future life. The success of this work was interpreted as depend
on their connection with enabling, which could involve internal motivation to
act i.e. internal strength, and external resources, i.e. when others stimulate
him/her to engage in processes to look forward (papers I, II, III, IV).
Table 5 summarises the findings. As is apparent, the author’s pre-understanding
of the health promotion concept is not equivalent in the studies. The first study
revealed her traditional biomedical and pathogenic standpoint; dependent, of
course, on the aim of the study. The nurses engage in monitoring, caring,
inspecting, observing, informing, and educating patients about risk factors in the
context of health promotion activities, helping patients cope with the
environment to reach well-being. In the subsequent studies, the affected
individuals’ perspectives on living every day with HNC dominated. These
findings are rooted in the affected individuals’ activities and experiences of what
they thought promoted their own health and well-being.
24
Table 5 Summary of findings
Paper Aim
I
Main areas/ Categories/themes Sub-categories/sub-themes
main
themes
The nurse checked up on the
To
Cognisance The nurse
patients’ nutritional status,
supervised
describe
cared for the patients’
cancer
personal hygiene, observed,
patients’
inspected the patient
experien
ces of
The nurse cared about
The nurse
nurses’
nursing, technical, and
demonstrated
behavio
knowledge of her medical issues, and knew her
ur in
own limitations
profession
terms of
critical
The nurse brought The nurse informed about
incident
social issues, nutrition,
enlightenment
s after
smoking, treatment, and side
nurses
effects, and instructed about
had
medical issues
given
them
The nurse made The nurse allowed the patient
health
to co-operate; take
participation
promoti
responsibility for health,
possible
ng care
and make their own decisions
Solicitude
The nurse showed The nurse was obliging;
encouraging, respectful, gave
personal
physical assistance, and
consideration
showed empathy
The nurse was
supportive
II
To
describe
the
characte
ristics of
health
promoti
ng
The nurse was thoughtful,
consoled, and answered the
call-bell
Being believed in
one’s illness story
Having a working
relationship with
health
professionals
25
III
IV
contacts
with
health
professi
onals as
encount
ered by
individu
als with
head
and
neck
cancer
To shed
light on
health
promoti
on from
the
perspect
ive of
individu
als
living
with
head
and
neck
cancer
To
illumina
te what
it means
to live
with
head
and
neck
cancer
Receiving
individualised,
tailored care
The ability Being enabled by
to regain
dialogue with
control and one’s inner self
empower
oneself
Being enabled by
means of contact
with a social
network
Transformed and improved
self-esteem, recognising and
embracing existentiality,
increased self-determination
Emotional support, practical
support
Being enabled by Nature, hobbies, and
means of contact activities
with, and a
passion for, the
environment
Living in
captivity
Altered sense of
affiliation
Trapped in an alien body,
taking actions to explore new
life conditions, isolation and
changed relationship,
spiritual confidence and faith
Hostage of health Feelings of being disregarded
in treatment decisions and
care
being a guinea pig
Existential disequilibrium,
Locked up in a
broken body, but perceived rejection by next
with a free spirit of kin, self-induced isolation,
death as transition
26
Confined in a
rogue body
Being afraid of choking
during sleep, necessity of
restrictive living, preparing
for own death and next of
kin’s security
Forced to depend Living on a rollercoaster, left
on others
at the mercy of healthcare
professionals, living in a
compromised state,
reconciliation with the illness
Caught up in a
Confidence in health care,
permanent illness threatened by legal
trajectory
proceedings, lack of
accessibility and continuity
in health care, financial
problems and cancer are
a family affair
The most important findings will be presented under the following headings:
living with head and neck cancer; experiences of what promotes health and
feelings of well-being; and experiences of what hinders health and feelings
of well-being.
Living with head and neck cancer
The findings showed that for many of the patients’ (n=35) experiences of living
with HNC meant an existential loneliness, and was interpreted as a unique and
complex feeling, not unlike that of living in captivity (paper IV). This
imprisonment was a result of the participants’ illness-related experiences of
living alone in existential insecurity and encapsulation, reliant day and night on
how the illness impacted their vital needs for survival, e.g. physical attributes
making it difficult to breathe, eat, and swallow. Although the physical impact
could reveal similarities, it always involved unique experiences that were (1)
physically, (2) emotionally, (3) socially, and (4) existentially confining for the
patient (paper IV).
27
(1) Patients experienced physical confinement when choking sensations and
extreme swelling in the throat forced them to exhibit ungraceful behaviour, e.g.
massive phlegm stagnation resulted in constant hawking, clearing of throat, and
spitting, and they felt trapped in an alien body (papers I, IV). These feelings
were intensified and interwoven with their changed appearance and dependence
on technical and medical devices, e.g. feeding tube and/or tracheal tube (papers
I, II, III, IV). Further, it was understood that feeling breathless made patients
extremely anxious, and they were afraid of choking during sleep. This
discomfort mirrors confinement in a rouge body (paper IV).
(2) Experiences of emotional confinement were revealed when hovering between
despair and hope, where patients first had a sense of uncertainty, anxiety, and
depression, and then experienced a swing in the opposite direction. It was as if
they were living on a virtual rollercoaster. Their feelings of despair intensified
when needing an alter ego to deal with the complexities of speaking, and the
findings revealed living in a compromised state (paper IV). The experiences of
hope were most noticeable in comforting meetings with next of kin, good
friends paper III), and sometimes with health professionals that gave them
emotional support (papers I, III).
(3) Experiences of social confinement were revealed when eating difficulties and
disfigurement altered the patients’ interactions and encounters with others. In
social encounters it was understood that the patients were met by stares or
avoidance in addition to changed attitudes and reactions, even from their circle
of acquaintances, and they felt an altered sense of affiliation (paper IV). It was
not uncommon that they preferred to be alone and limited their social life to
conserve energy (paper III), and the findings revealed this self-induced isolation
(paper IV). Some patients felt that the social circumstances that forced them into
dependency on others also made them vulnerable, and they felt as if they were
trapped in a social net. The distribution of domestic work changed, affecting
everyday life for both the patients and their next of kin (papers III, IV).
Furthermore, their life could be affected by financial problems because both the
patients and their next of kin experienced increases in the cost of living, e.g.
medicine, treatment, special diet, travel expenses, or inability to work (paper
IV). The patients often shouldered the responsibility for protecting their total
family’s economic situation and the findings revealed that they looked ahead to
prepare for their own departure and their next of kin’s future economic security
(paper IV). The findings showed that the patients’ working life changed (paper
I). Further, feelings of harassment from employers when being on sick-leave, no
consideration given to their new life situation, and feeling threatened by legal
proceedings (paper IV).
28
(4) Experiences of existential confinement were revealed when unemployment
seemed to affect the patients with feelings of existential disequilibrium, and they
presented spiritual beliefs that their total life situation had brought forth the
latent cancer in their body (paper IV). Patients developed an existential
loneliness and feelings of living in the land of the sick (paper IV); an experience
amplified by the patients’ perceived rejection by next of kin and changed sexual
relationship (paper IV).
Experiences of what promotes health and feelings of wellbeing
The findings revealed the patients’ unique willpower to fight for something that
could enhance their feelings of better health (paper III). The patients’ focus
could be understood as an endeavour to improve health and to find hope, i.e. to
achieve the best possible well-being to fulfil new life goals of health (papers I,
II, II, IV). The ability to reach goals for better health was connected to factors
such as the patients’ (1) internal and (2) external enabling to regain control and
empower oneself (paper III).
(1) Ability to reach internal enabling
Factors that impacted on the patients’ internal or intra-personal ability to enable
and use inner strength could be observed in the dialogue with the inner self
when the patient practised mental training and praying. They learned to use their
inner potential and adeptness to discover and take charge of solving their own
problems by their transformed and improved self-esteem (paper III). Internal
enabling was connected to thoughts and persona of how they looked at their
existence and self, i.e. their self-confidence and self-image, and this seemed to
impact on their ability of self-determination (paper III). As a result, the findings
revealed an intention not to act as a victim of circumstance, but to somehow
reconcile with the illness. They actively took action to explore new life
conditions and felt a need, and were relieved, to meet soul mates having similar
experiences (papers III, IV). The patients seemed to recognise and embrace
existentiality and to be totally focused on being present in the here and now as a
grateful survivor (paper III). Further, the findings revealed patients’ free spirit
and spiritual confidence and faith with no fear of dying and the conviction of reincarnation and death as a transition (paper IV).
(2) Ability to reach external enabling
29
Factors that impacted on the patients’ external or inter-personnel enabling of
ability were revealed in support from (a) social networks (b) contact with
environment, (c) and health care. Helped by these external enablers, the patients
could reach their own strength and form and enhance their health.
(a) Being enabled by means of contact with a social network was revealed as
emotional and practical support from the patients’ next of kin and close friends
(paper III). Emotional support 24 hours a day was particularly precious – to
have one important person to talk to, someone who dared to listen and contained
their fears when the patients’ thoughts were in turmoil from their sickness and
existence (papers III, IV). The patients revealed cheerful, humorous, and
amusing interactions that gave them strength and motivation to live, and they
revealed that having HNC was a family affair (papers III, IV). They also
revealed the practical support they received, e.g. assistance with household
work, personal hygiene, and phone calls.
(b) The patients’ external enabling of ability was revealed by means of contact
with and appreciation for the environment, categorised as nature, hobbies, and
activities. Nature was understood to have a healing power, and when being
outdoors in any weather conditions the patients enjoyed nature’s colour and
peacefulness. Outdoor activities seemed to increase the patients’ physical
strength and reduce their psychological stress (papers III, IV). Although
appreciation for the environment offered external enabling of ability, the
findings also revealed that nature helped them acknowledge their own existence,
and they found it easier to connect with and find transpersonal relatedness to a
supernatural power (papers III, IV). The findings revealed that if patients
experienced something that suited their capability, something they found
pleasurable and motivating, this hobby and activity created positive feelings and
joy, and they practiced it over and over again.
(c) Other factors that impacted on the patients’ external enabling of ability were
revealed in their contact with health care, categorised into health care
organisation, health professionals’ knowledge and experiences, and health
professionals’ attitudes. The findings revealed that patients had a better feeling
of health when the health care organisation successfully provided long-term,
continuing access with individualised, tailored care from, e.g. physicians,
dieticians, dentists, dental hygienists, and nurses (papers I, II). This
corresponded to the findings revealed when patients experienced confidence in
health care and turned over the medically responsibility to health professionals
because of their own lack of medical knowledge (paper IV). Health
professionals’ knowledge and experience was an expectation, and the patients
always assumed that health professionals were skilled, knowledgeable, effective,
and updated on medical and technical issues (papers I, II, IV). It was understood
30
that the patient needed to be respected as a unique person and needed to be
believed when telling their illness story. Contacts with health professionals
could then facilitate improved health (papers I, II, IV). These contacts were
named health promoting contacts and were mainly experienced during the
treatment phase when patients had daily contact with specific, qualified health
professionals (paper II). It was understood that kind and considerate treatment
was invaluable in contacts with health professionals and enhanced a patient’s
sense of autonomy (papers I, II). It was obvious that patients wanted to remain
as independent as possible. However, during acute life-threatening situations
they had a sense of well-being despite their dependence, i.e. when health
professionals cared for, checked, examined, and observed them (papers I, II).
The findings revealed that health professionals’ attitudes or behaviours, e.g.
silent body language or outspoken views on mankind, were especially important
for the patients’ learning and confidence in performing self-care (paper III). In
dealing with the patients’ speech impairments it was important for health
professionals to be attentive and have a humble attitude. Then, patients felt that
co-operation and a practical working relationship were achievable (papers I, II).
The patients wanted to be seen and respected as active persons. They wanted to
meet health professionals that supported their health objectives and positive
potential for health rather than focusing on the disease and related problems
(paper III). The findings revealed that the patients’ strengths, competencies, and
health resources grew in the course of participating and co-operating with health
professionals through mutual or individual initiatives (paper I). Also, the
patients revealed that they were surprised to meet health professionals that
showed solicitude and were available, engaged, respectful, confirming, and did
more than expected (papers I, II).
Experiences of hindrances to health and feelings of wellbeing
In the face of the patients’ vulnerability and new life circumstances,
accompanied by distressing illness experiences, the findings revealed how
complicated it could be to set and attain goals for better health. In addition, it
was understood that in human encounters, and especially in the dependant
position of being a patient and seeking health care, people could feel that they
had lost their power and self-control (papers I, IV). Consequently, the patients’
could experience hindrances to health as a lack of ability to connect to his/her
(1) internal and (2) external enabling.
(1) Lack of ability to reach internal enabling
31
Some patients revealed a lack of ability to reach goals for health, due to their
inability to connect to inner strength, and the findings revealed feelings of
diminished strength of mind (papers III, IV). The findings also revealed a
changed self-image that seemed to burden the patients with feelings of low selfesteem and decreased self-confidence. These shortcomings in self-directed
support could also result in a self-depreciated sense of how other people viewed
them, and they felt as if they were living in a compromised state (paper IV). The
feeling of self-imposed incarceration was obstructed, giving rise to feelings of
being taken hostage by health care. The findings also revealed that the patients’
weakened self-worth interfered with their autonomy and performance, and they
felt left out of treatment decisions, like a guinea pig (paper IV).
(2) Lack of ability to reach external enabling
Hindrances in reaching external enabling were connected to the same factors
and revealed a lack of support from (a) social networks, (b) contact with
environment, (c) and health care.
a) Patients’ diminished inner feeling of self could influence their social contacts
and change their relationship to next of kin, thereby increasing isolation. In
addition to the adverse physical and communicative impact of their illness,
patients felt discomfort from being in situation that forced them to depend on
others day and night (paper IV).
b) However, the findings also revealed feelings of insecurity caused by the
gravity of illness that forced the patients to stay home alone, having little contact
with nature. Patients revealed that they felt a necessity for restrictive living.
Hence, in addition to the fatigue that diminished or stopped their involvement in
hobbies and other activities, this created feelings of ill-health and powerlessness
(paper IV).
(c) The same external factors could also be experienced as hindrances in
enabling patients’ contact with health care, and could also be categorised into
health care organisation, health professionals’ knowledge and experiences, and
health professionals’ attitudes. The findings revealed that health care
organisation could be experienced as a barrier to patients’ feelings of wellbeing, and the patients frequently revealed feelings of abandonment and lack of
confidence in health care. When problems arose, the patients were often
uncertain who to contact amongst the numerous health professionals (papers I,
II). They felt lost and, due to their vulnerability, dared not ask questions.
Moreover, they felt exhausted by the massive, impersonal, one-way information
and other shortcomings in human encounters (papers I, II, III, IV). It was
32
understood that at times health professionals did not comprehend patients’
feelings of vulnerability resulting from dependency on health care, and this
insensitivity increased the patients’ suffering and contradicted their feelings of
health (papers I, II, III, IV). The findings revealed deficiencies in accessibility
and continuity of health care. This, added to a sense of being caught in a
permanent illness trajectory, compounded the patients’ vulnerability and stress
in life (paper IV). Contacts with health professionals that revealed hindrances
against improving health were named not health promoting contacts, and were
experienced predominantly before and after treatment (paper II). Still it was
understood that the most important factor to patients was to be believed when
expressing their illness story (paper II). If the patients were met by attitudes
from health professionals of not being respected, or even listen to, it led them to
search for attentive health professionals. Patients revealed being put off balance,
i.e. less capacity to grasp health goals, when encountering unengaged or
incompetent health professionals with paternalistic or superficial attitudes who
seemed to lack respect for the individual behind the patient role. When patients
worried about the imperfections in their body such encounters were often
accompanied by feelings of not having their opinions valued (papers II, IV).
Discussion
This thesis aimed to reach a deeper understanding of living with head and neck
cancer (HNC) and to identify the experiences that patients felt promoted their
health and well-being. The thesis also explores the patients’ experiences of
contact and care with health professionals and whether these encounters could
increase their feelings of better health and well-being.
The findings concerned 35 individuals diagnosed with HNC, revealing their
experiences of what they thought promoted their health and well-being and their
opinions of what could enable them to increase control over and improve health.
Their connection with enabling, i.e. providing someone with the ability or
means to do something (Soanes & Stevenson, 2004) was important to their
success in experiencing health and well-being and the process of taking control
over a new life situation. This process of empowerment, i.e. the goal of health
promotion (WHO, 1986), was an ongoing process of contacting and using their
inner strength; their internal ability or skill to motivate action. Further, enabling
was associated with external connection to environmental factors e.g.
relationship to family/friends, health professionals, nature, hobbies, and
activities that stimulated patients to engage in processes to move forward,
believe in a future, and take command over everyday life.
33
The comprehensive understanding gained from 53 interviews with 35
purposefully selected patients (31 from Sweden and one from each of the other
Nordic countries) revealed that living with HNC was like living on a virtual
rollercoaster, but still having strong beliefs in the future. The patients
experienced life as a constants series of ups and downs. On one hand, fighting
day and night with HNC’s life-threatening impact and the side-effects of the
treatment or tumour growth, e.g. breathlessness, and bleeding. On the other
hand, making it through the ‘downs’ helped the patients believed in the future,
since it gave them an enhanced feeling of confidence in their ability to orient
themselves towards health and self-empowerment. In a way this correspond to
Antonovsky (1987) research when he put forward that as long as there is breath
of life in us, we are all to some degree healthy and we are always during our
lifetimes moving between two extremes of ease and dis-ease on the health
continuum.
Perhaps this interpretation of life on a symbolic rollercoaster is not exceptional
and could be experienced by many people, with or without a sickness. Many
people struggle with life-threatening diseases combined with treatment
complications and an insecure future, e.g. people with diverse forms of cancer or
other chronic diseases. For example, Brännström’s (2007) research on living
with severe chronic heart failure in palliative advanced home care was
interpreted as life on a rollercoaster. However, the interpretations of
Brännström’s research and of the 35 patients that participated in my study are
very divergent. Perhaps this difference can be attributed to the researchers’
interests and perspectives, e.g. my research takes only a single perspective (the
patients’), while Brännström’s takes three perspectives (the patients’, nurses’,
and close relatives’). Another important factor could be the researchers’
perspectives (pathogenic or salutogenic) in interpreting the findings. Although
the participants in this thesis had numerous physical symptoms and experienced
many ‘ups and downs’ they tried (and often succeeded) to repress negative
feelings to make life bearable. It appears that positive thinking was of central
importance in helping the participants maintain a positive self-image and hope
for the future. Positive attitudes might have originated from the willpower to
fight the disease, or might have been a way to feel better. De Raeve (1997)
describes positive thinking as a way to take responsibility for prevention of and
recovery from cancer, i.e. one strategy to cope with cancer and its treatment. But
positive thinking could also place another burden on the already afflicted person,
i.e. if you think positive enough the cancer can be cured (cf. McCreaddie et al.,
2010). Being positive might be part of a process where patients actively seek
meaningful and therapeutic interactions with health professionals, thereby
gaining important knowledge (ibid.). Brännström (2007) revealed no
interpretations about the patient’s inner strength and capacity to take control
34
over the illness. She did, however, reveal the importance of support from
relatives and health professionals.
For some of the patients living with HNC, the disease was understood to be on a
permanent illness trajectory that changed their life into a state of physical,
emotional, social and existential captivity. This translated into a difficult
everyday life, especially highlighted by the findings showing their aloneness,
even when cohabiting or having close relationship to next of kin and/or friends
(paper IV). This corresponds to other research showing that patients on a cancer
trajectory often experienced uncertainties, vulnerability, and isolation
(Halldórsdóttir & Hamrin, 1997). In addition, HNC causes potentially lifethreatening problems, e.g. involving respiration, nose bleeding, choking while
eating and swallowing, and it also causes lifelong physical problems, e.g. altered
communication and changed appearance (Ledeboer et al., 2005). However, no
research was found that addressed the findings on patients’ feelings on an
altered relationship to their body, which confronting them with embarrassing
behaviours, e.g. phlegm stagnation resulted in a need to repeatedly clear the
throat and spit (papers I, III, IV). These problems appeared to have a huge
impact on patients’ entire everyday life and could correspond to Anderson &
Franke’s (2002) research on HNC’s bodily impact that seemed to confront these
patients’ with both a psychosocial and existential struggle.
The findings stress the importance of meeting soul mates, since the patients
experienced a substantial difference in talking to and receiving information and
support from someone that had life experiences with this illness (papers III, IV).
Perhaps because of the changes in their appearance, eating, and speaking,
patients could need to meet others with experience of similar problems. If you
experience something you have a deeper knowledge and understanding of the
problem, e.g. changes in everyday life, and how different periods in the
trajectory could be experienced. Trillin (1981) emphasised that having cancer
signifies entering the land of the sick, where those from the land of the well
could visit, but always leave. Birkhaug et al. (2002) claimed that active
memberships in patient organisations improved patients’ well-being, and
perhaps these meetings could alleviate some of their loneliness and help regain
power and control over everyday life. Still, as Mok et al. (2010) point out, there
is no medication for alienation, loneliness, despair, meaninglessness, and fear of
death. Hence, findings on patients’ endeavours to find meaning in life through
love, hope, confidence, and belief in the future, i.e. to reach the best possible
well-being to achieve new life goals, were important (paper IV). Mok et al.
(2010) also stressed that it was essential for the patients’ emotional and spiritual
well-being to meet health professionals that showed caring attitudes and
delivered expert information with cheerfulness and kindness.
35
It was indispensable for patients to trust in their own strength and abilities of
dialoguing with the inner self, i.e. internal enabling, which transformed and
improved their self-esteem and enhanced their self-determination (papers I, II,
III, IV).
HNC can cause discomfort and suffering since it is located in the body’s most
visible area. This could either enhance personal growth or damage or destroy
self-esteem (Ledeboer et al. 2005). Lindenfield (1996) suggested that if a person
believes that he/she is worthless or ugly it could generate negative feelings and
depression. Mok et al. (2004) asserted that if health professionals focus on
resources rather than health deficits this could more effectively influence the
individuals’ thoughts and attitudes in a positive way. Feber (2000) highlighted
coaching in intrapersonal skills as a means of promoting optimum health and
well-being for the individual with HNC. Dropkin (1999) showed that self-care
could be beneficial and reduce anxiety in disfigured persons since it helps
patients find their true self and adapt to their new body image. This corresponds
to research by Turpin et al. (2009) showing that patients with HNC went through
an active process to retain a positive sense of self when the illness impact altered
their relationship to their own body.
It was as the individuals improved their sense of self-worth when they took
control over their new life situation, and this helped them break many years of
lifestyle habits, e.g. smoking and alcohol consumption (paper III). Adopting
new lifestyle habits required inner strength and will, but was not an easy task
(cf. Nygren et al., 2007). The findings revealed that patients’ inner strength
potentially gave them a greater will to live, to manage their situation, and to be
open to looking forward and continuing their life. It could be valuable for health
professionals to draw on these findings when following public health advice
(NIPH, 2005), e.g. to start smoking cessation programmes in HNC care (Sharp
& Tishelman, 2005), and begin to find out if patients are motivated to make
lifestyle changes. These findings also correspond to the research of Mok et al.
(2004) regarding patients’ motivational process, process of seeking mastery, and
transformation of thoughts. The findings also revealed that the patients’ often
used their power of mind when meditating and praying (papers III, IV).
Meditation and/or prayer, i.e. self-transcendence are shown to be helpful in
drawing on one’s own strength and health resources (Teixeira, 2008). Some
patients expressed high self-confidence in spirituality and being present in the
here and now, with no fear of dying – hence, finding meaning in life by thinking
that death was a transition to another state of being (paper IV). Acceptance of
death as a process in life, and letting go, corresponds to the research of Mok et
al. (2010) claiming that inner spiritual well-being is attained from having faith
and being aware of possibilities in life and after death. The findings revealed
that integration of spiritual and personal beliefs lead to peacefulness, harmony,
36
and spiritual growth. In addition, it is known that patients with HNC often use
complementary and alternative methods, such as spiritual therapies, herbs and
vitamins, physical therapies, and body/mind therapies (Molassiotis et al., 2006).
Frenkel et al. (2008) advocate integrating these methods into health care and
advise health professionals to engage with, support, and give appropriate advice
to patients wanting to complement their medical treatment with such
alternatives.
The findings revealed that some patients found a glass of wine or beer to be
beneficial and relaxing (paper III). This correspond to Allison’s (2002) research
showing that using (as opposed to abusing) wine during recovery can lead to
better physical and role functioning, less fatigue, and fewer feelings of illness.
This way of caring for and encountering patients with HNC requires health
professionals to be attentive, listen to and respect patients – and to relinquish
some of their own power to trust in, and dare to support, patients’ actions and
wishes.
Good interpersonal relationships and emotional support, i.e. external enablers
such as next of kin or friends, were essential. It was understood to be vital to
have someone to talk to, day and night – perhaps particularly vital when
patients experienced new illness and acute, life- threatening problems in
everyday life (papers III, IV). Again, this corresponds to the research of Mok et
al. (2010) on the necessity for patients to have well functioning relationships and
connection with next of kin and friends. However, research also shows that the
relationship between two individuals could be experienced as difficult, due to a
dependency on support that one might need from the other (cf. Cutrona, 1996).
The findings also support this, revealing strained relationships and changed life
situations for some of the participants and their family as an entity. It could be
altered role function at home, and some participants felt rejection from next of
kin. Vickery et al. (2003) highlight that partners could report greater distress
than the sick person they care for. Additionally, the findings revealed
transformed emotional and sexual relationships, particularly amongst the women
interviewed for this thesis (papers III, IV). Manne and Badr (2009) confirm that
relationships and intimacy seem to be more important for women to discuss.
These problems with relationships might relate to the patients’ problems with
phlegm production or mouth odour, which both parties could experience as
unpleasant. Millsopp et al. (2006) stressed that this cancer also could be
experienced as more traumatic than other cancers because of the visible
disfigurement involved. The findings revealed high psychological stress and
vulnerability in the patients, partly because of how they viewed the life situation
of their next of kin. The patients were understood to have a difficult everyday
life, and it was essential for them to take an active role, to be responsible for
their own self-care, and seek support from next of kin or good friends when
37
needed (papers II, III, IV). Humphris (2008) discussed the need for continuing
support from psychologists. The findings also presented various confirmations
on the importance of long-term support for next of kin (cf. Wright & Leahey,
2005). Co-operative care, which seems to alleviate fear by providing self-care
education in a home setting, appears to be a valuable approach. This approach
has been shown to conserve health resources and improve and facilitate
communication amongst the family and health professionals involved in care
(McLane et al., 2003). In recent decades, interest has been growing in psychooncology and emotional well-being for patients and their next of kin (Hodges &
Humphris, 2009). Training courses for patients and next of kin, e.g. on learning
to live with cancer, seemed to be valuable for all who took part in them and
were reported to help empower patients to take greater control over everyday
life (papers I, III, IV). The courses were based on a teaching-learning process
with an interactive and systematic bottom- up approach (Grahn et al., 1999) that
could help patients and their next of kin choose topics they wanted to discuss,
ultimately empowering and supporting them in achieving defined health goals.
The findings also revealed the patients’ eagerness to learn and preserve
independence and autonomy and to practice self-care (papers I, II, III, IV). This
corresponds to research by Mok et al. (2004) suggesting that when patients
owned knowledge and skills and practice self-care, they could accept the illness.
In turn, this could lead to feelings of better health and well-being.
All the participants narrate that they received strength and felt good when being
outdoors and following the changes in nature, i.e. also an external enabler.
Nurturing plants to survive and blossom also gave patients a sense of hope for
the future; to be alive despite their sickness (papers II, IV). Ottosson and Grahn
(2005) emphasise the link between nature, health, and healing. In health
services, this means taking responsibility for creating a healthy care
environment for everyone who visits a care facility or is hospitalised (WHO,
2004). Creating an atmosphere that is pleasing for the eyes, and combining this
with easy access or views to parks and green spaces, enhances everyone’s wellbeing; patients, next of kin, and health professionals. In addition, Maller et al.
(2005) assert that nature can be viewed as an unused public health resource
since it has the potential to increase people’s sense of well-being. Hence, it
appears that parks and natural areas are potential ‘gold mines’ for a population’s
health promotion.
Hobbies and cultural activities suited to the situation are other external enablers,
and by practising these activities over and over again the patients experienced
control and power over everyday life (papers I, III, IV). This corresponds to
other research showing, e.g. that art therapy could decrease anxiety and facilitate
recovery and power over everyday life for women with breast cancer (Oster et
al., 2006). In addition, the use of music in health care is known to promote
38
feelings of power, enhance effects of analgesics, and decrease pain, anxiety, and
depression (cf. Siedliecki & Good, 2006).
Working relationships with respectful and competent health professionals could
encourage a patient’s activity, participation, co-operation, and self-care. It was
also understood that positive human encounters could contribute towards
counterbalancing the often unequal position that patients sometimes felt in
health care. This was named health promoting activity (paper I) or health
promoting contact (paper II). In this context, the patients experienced health
professionals to be available, engaged, respectful, and validating and to express
knowledge, competence, solicitude, and understanding. Research by Ong et al.
(2000) confirmed that a good interpersonal relationship between the patient and
health professionals could be viewed as both “means and end” in an
interaction/contact. These health promoting contacts could, to a certain extent,
correspond to research on supportive clinics that could help patients with
emotional and practical needs (Larsson et al., 2007; Wiederholt et al., 2007;
Wells et al., 2008). Nevertheless, the findings showed that, especially before and
after treatment, the patients felt abandoned and lost amongst all the members in
the multidisciplinary team that were involved in their care (papers II, IV). These
findings suggest that the current healthcare organisation is characterised by
large-scale production that is function oriented – not a patient-process-oriented
organisation. It seems that a healthcare organisation with supportive clinics must
be developed and be accessible 24 hours a day. Care needs to focus on the
unique patient and be designed as individually tailored, patient-centred care,
throughout the lengthy trajectory of illness (cf. IOM, 2000). Lee et al. (2008)
tested the IOM recommendations, but found a need for development of
interpersonal communication and practise-based learning for health
professionals working in the HNC care context.
To improve the organisation of HNC care, it should develop in collaboration
with patient organisations (Birkhaug et al., 2002), health professionals (SSF,
2008, SBU, 1999), and policy makers (NPH, 2009). Patient organisations are
vital because of their potential influence as the voice for an entire group of
patients. Such organisations can raise demands on behalf of their members, who
may have less of an opportunity to speak up in society due to the impact of the
illness on their ability to communicate (Birkhaug et al., 2002).
It is, however, known that these patients often have long-lasting and slowly
progressing health problems (Bjordal et al., 2001). In addition, the findings
showed a lack of individualised, tailored care from a salutogenic perspective. It
was also understood that some patients experienced discouraging obstacles
against better health and feelings of well-being, and these vulnerabilities seemed
to cause low self-esteem and low self-performance (papers III, IV). This
39
highlights a) the need for easy access to care with a salutogenic focus and to
long-term psychological rehabilitation and b) the need for good contact with
health professionals who follow patients throughout the entire course of their
illness trajectory. Rehabilitation services should also involve any next of kin
engaged in a patient’s everyday life and care. Fillion et al. (2006) proposed
using an oncology patient navigator to ensure that patients’ interests and
concerns remain in forefront, along with values that empower the patient and
humanise care. Such navigators have been shown to enhance the support for
HNC patients throughout treatment, recovery, or cancer progression and death
(Fillion et al., 2009).
The findings also indicated that the patients experienced many not health
promoting contacts (paper II) and a lack of health promoting activities (paper I).
Such encounters could lead to feelings of ill-health and powerlessness. Some
health professionals seemed to be insensitive to the patients’ vulnerabilities and
did not listen to or respect patients’ opinions, reflecting a superficial and
paternalistic view of mankind (papers I, II, IV). These findings correspond to
the research by Halldórsdóttir & Hamrin (1997) about caring versus uncaring.
When patients perceived that nurses were incompetent in some way, (e.g.
nonchalant towards the patient as a person, or uninterested in the patient’s
competence) this created an obstacle in the patients’ well-being and recovery.
Findings by Wilkinson et al. (2003) emphasise that professionals working in
health care, especially in cancer care, must have special skills such as being an
attentive listener, i.e. open for patients’ questions and narratives.
One challenge could involve being responsive to behaviour and psychosocial
responses to bad news and delivering up-dated information in a series of
processes along the cancer trajectory (Tobin & Begley, 2008). Newell et al.
(2004) confirm this and emphasise information, support, and advice all the way
through the postoperative period after a surgical procedure. Leydon (2008)
points out that patients want health professionals to openly share bad news and
uncertain information, but to do it with sensitivity. A recommend approach was
to follow up uncertain or bad news with slightly better information to avoid
diminishing opportunities for hope or future optimism (ibid.).
Patients experienced many hindrances in accessing health services, particularly
the first contact with health professionals in the front line of care was
problematic, and often the patients felt they were not believed when telling their
illness history (paper II). Carlson et al. (2005) highlight the dynamic and context
specific nature of communication, and research shows the complex
communication problems that patients with HNC can experience (Happ et al.,
2004). Semple and McGowan (2002) stress the importance for health
professionals to check that the information supplied has been understood and to
40
be ready to provide further information if necessary. Patients with HNC need
tailored information and clearly written information in a readable form and
without jargon, since suitable information could promote collaborative decisions
(ibid.). Patients also experienced being in a disadvantaged position due to their
vulnerability and dependence when seeking care (papers I, II). Research
confirms the inequity of power in health care, due to the patient’s dependency,
and this could be an obstacle in interpersonal relationships between patients and
health professionals (Ong et al., 2000).
Thorne at al. (2008) discuss how ineffective communication can lead to delay in
seeking care, failure to access appropriate care, and early withdrawal from
treatment. Research has shown that some resilient HNC patients exhibited a
profound reluctance to ask for help, despite extensive physical and emotional
trauma (Wells, 1998). This could correspond to the patients that choose the
wellness-in-the-foreground perspective, as described in the Perspectives Model
of Chronic Illness, where some patients have trouble receiving the services or
the attention they need (Thorne & Paterson, 1998; Paterson, 2001). Then
patients struggle to maintain a positive attitude, keep active and independent,
and try to live everyday life as normally as possible (cf. Kvåle, 2007). These
strategies aim to maintain hope and to distance one’s self from certain aspects of
authenticity. However, this disaffection should not to be confused with rejection
and non-acceptance; it entails strategies to maintain some sort of normality
(Paterson, 2003). Health professionals are accustomed to working with theillness-in-foreground perspective and are skilled in supporting patients with
information and teaching them how to manage their illness (papers I, II, III,
IV). HNC patients undergoing treatment wanted as much information as
possible, both good and bad, especially about the treatment and its side-effects
(Semple & McGowan, 2002). On the other hand, patients had expressed being
overloaded with information they do not understand (ibid.). Research by Thorne
et al. (2006) revealed that health professionals at times provide patients with
‘hard-core’ information as part of their professional duty and not as a result of a
sensitive dialogue.
The-illness-in-foreground perspective was understood to be good in the context
of this thesis if patients had the strength and motivation to learn. However, some
health professionals could find it puzzling when a patient talks of well-being
while having a multitude of problems. The Shifting Perspectives Models of
Chronic Illness has elements of both the wellness and the illness perspective,
and represents the patients’ viewpoints, perceptions, hope, attitudes, and life
experiences. Hence, it appears to be a valuable tool in this care context. It
enables health professionals to understand the patients’ perspective at any given
time and make suitable care and support available to patients with either
perspective (Paterson, 2001).
41
It was understood that some patients experienced unemployment as distressing
(paper IV) while others, in contrast, felt threatened by their employer and felt
forced to continue working (paper IV). It is well known that loss of occupational
identity can be a source of significant anxiety and depression in everyday life
(cf. Peteet, 2000). Research has shown that post-treatment patients frequently
experienced becoming employed because of their unique problems regarding,
e.g. eating, speaking, pain, fatigue, and appearance (Buckwalter et al., 2007).
Liu (2008) stresses that thoughtfulness must be exercised when supporting
patients to continue working, and they need rehabilitation that is comprehensive
and takes into account their contextual situation and burden of everyday life
(Tschiesner et al., 2009). The findings highlight the need for health professionals
to deepen their understanding of the patients’ everyday life with HNC in relation
to health, illness, and suffering (papers I, II, II, IV). A vital factor for patients
with chronic diseases is to have a well functioning everyday life (cf. Kickbusch,
2007).
The patients experienced social and economic strains (paper IV). Semple et al.
(2008) addressed the increased cost of living with HNC, e.g. medicine, special
diets, and lengthy treatment periods with related travel expenses, and inability to
work. The findings also revealed long lasting side effects of treatment, e.g. jawand tooth-related pain (papers I, II, IV). Adell et al. (2008) confirmed that some
of the former HNC patients could never be rehabilitated to overcome the
inconveniences in the jaw and teeth, and in those who could, it took years to
restore dentition. The findings in this thesis mirror the long-term struggle with
distress, pain, and social and economic hardship in the patients’ everyday life,
and reflect a demand for public health and psychosocial interest for this group of
patients. In recent years, health professionals in Sweden have raised criticism
towards the social system and the allowances for patients having different types
of cancer (SWEDPOS [Swedish Society for Psychosocial Oncology], 2010).
This association advocates that society and health services need to support
cancer patients and their next of kin with psychosocial care and rehabilitation of
good and equal quality at all stages of disease and survivorship. Their work
appears to offer a vital and necessary forum for health professionals in HNC
care to raise their voices more often and to be more involved in health and social
policy decisions.
Methodological considerations
A qualitative design was chosen to reach a deeper understanding of living with
HNC and to identify the experiences that patients felt promoted their health and
well-being. The study design also revealed their experiences of care and contact
with health professionals. This design was judged to be the most accurate means
42
to describe and explore the patients’ subjective truth and reality of their own life
experiences.
The four studies were based partly on different concepts related to health
promotion. This could be viewed as a threat to the internal conceptual validity of
the research as a whole. On the other hand, however, this conceptual variety
reveals the versatility of health promotion strategies and points of departure. It
also reveals how my own way of thinking about health promotion developed
during the research. My transformed view of the concept could be attributed in
part to the many years that elapsed between conducting the first study and
conducting the later studies. Another possible factor could be that society
changed during this period, as did the concept of health promotion.
Nevertheless, my approach towards the central concept of health promotion
remained consistent with several of the basic principles, e.g. participation,
partnership, equity, and inter-sector cooperation, but not always with others, e.g.
holism and empowerment.
During the first study my views towards the patients were quite objectified, i.e. a
person “within” a specified form and stage of HNC (e.g. a patient with stage-4
oropharynx cancer). This was accompanied by my ‘mental image’ as a nurse of
these patients’ common problems and needs. My standpoint on the concept of
health promotion came from this traditional biomedical and pathogenic view,
i.e. nurses should inform and educate patients about risk factors for acquiring
diseases and should advise patients to change to a healthier lifestyle. For
instance, see the suggestions in paper I; that the nurses could identify and focus
on those individuals who need to alter their lifestyle.
However, my understanding about everyday life with HNC and individuals’
inherent capacity grew. Hence, in the later studies, my views on the concept
health promotion changed, centring more on the individual’s point of view and
experience of living with HNC. As a result, the concept shifted towards a more
subjective-oriented understanding of the need to focus on the affected
individuals’ own experiences of what promoted health and well-being. This
represents a shift from the traditional “top-down” approach to a “bottom-up”
approach integrating the individual’s own capacity to take control and become
empowered. When health professionals view the patient as a person – an expert
on his/her own situation and co-producer of his/her own health – it strengthens
the patient’s confidence in drawing on their own resources to improve their
personal health and well-being.
The studies in the thesis focused on 35 patients with HNC. Data were collected
via individual, audio-taped, semi-structured, qualitative interviews. This semistructured interview approach seemed appropriate since the aims were to
43
identify areas that each participant would cover, e.g. what promotes health in
everyday life or what promotes health in contacts with health professionals.
However, the questions were open-ended so participants could speak without
restrictions about these topics and could also initiate new topics.
Different methods and analyses, all sensitive to human experiences, were used
to interpret the data. Paper I used the critical incident technique (Flanagan,
1954); paper II used thematic qualitative content analysis (Baxter, 1991); paper
III used latent qualitative content analysis (Berg, 2004); and paper IV used
interpretative descriptive analysis (Thorne et al., 1997; Thorne et al., 2004).
Despite some differences between the four analytical methods used, they
followed basically the same approach throughout the studies. First, the
researcher(s) read the full text of each interview to determine the most important
aspects of the phenomenon under the investigation. Second, the researcher(s)
developed a more structured thematic analysis of every interview when
searching for meaning units/codes in sub theme. Finally, the researcher(s)
examined the sub themes in the context of more superior themes, all at different
levels of interpretation.
Two variations of qualitative content analyses method were used in the second
phase of collecting data (papers II, III), and steps were taken to assure
reliability of the data collection, i.e. after three test interviews a new semiconstructed interview guide was developed to cover questions addressing topics
in both papers. The thematic content analysis (Baxter, 1991) used in paper II is
obviously similar to the latent content analyses (Berg, 2004) used in paper III.
In both analyses the approach involves searching for patterns or themes, i.e. the
deep structural meaning conveyed by the message. As a result, the findings in
those articles appear to fall within the same interpretation level.
In the final study, the interpretative descriptive analysis (Thorne et al., 1997,
2004) was somewhat different since it started with a pre-analytic understanding.
The difference between the pre-analytic understanding and my findings was that
the patients’ experiences of what it meant for them personally were complex and
not comparable since their everyday life was now so different. One weakness
could be that my discussion of the findings is based on the similarities instead of
the different individual themes and sub themes for the unique six patients.
Further to ensure the quality of the findings, methodological considerations have
been considered in terms of the five criteria for trustworthiness: credibility,
dependability, transferability, confirmability, and authenticity (Lincoln &
Guba1985; Guba & Lincoln, 1994). The central aspect is to confirm that the
findings truthfully mirror the experiences and viewpoints of the participants,
rather than perceptions of the researchers (Polit & Beck, 2008). Lincoln & Guba
44
(1985) highlight that if credibility is recognized, consequently so will
dependability. Therefore, the aspects undertaken to guarantee creditability also
serve to guarantee dependability.
Credibility refers to confidence in the data and their interpretation. The strength
lies in the process of purposively selecting the patients – in consultation with
medical and nursing staff involved in their care – and following the criteria, i.e.
patients’ with diverse HNC diagnoses, stages, and treatment. Although variation
in socio-demographics was not the most important criterion, it was important to
find patients with the willingness and interest to communicate and verbalise
their lived experiences (cf. Polit & Beck, 2008). Paper I makes reference to
strategically chosen patients, but it also conveys a purposive selection since the
interviewer worked in one hospital and therefore could ask some patients if they
would participate. A limitation could be the unbalanced sample in paper I (i.e.
17 individuals from Sweden and one from each of the other four Nordic
countries). Although the purpose was not to generalise or compare the findings
between countries, more participants from the same country might have given
more contextual data. In view of the research design, the data are not sufficient
to make generalisations based on the findings.
The patients’ gender and age differences are in line with data showing that HNC
is two to three times more frequent in men and most common in the group >50
years of age (Parkin et al., 2005). A weakness could be that although 54 persons
were invited, 19 did not agree to participate. It indicates that many of the
individuals did not want to participate. Nevertheless, those who did were eager
to contribute information about their experiences, and they provided rich
descriptions. It should be noted that three of the participants heard of the studies
and asked to participate. They contacted a nurse at the ward on their own
initiative (Paper II, III, IV). These participants all had severe speech difficulties
because of surgery and tumour growth, yet they gave concise information and
lengthy interviews.
The non participants were mainly men and younger people. Hence, a weakness
could be that the findings may not reveal the experiences of younger people and
people that did not match the selection criteria, e.g. confused or cognitive
disable patients that could not communicate their experiences.
Communication between the interviewer and the interviewee during the
interview situation may have influenced the quality of the data; since it is the
researchers themselves that serve as data-gathering and analytic instruments in
qualitative studies (Polkinghorne, 2006). However, bias could arise when
gathering data with help of critical incident techniques as the interaction
between interviewer and interviewee could be close and intense (Flanagan,
45
1954). To avoid this, the questions posed were as open as possible. The
participants could talk freely about the topic, and the interviewer thoughtfully
went back and forth between the questions in the guide (paper I, page 206).
Strength was that every interview were rich in content, quality, and meaning i.e.
they were experienced as open, profound, and emotionally charged, and no
problems were observed regarding the request to audio tape the interviews. The
patients’ showed an eagerness to contribute to the research, and together with
the relaxed atmosphere during the interviews this fulfilled the criterion of a
trusting and confidential relationship (cf. Polit & Beck, 2008). The interviewer
was familiar with the care context, and her interviewing skills progressively
expanded as she conducted more interviews. This was evident from the
interview transcripts. In the first study, she spoke and asked questions
frequently, but in the latter studies the patient’s voice dominated, and the patient
was often first to break the silence.
The patients always chose the interview site, and most interviews were
performed in the home. In-hospital interviews with inpatients were often shorter.
On the whole, interviews conducted in hospital were shorter, but more
convenient for outpatients who wanted to combine the interview with their
hospital appointment.
Since patients’ speech problems could potentially jeopardise understanding, at
times the questions were reformulated to achieve a shared understanding of the
core response to these questions and avoid misinterpretation or the possibility
that patients’ answered in a way they thought might please the interviewer.
Nine of the patients did not have Swedish as their native language. These
patients received a written inquiry in their own language (Nordic language), and
their interviews could include English words, notes of non-verbal interaction,
body language, and help from next of kin. Verbal input from next of kin was
taken into account only if the patient asked them to explain a word and gave a
nod of approval. However, these small contributions from next of kin seemed to
help; they not only elucidated and endorsed information, they also confronted
the patient to talk, often about things not mentioned previously.
Although the interview questions were asked in positive sentences, e.g. what
they felt promoted their health, the patients’ answers occasionally revealed
negative experiences (papers I, II). It seemed, if we wanted to understand or
know that something was good then we needed to confront it with the opposite,
and thereby reach a deeper understanding of the subject under study (cf.
Halldórsdóttir & Hamrin, 1997).
46
Other researchers have used this approach when obtaining both positive and
negative findings (cf. Söderberg, 1999). Looking at my findings in paper I (page
208) and the category the nurse showed personal consideration and the
subcategory the nurse showed empathy. The positive form conveyed that the
patient experienced the nurse as attentive, and she respected him: the nurse was
so calm and collected and sympathetic. The negative form conveyed that the
patient experienced that the nurses lowered his self-esteem by patronising his
integrity; the nurse was too good-natured, she felt sorry for me, I didn’t like it.
In paper II (page 266) the positive form in the theme receiving individualised,
tailored care conveys experiences of being confirmed and feeling secure; she
called the dentist to prescribe medication for thrush … I felt that I was well
taken care of. The negative form conveys the patient’s experiences of being
abandoned because no health professional wanted to take responsibility for their
care; they just remit patients from one place to another.
The purposeful sampling of participants that had the eagerness and interest to
verbalise their lived experiences yielded rich interviews, and the participants
appeared to feel safe and comfortable in revealing their often negative
experiences. Polit and Beck (2008) emphasise that when researchers have a
sense of what they need to know, then the use of purposive sampling could
strengthen a comprehensive understanding of a phenomenon. By searching for
disconfirming evidence and competing explanations the researcher can
challenge a categorisation or explanation (ibid.).
The value of repeating the interviews after a time was immense since the
interviewer’s understanding of the patients’ everyday life grew with this
extended relationship (paper IV). Further, a longitudinal approach gives you an
idea about the participants’ experiences over time and what it could mean for
them in the process of healing, learning, and continued empowerment. It allows
the researcher to revisit issues and discuss new areas that have emerged from the
data, and also allows the participants to discuss areas they may have forgotten or
decided to withhold during previous interviews (Polit & Beck, 2008).
Dependability concerns the stability of data over time and conditions, and was
assured by using semi-structured guides and the same interviewer to conduct
and transcribe all interviews verbatim. The verbatim transcripts allowed the
researcher to remain close to the content of the interviews, and thereby ensure
trustworthy and dependable interpretation. Different qualitative analyses were
chosen because of the richness and profoundness of the text, making it possible
to interpret the data on different levels (Burnard, 1995). Interpretation was an
ongoing process that began already when the patients described their everyday
life during the interview, and during the process they began to see and narrate
new connections, free of interpretation by the researcher (cf. Kvale, 1996). In a
47
way, the interviewer condensed and interpreted what the patient said and then
transmitted the meaning back, especially during probing. This also took place
during transcription when a new cognitive interpretation emerged.
Confirmability refers to objectivity and was assured when analyses and
interpretations were checked and discussed on a repeated basis with supervisors
and in seminar groups with researchers. Confirmability implies that procedures
were followed to ensure that the findings are rooted in the data and are not
resting on insufficient analysis or preconceived assumptions. A potential
limitation in paper I is the considerable overlap between categories, and the
analysis could have been more rigorous.
However, all over the studies transparency and credibility enable readers to be
“co-examiners” in gaining insight from analysing the patients’ quotations and
arriving at different interpretations. Sandelowski (1994) discussed whether
quotations should preserve every element of participants’ expressions, or be
“cleaned up”, e.g. to eliminate grammatical errors. In this thesis, the patients’
quotations have been translated into English, but presented as their own choice
of wording. A few minor revisions in grammar and vocabulary improved
readability.
Transferability refers to the extent to which qualitative findings can be
transferred or applied to other settings or groups (Lincoln & Guba, 1985). Yet it
could be considered successful if patients with HNC, and health professionals
working in this care context, recognise the descriptions and interpretations as
credible. However, the core question in transferability is whether it is logical to
carry out the innovation in a new practice setting. If some aspects of the settings
contrast with the innovation, e.g. regarding philosophy, clients, personnel, or
administrative structure, then it might not be sensible to try to apply the
innovation (Polit & Beck, 2008).
Reasonably, transferability could be considered successful if people with cancer
or neurological diseases, and who have similar severe communication and
swallowing difficulties, could recognise the descriptions and interpretations as
their own.
An important factor in promoting transferability is the quantity of information
the researcher presents about the context of their studies. Kvale (1996) stated
that a post-modern shift towards the search for general knowledge, and the
individually unique, is being replaced by the importance of the heterogeneity
and contextuality of knowledge. ‘Thick description’ refers to a rich and
thorough description of the research settings, performance, and approach (Polit
& Beck, 2008). Perhaps the contextual descriptions are thick enough for the
48
purposes of this thesis, and consequently could contribute to the reader’s
capability to assess whether findings would be applicable to other groups or
contexts.
Transferability is analogous to generalisability. Naturalistic generalisation rests
on personal experiences and derives from tacit knowledge of how things are and
leads to expectations rather than formal predictions (Kvale, 1996). The findings
show that participants’ experiences and many quotations and interpretations of
the findings are generally applicable to everyone, regardless of having HNC,
e.g. the importance of emotional support from family and friends, and the
importance of nature and culture in health. Analytic generalisation involves
reasoned judgement about the extent to which findings from a study can be used
as a guide to what might occur in another situation, and is based on similarities
and differences of the two situations (Kvale, 1996). However, how much should
the researcher formalise and argue generalisations, or could this be left to the
reader (ibid.)? Kvale (1996) put forward Freud’s therapeutic case stories as
examples for reader generalisation, since Freud’s descriptions and analyses are
so colourful and persuasive that readers today still generalise many of the
findings to modern cases.
Authenticity refers to the extent to which qualitative researchers honestly and
truly show a variety of diverse realities in analysing and interpreting their data
(Guba & Lincoln, 1994; Polit & Beck, 2008). This was assured since many of
the findings and interpretations convey diverse shades of feeling in reference to
patients’ experiences and what it means to live with HNC. In many ways, the
text invites readers into a vicarious experience of the lives being described, and
enables readers to expand their sensitivity to the issues being depicted. Thereby,
perhaps the reader can reach a deeper understanding of the patient’s life, e.g.
when reading quotations that contain non-verbal sounds (such as clearing the
throat, spitting, hoarseness, or deep sighs) that could also mirror their own illhealth mood or feelings.
How people remember things could present a potential weakness of the studies.
For participants in paper I, the time span from diagnosis to interview varied
from 4 months to 14 years. Being stricken with cancer is an extremely traumatic
experience accompanied by feelings that your whole existence is threatened
(Carnevali, 1990). It is known that memory can change, but people always
remember the critical incidents that occur (cf. Christianson, 1994). Flanagan
(1954) asserted that the authenticity of data collected via the critical incident
technique is high since participants narrate real, critical, events from life.
Research shows that it is easier to remember negative incidents since often they
are experienced as more intense and distinct than positive incidents (cf.
Christianson, 1994).
49
Conclusions
The aims of this thesis has been to reach a deeper understanding of living with
head and neck cancer and to identify the experiences that patients felt promoted
their health and well-being. It further conveys the patients’ experiences of care
and contact with health professionals, and examines whether these encounters
could increase patients’ feelings of better health and well-being.
• The deeper understanding of 35 patients’ everyday life with HNC was
expressed as living on a virtual rollercoaster, with many ‘ups and downs’,
i.e. interpreted as living in captivity, day and night, because of the
symptoms. However, when searching and finding inner strength, patients
could experience better health and well-being, and this could generate
strong beliefs in the future.
• The patients’ inner strength potentially enhanced their will to live, to
handle their situation, and to be open towards continuing with a changed
life.
• Emotional support and good interpersonal relationships with next of kin
was important, 24 hours a day, i.e. someone who could ameliorate the
‘downs’ and support the ‘ups’. Other findings reflected the concern that
patients have for the strained life situation of their loved ones, and the
changes in emotional and sexual relationships experienced by the women
interviewed.
• The patients’ gained a sense of strength not only from nature, but also
from hobbies and activities that enhanced their control and power over
everyday life.
• Some patients experienced vulnerability and psychological stress, e.g. due
to changed appearance, transformed eating and speaking ability, and the
inconvenience of being in a dependent position.
• Some patients’ felt that barriers hindered their access to health care. In
particular, they found it difficult to make initial contact with health
professionals working on the front line. An important finding in this
context is that many of the patients felt they were not being respected or
believed when telling their illness history.
• The patients’ had feelings of exposure and vulnerability in encounters
with health professionals. Health professionals’ views of mankind, roles,
and behaviours (e.g. body language) could either strengthen or weaken the
patients’ health and well-being. The findings correspond to those from
other cancer research.
• The patients’ had different strength to handle their altered life situations.
However, the findings highlight that nearly every patient felt, at times,
50
lost and abandoned in health care during their long-term illness trajectory,
especially before and after the treatment phase.
• Participation in patient organisations and courses (e.g. learning to live
with cancer) was found to be valuable in lessening the patients’ isolation.
• Learning and practising self-care seemed to lessen patients’ dependency
and increase their autonomy and self-worth.
Implications for health promotion
The findings seem to confirm that health promotion is not something that is
done for or to people; it is done with people, either as individuals or in groups.
This correspond with the basic principles in health promotion that is
participation, partnership, empowerment, equity, holism, inter-sector
cooperation, sustainability, and the use of multi-strategy approaches (cf.
Nutbeam, 1998). These principles are regularly updated, since health is shaped
by individual factors and the physical, social, economic, and political contexts in
which people live. For example, needs assessment, evidence-based health
promotion, and self-efficacy are new terms added to the mix (Smith et al.,
2006). Beliefs in the latter, i.e. self-efficacy, determine how people feel, think,
motivate themselves, and behave. In other words, it is the effort people expend
and how long they persist in the face of disadvantage and adversity (ibid.).
In health care, patients need easy access, coordination, continuity, support from
trained professionals and psychosocial rehabilitation in a patient-centred
organisation. Supportive clinics could give patients, and their next of kin, longterm emotional, psychological, and practical support throughout the lifethreatening and lengthy illness trajectory of HNC. Positive human encounters
could help counterbalance the patients’ unequal position in health care and
strengthen patients’ activity, participation, and co-operation, e.g. in smoking or
alcohol cessation.
Maybe health care and health professionals need to place greater focus on
salutogenic approaches, and receive further education in the bottom-up approach
that starts from the patient’s individual strengths and health resources. Such an
approach would put patients in a better position to choose what they want to
discuss and share, and ultimately could help empower them to achieve their
defined health goals. The Shifting Perspectives Model of Chronic Illness could
be useful to implement and evaluate in this context since the model seems to be
suitable because of its elements of both the wellness and illness perspectives.
51
The findings could indicate that there is a need of greater support for the more
vulnerable patients who live alone without nearby next of kin or friends and who
experience severe emotional and existential confinement. Patient organisations
that give a voice to this group of patients in society also need to be supported.
There appears to be a need to improve communication strategies and devices to
facilitate patients’ contact with the care system. Such strategies would include
continuing education in communication for health professionals working with
HNC care. Co-operation needs to improve between patient organisations, health
professionals, and politicians in efforts to enhance economic, social, and health
security. This includes support to help patients continue working and to meet
needs for long-term rehabilitation.
Health care services need to take a greater interest in making cultural activities,
arts, music, libraries, cafés, etc accessible to patients. Greater interest and action
is needed to create healthy care environments for everyone who visits a care
facility or is hospitalised. This includes easy access and comprehensive planning
that takes into account secluded, quiet, relaxing rooms and views of parks and
green spaces for patients and their next of kin.
Further research
Health and health promotion is an integral part of nursing (SSF, 2008), and the
findings in this thesis could be valuable in nursing and oncology practice; in
rehabilitation and in palliative care. Conceivably these findings could be a
starting point for further research in this important and demanding field. More
qualitative studies could be done in this area to heighten awareness and create a
dialogue about the concept of health promotion in HNC. For example more
research needs to address the salutogenic factors that promote feelings of better
health and well-being and generate strength and power for patients in a
vulnerable and dependent position. More research is needed to explore whether
spiritual growth promotes feelings of better health and well-being in people with
HNC.
Research should focus on the next of kin’s perspectives on what promotes health
and well-being and what gives them strength in their 24-hour emotional support.
Further gender research needs to investigate emotional and sexual relationships
between couples, especially from the woman’s perspective. Additional research
from the perspective of health professionals should investigate what promotes
their health and well-being and what gives them strength and power in their
daily work as they encounter HNC patients and the next of kin.
52
Further research into new technologies and specific communicative devices in
this care context could facilitate patients’ contacts with others. Also, the
working situation of patients and the impact of long-term, post-treatment side
effects, e.g. eating and communication problems need further scientific
investigation.
More quantitative studies could be done when testing hypothesis for example: Is
there an association between patients with HNC that have experienced better
health and well-being and being treated by nurses trained in bottom up
approaches. However, an important issue is how we as researcher might
influence health professionals to implement valuable research results in practical
settings qualitative or quantitative. For example by applying in clinical practice
the knowledge gained from evidence-based research into clinical health practice
such as the Sense of Coherence studies (Langius et al., 1992, Antonovsky, 1996)
and Quality of life studies (Aarstad et al., 2007, Rogers et al., 2008, Rogers et
al., 2009).
53
Svensk sammanfattning/Swedish summary
Att leva med huvud- och halscancer: främjande av hälsa
och välbefinnande i vardagslivet
Kroniska sjukdomstillstånd såsom cancer räknas numera till de stora
folksjukdomarna och för personer med huvud – och halscancer är vikten av ett
fungerande vardagsliv en ofta förbisedd folkhälsoutmaning. Avhandlingens
övergripande syfte var att få en djupare förståelse för vad som främjar hälsa och
välbefinnande i vardagslivet för personer med huvud – och halscancer.
Ytterligare ett syfte var att utröna huruvida vården och vårdpersonalens
bemötande bidrog till att öka upplevelsen av hälsa och välbefinnande.
God hälsa på lika villkor för hela befolkningen är det övergripande målet med
folkhälsoarbetet. Folkhälsoarbete innefattar planerade och systematiska insatser
för att främja hälsa och förebygga sjukdom. En tydlig intention i folkhälsoarbete
är att försöka påverka frisk-, skydds- och riskfaktorer samt struktur och
miljöförhållanden som bidrar till en positiv hälsoutveckling. Insatserna kan vara
samhälls- grupp- och individinriktade. Avhandlingens fokus är på individnivå
och utgår från ett salutogent synsätt där inriktningen är på hälsofrämjande
faktorer. Att leva med en kronisk sjukdom som huvud- halscancer innebär att
leva med en stor och tung sjukdomsbörda som påverkar även närståendes
vardagsliv. Då vården ofta har fokus på sjukdom och problem kan patienter
uppleva maktlöshet, oro och inre stress vilket i sin tur kan öka patienternas
känslor av illabefinnande. Det förefaller därför att det finnas ett ökat behov av
att fokusera på vad som främjar hälsa och välbefinnande för patienter med
huvud – halscancer.
Incidensen för huvud- halscancer i Norden årligen är cirka 4,500 personer och
sjukdomen räknas som den femte vanligaste cancerformen. Män insjuknar två
till tre gånger oftare än kvinnor. Sjukdomen är vanligast efter 50 års ålder och
den blir vanligare i takt med stigande antal äldre i befolkningen. Dessutom leder
en högre överlevnad till en ökad prevalens av kronisk huvud –halscancer i
befolkningen.
I dagens vård ställs ett ökat krav på att hälsofrämjande insatser bör integreras i
hälso- och sjukvården och att de skall vara en självklar del i behandlingen. Hälsa
kan ses som en resurs och att ha hälsa kan för en person med huvud- halscancer
54
kan innebära upplevelsen av att må bra och fungera i vardagen, relaterat till om
han/hon kan nå sina uppsatta livsmål under rimliga förhållande.
Världshälsoorganisationens (WHO) s.k. Ottawa Charters riktlinjer betonar
människors egen aktivitet och förmåga att ta kontroll och makt över sin
sjukdom. WHO beskriver följande grundläggande element i hälsofrämjande
arbete: empowerment, jämlikhet, partnerskap, samarbete, delaktighet i
samhället, självbestämmande, ömsesidigt hjälpande och delat ansvar.
Avhandlingen omfattar fyra delarbeten baserade på kvalitativa individuella
intervjuer med 35 personer med huvud- halscancer. Data insamlades vid tre
tillfällen och den första studien genomfördes i Norden (delarbete I) med 17
deltagare från Sverige och en deltagare från var och en av de övriga fyra
nordiska grannländerna. Övriga studier genomfördes i Sverige (delarbete II, III,
IV). I delarbete II och III deltog åtta personer (samma individer) och i delarbete
IV deltog sex andra personer. Samtliga 35 deltagare var speciellt utvalda efter
följande kriterier: över 18 år med en diagnostiserad huvud- halscancer, och
villiga att delge sina upplevelser av att leva med denna cancer. Deltagarna var
21 män mellan 38 och 83 år (median 60, 5 år) och 14 kvinnor mellan 59 och 81
år (median 67, 4 år). Majoriteten av deltagarna var svenskar; 26 stycken (15
män/11 kvinnor). Nio av deltagare var utlandsfödda och från sju olika länder. Då
inte alla deltagarna hade svenska som modersmål genomfördes några intervjuer
delvis på engelska. Detta var inte någons modersmål, men det var ett välkänt
språk för både forskare och deltagare.
Flertalet av de 35 deltagarna hade talsvårigheter och ibland behövdes utökad
intervjutid för upprepning av enstaka ord eller meningar. Trots dessa
talsvårigheter gav personerna uttömmande och känslosamma svar. Om
deltagarna önskade att deras närstående skulle närvara för att stödja dem under
intervjun godkändes detta. Övervägande antalet av deltagarna hade stora
tumörer som gav problem, symtom och förändringar som var speciellt
obehagliga som exempelvis att:
• 33 deltagare upplevde svårigheter att äta och svälja
• 31 deltagare hade synlig cancersvulst eller huddefekt efter
operation/strålbehandling av ansikte eller nacke/hals.
• 20 deltagare hade besvärande heshet
• 18 deltagare hade ökad slembildning eller ingen saliv och extrem
muntorrhet
• 16 deltagare hade artikulationssvårigheter
• 5 deltagare talade med matstrupsröst på grund av bortopererade stämband
• 4 deltagare hade extrem nasal röst
55
De kvalitativa individuella intervjuerna var halvstrukturerade med öppna frågor.
Deltagarna intervjuades vid ett (delarbete I, II, III) eller flera tillfällen
(delarbete IV) och sammanlagt gjordes 53 intervjuer. Intervjuplatsen valdes av
deltagarna och genomfördes i hemmet (n= 30), på sjukhus (n=21), eller på
deltagarnas arbetsplatser (n=2). Samtliga intervjuer spelades in på ljudband och
varade 30-120 min. Intervjuerna skrevs ut ordagrant av intervjuaren (författaren
av denna avhandling) i nära anslutning till genomförandet av intervjun för att
intervjusituationen skulle ihågkommas. Utskrifterna bestod av 1083 sidor med
1,5 radavstånd.
Resultat
• Personer med huvud - halscancer vardagsliv tolkades som ett liv i
fångenskap och de upplevde sitt liv som en ständig resa i berg och
dalbana; en känslomässig pendling mellan hopp och förtvivlan. De ofta
livshotande symtomen upplevdes som ett hot mot existens och identitet,
men de uppvisade trots detta ofta en stark optimism och framtidstro.
• Personernas inre styrka, goda relationer och känslomässiga stöd dygnet
runt ifrån närstående var betydelsefullt och hjälpte dem att få kontroll och
makt i vardagen.
• Aktiviteter såsom nära kontakt med natur, djur, och hobbyer skapade
möjlighet för dem att hantera sitt förändrade vardagsliv och gav dem
upplevelser av hälsa och välbefinnande.
• Medlemskap i patientförening var värdefullt, likaså medverka i kurser
som t.ex. att lära sig leva med cancer.
• Egenvård ökade patienternas självbestämmande och minskade deras
beroende av hjälp ifrån andra.
• Kvinnor med huvud- halscancer upplevde en speciell utsatthet och
upplevelser av förändrade känslomässiga och sexuella relationer. Resultat
visade även deltagarnas oro för sina närståendes pressade livssituationer.
• Kontakten med vården innebar för vissa personer upplevelser av
maktlöshet och sårbarhet. Ett gott bemötande och goda arbetsrelationer
kunde avhjälpa dessa personers upplevelser av ojämlik ställning i vården.
• Ett gott bemötande kännetecknades av en patients upplevelse av att känna
samverkan och jämlikhet i en dialog med kompetent vårdpersonal. Detta
hjälpte dem att få ökad egenmakt och kontroll i vardagslivet.
• Före och efter behandlingstiden var perioder där samtliga personer kände
sig någon gång övergivna av vården.
56
• Vårdpersonalens bemötande kunde endera förstärka eller förminska
personernas upplevelser av hälsa och välbefinnande.
• Bemötande och tillgängligheten var ej optimal och speciellt tydligt var
detta vid personernas första kontakt med vården. Personerna upplevde
ofta att de inte blev trodda eller respekterade då de beskrev sina problem.
Bristen på respekt kan tyda på avsaknad av en patientcentrerad vårdorganisation med psykosocial rehabilitering.
Kliniska implikationer för hälsofrämjande
För att främja hälsan behöver personer med huvud- halscancer tillgänglighet och
kontinuitet till vårdpersonal med rätt kompetens. Därför behöver personerna
stöd och samordning mellan behandlingsfaserna under sin långa sjukdomsresa
utifrån en patientcentrerad vårdorganisation. Sjuksköterskemottagningar
kopplade till öronklinikerna kan rekommenderas då dessa kan ha möjlighet att
erbjuda psykosocial rehabilitering med trygghet och säkerhet för patienterna och
deras närstående.
För att främja hälsan behöver personer med huvud- halscancer aktiviteter såsom
nära kontakt med natur, djur och hobbyer. Därför behöver mer uppmärksamhet
och handlingskraft läggas på skapande av hälsosam och stödjande vårdmiljö
som inkluderar lättillgänglighet och planering av avskilda, tysta, avstressade
rum med utsikt mot parker eller gröna ytor för både patienter och närstående.
Även mer kultur i vården behövs som innefattar konst, musik och tillgång till
bibliotek och kaféer.
För att främja hälsan behöver personer med huvud- halscancer fokus på inre
styrka, hälsoresurser och krafter. Kanske kan därför ett salutogent synsätt i
hälso- och sjukvården underlätta för patienterna att välja diskussionsämne och
leda till att personerna når uppsatta livsmål, makt och kontroll över sjukdomen.
Kanske krävs mer utbildning för vårdpersonal i att arbeta med ett ”botten upp” perspektiv där patienternas aktivitet, deltagande och samarbete förstärks, detta
kan speciellt tänkas förbättra resultatet vid ex. rökning och alkoholstopp.
För att främja hälsan behöver personer med huvud- halscancer mer respekt och
stöd för sina värderingar och önskningar om alternativa och komplementära
behandlingar tillsammans med den fastställda medicinska behandlingen.
Möjligtvis behövs ytterligare utveckling och utbildning för vårdpersonal om
kommunikation samt alternativa och komplementära behandlingar.
57
För att främja hälsan behöver personer med huvud- halscancer goda relationer
och känslomässigt stöd dygnet runt för att få kontroll och makt i vardagen.
Därför behöver de mest sårbara och ensamma patienterna som upplever svår
känslomässig och existentiell fångenskap individualiserad vård och utökat
hälsofrämjande stöd. Uppmuntran och stöd till patientorganisationer kan vara
värdefullt då de kan framföra denna grupps åsikter, och kanske behövs också ett
utökat samarbete mellan patientorganisationer, vårdpersonal och politiker för att
förbättra ekonomisk och social trygghet samt sjukvårdstrygghet för denna
patientgrupp.
Förslag på framtida forskning
•
•
•
•
Mer salutogen forskning, speciellt för de personer med huvud- halscancer
som är mest sårbara och befinner sig i beroendeställning, samt ur
närståendes och vårdpersonals perspektiv.
Genusforskning riktad mot kvinnors situation då de har huvudhalscancer.
Arbetslivsforskning med fokus på anpassningsförmåga och hälsosam
miljö, eftersom personer med huvud- halscancer har långtidspåverkan av
fysiska och psykosociala men relaterade till förändrat utseende och
sväljnings- och kommunikationsproblem.
Önskvärd är ökad användning av både kvalitativ och kvantitativ forskning
i praktisk verksamhet, som till exempel användande av livskvalitéinstrument vid svåra behandlingsbeslut där även patientens åsikter kan
värderas.
58
Acknowledgements
Many people who have supported and encouraged me in different ways over the
years have made this thesis possible. First, I would like to express my sincere
gratitude to all of the participants and their next of kin who so kindly and
wholeheartedly shared their experiences of living every day with head and neck
cancer. Their thoughts and feelings gave me insight into what it is like for a
person and his/her next of kin to live 24 hours a day with this illness. I have felt
privileged and honoured to share in your experiences.
To my three supervisors – Anneli Sarvimäki (Gothenburg and Finland), Agneta
Berg (Kristianstad), and Bengt Fridlund (Halmstad) – thank you for sharing your
deep knowledge, wisdom, and understanding of the sometimes intricate
academic world. Your experience, analytic capacity, and constructive criticism
have helped me move forward. Thank you for believing in me and for all your
support during the years. I value your friendship and generosity.
I would also like to express my gratitude to everyone else, named and unnamed, who played a part in this work. For helping me through my first
stumbling years in the scientific world, thanks to: Ulla-Beth Nilsson, Marie
Edwinsson-Månsson, Anders Sjöblom, Inger Olsheden, Karen Odberg
Pettersson, Evy Lidell, and Barbro Arvidsson. Also, thanks to all my friends at
Helsingborg Hospital, in particular: Knut Flisberg, Kerstin Jansson, Jan Dolata,
Anders and Eva Wihlborg, Merita Bengtsson, Bo Paulsson, Vivi Nilsson, Bo
Alkestrand, Monica Rödseth, Lena Hansson, Lena Laurin, Karin Svensson,
Peter Olsson, Inga-Lisa Sjölin, Gun Cohn, Eva Nilsson, and Christina Gedda.
Thank you to my colleagues and friends in the Nordic countries that helped me
recruit persons for the studies: In Sweden; Christina Landegren, Birgitta
Andersson, Ann Ståhl, and Anna-Lena Bengtsson. In Norway; Ingegjerd Seim
Eggesbø. In Denmark; Julie Bøgelund. In Finland; Pirkko Kokkonen, and on
Iceland; Thorunn Lárusdóttir and Hannes Petersen.
To all my friends, colleagues, principals, and staff at the Department of Health
Sciences, Kristianstad University, thank you for your encouragement throughout
the entire process. Special thanks to: Maria Einarsson, Gunvor Johansson, AnnMarie Nilsson, Gunilla Widerfors, Britta-Lena Engström, Lillemor Jannesson,
Kristina Bergström, Berit Andersson, Pia Andersson, Kristina Rundblad, AnnMarie Bjurbrant-Birgersson, Liselotte Jakobsson, Susanne Nilsson, Elisabeth
Ekberg, Gunilla Andersson, Catharina Edvardsson, Zada Pajalic, Pia Petersson,
59
Monica Granskär, Jenny Aronsen, Anneli Wigforss-Percy, Cecilia Gardsten,
Dan Axelsson, Bo Wittsell, Dan Wirdefalk, Sofia Johansson, Pirjo Raudasoja,
Lena Wierup, Lena Helander, Arne Halling, and Kerstin Blomqvist.
Special thanks to Eva Clausson, Inga-Britt Lind, Kerstin Samarasinghe, AnnChristin Janlöv, Vanja Berggren, Lisbeth Lindell, and KarinAnna Petersen for
continuous and invaluable discussions in seminar groups. Without your fullhearted criticism and constructive comments during the seminars there would
have been no thesis.
My warm thanks to the staff and wonderful fellow students from around the
globe that I have been so privileged to meet at the Nordic School of Public
Health in Gothenburg. Special thanks to: Anders Möller, Eva Johansson,
Margaretha Strandmark, Tanja Johansson, Helga Sól Ólafsdottir, Kristina Båth,
Kirsi Gomes, Clas Patriksson, Anette Johansson, Inger Skoglund, Rose WesleyLindahl, Martha Højgaard Pedersen, Birgit Schelde Holde, Lene Povlsen, Boel
Hovde, Maj Halth, Ivika Oja, Ingrid Landgraff Østlie, Buu Tran Ngoc, Lena
Luthor-Hammarlund, Anna Sofia Veyhe, Rita Jakubcionyte and Isabel FrancoLie.
For excellent revision of the English manuscript, thanks to Ron Gustafson,
Gullvi Nilsson, Monique Federsel, Segaran Pillay, and Fredrik Clausson.
Special thanks to all of the librarians who helped me during the years, and
special thanks to Anders Johansson and Annette Ljungberg (at hospital
Helsingborg), Lena Edvardsson (and team Påarp) and Anders Håkansson
(Kristianstad University College).
Special hugs to Anders (in memoriam) and Narcissa Tellefsen and their lovely
little daughter Aila, for priceless discussions and support.
In addition thanks to my good friends Marianne and Kenneth Carlsson and
Ingrid and Åke Alkebro.
Thanks to my parents, Margith and Henning Ask (in memoriam) who always
encouraged me to study. Thanks to my sister-in-law Inger Olsson for always
walking “Tunby rundan” every Tuesday morning at 7.30. Thanks to my
childhood friends Siv Radomski and Rose-Marie Frennesson for deep everyday
life discussions and coffee evening meetings. Thanks to my childhood friend
Lena Palm for E-mail support. And for many enjoyable Mondays and
60
Wednesdays, thanks to my friends in the Haga water gymnastic group,
especially our leader Margot Larsson.
Last, but not least, a big hug to my family: to Göran my partner in life for four
decades, for always being there and encouraging and supporting me in my
everyday life; and to my son Anders and his Lotta, and my daughter Eva and her
Jens (my computer consultant), who always supported and believed in me.
During the thesis our dear grandchildren Ella and Petter (in memoriam) were
born, and you continuously remind me of what is most important in my life!
This thesis was supported by the Kristianstad University College, the Nordic
School of Public Health, the Swedish Nurses Association (SSF), and the Arvid
Ohlsson Foundation at Helsingborg Hospital.
61
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74
Appendix 1
Helsingborg 970911
Bästa…………………………………………………….
Mitt namn är Margereth Björklund och jag arbetar som sjuksköterska på öron avd 16 lasarettet i Helsingborg.
Jag går en forskningsförberedande påbyggnadsutbildning för sjuksköterskor. Inom ramen för denna utbildning
ska en undersökning utföras.
Syftet med min undersökning är att göra en kartläggning av betydelsefulla händelser som patienter beskriver
för mig. Händelser som de upplevt under sin sjukdomstid då det gäller att bevara hälsa trots sjukdom. Med det
menar jag frågor om händelser som gjort att Du uppnått bättre livskvalitet och fått en aktivare egenvård. Det
gäller frågor om händelser vid informations- och undervisningstillfällen som att ex. äta rätt, motionera eller
avhålla sig från rökning, alkohol eller droger. För att få denna kunskap behöver jag ställa dessa frågor bl.a. till
Dig som patient.
Resultatet kan ge oss vårdpersonal en ökad kunskap om patienternas erfarenheter, vilket kan leda till att vi
praktiskt kan förbättra vården. Undersökningen är bedömd och godkänd av forskningsetikkomittén vid Lunds
Universitet.
Med detta brev vill jag informera om undersökningen och samtidigt fråga om Du kan tänkas medverka. Din
medverkan är helt frivillig och Ditt ställningstagande påverkar inte Din fortsatta kontakt med sjukvården. Du har
rätt att avbryta intervjun om Du ej önskar fullfölja den.
Jag har tystnadsplikt, och Din medverkan och Dina svar kommer att behandlas konfidentiellt. Vänligen fyll i
svarstalongen oavsett medverkan och vilket telefonnummer jag kan få ringa upp Dig på om Du vill medverka.
Var snäll att returnera talongen i bifogat kuvert inom 1 vecka. Om Du väljer att medverka kan jag komma hem
till Dig eller till annan plats Du väljer för intervju. Intervjun brukar ta ca 1 timme.
Tack på förhand
Margereth Björklund
Om Du har några frågor hör gärna av Dig per telefon 042/19 18 40 (arb.)
eller 042/22 87 68 (hem)
------------------------------------------------------------------------------------------------------------------------
Medverka
†
ej medverka
†
Namn________________________________Kontakta mig per telefon_________________
Appendix 2
Förfrågan om medverkan i intervju för personer med
Huvud och halscancer
Du tillfrågas härmed om att deltaga i en studie för att beskriva Dina upplevelser av hälsa och omvårdnad då Du
drabbats av huvud och halscancer. Studien kan ge ökade kunskaper om hur det är att drabbas av och leva med
denna cancer och också om upplevelser av och önskningar om omvårdnad. Din erfarenhet är mycket värdefull
och Din medverkan kan ge viktig information som kan leda till ett förbättrat omhändertagande för denna
patientgrupp i framtiden.
Intervjun beräknas ta 1 timma och kommer att spelas in på ljudband för att sedan ordagrant skrivas ut. Inga
personuppgifter antecknas på bandet eller utskriften utan dessa märkes med en siffra och adresslistor upprättas
separat. Bandet, utskrifterna och adresslistorna försvaras inlåst på Högskolan i Kristianstad och endast
forskargruppen har tillgång till materialet. Resultatet presenteras så att Din identitet inte avslöjas. Studien bygger
på frivillig medverkan, enligt bifogat formulär, och Du kan när som helst avbryta Ditt deltagande utan att ange
särskilda skäl därtill och Ditt avbrott påverkar inte Din vård eller behandling. Vänligen underteckna och skicka
det informerade samtycket direkt till undertecknad i det medföljande frankerade svarsbrevet. Jag återkommer
sedan via telefon för att bestämma tid och plats för intervju. Du är välkommen att när som helst under studiens
gång ta kontakt med undertecknad.
Med vänlig hälsning
_______________________
Margereth Björklund
Leg sjuksköterska/Doktorand vid Nordiska högskolan för folkhälsovetenskap, Göteborg. Universitetsadjunkt Institutionen för
Hälsovetenskaper, Högskolan Kristianstad Tfn 044-20 40 94, 042-22 87 68, mobil 070-276 33 18
E- post [email protected] Vetenskapliga handledare: Anneli Sarvimäki, Adj. prof., Leg Sjuksköt, Fil Dr. Agneta Berg
Universitetslektor, Leg Sjuksköt Dr Med vet.
Informerat samtycke
Projektets titel: Personer med huvud och halscancer beskriver sina upplevelser av hälsa och omvårdnad.
Jag är införstådd med att deltaga i denna studie där personer med huvud och halscancer beskriver sina
upplevelser av hälsa och omvårdnad. Jag är införstådd med att mina svar kommer att vara underlag för studien.
Jag är införstådd med att intervjuerna spelas in på ljudband och skrivs ut.
Jag är införstådd med att mitt deltagande är frivilligt och att jag kan avbryta mitt deltagande när som helst utan
förklaring, utan att det påverkar vidare omhändertagande i vården.
Jag är införstådd med att jag kan ställa frågor om studien när som helst, nu eller i framtiden.
Jag är införstådd med att mina svar förblir konfidentiella och att presentationen av resultatet inte avslöjar min
identitet.
Härmed samtycker jag till att deltaga i denna studie.
____________________________________
Ort
datum
_______________________
_________________________________
Namnunderskrift
Namnförtydligande
Tfn. Bostad________________ Tfn Arbete _______________Mobil Tfn._____________________
E-post_____________________________________
Vänligen underteckna och skicka detta svar direkt till forskaren i det frankerade svarsbrev.
Därefter kontaktar forskaren Dig via telefon. Intervjupersonen får en kopia av denna signerade och daterade
samtyckes informationen vid intervjun. Originalet förvaras konfidentiellt.
1
1
För vidare information kontakta
Universitetsadjunkt Margereth Björklund (Doktorand på Nordiska högskolan för folkhälsovetenskap Göteborg) Högskolan Kristianstad Tfn
044-20 40 94, 042-22 87 68, Mobil: 070-276 33 18. e-post [email protected]
Adj. prof., Leg Sjuksköt, Fil Dr. Agneta Berg Universitetslektor, Leg Sjuksköt Dr Med vet.
Vetenskapliga handledare: Anneli Sarvimäki,
I
Errata article I
Error
Correction
All over the article …health promotive care
… health promoting care
Page 205, column 2, line 16
Health promotion is not...
Page 207, on top
nurse on a once –only…
Health is not …
nurse (MB) on a once –only …
All over the article
…the most satisfactory incidents
All over the article
…the unsatisfactory incidents
the least frequently mention incidents
Table 4 page 208 category The nurse supported
The nurse was supportive
the most frequently mention incidents
Paper 166 DISC
Head and neck cancer ± nursing implications
Cancer patients' experiences of nurses' behaviour and
health promotion activities: a critical incident analysis
È RKLUND, RN, MNSC, STUDENT, Centre for Health Promotion Research, Halmstad University, Halmstad and
M. BJO
The Ear Clinic, NordvaÈstra SkaÊnes SjukvaÊrdsdistrikt, Sweden & B. FRIDLUND, RN, PHD, Centre for Health
Promotion Research, Halmstad University, Halmstad, Sweden
È RKLUND M. & FRIDLUND B. (1999) European Journal of Cancer Care 8, 204±212
BJO
Cancer patients' experience of nurses' behaviour and health promotion activities: a critical incident
analysis
Ahed
Bhed
Ched
Dhed
Ref marker
Fig marker
Tab marker
Ref end
Ref start
Patients with head and neck cancer report several disease- and health-related problems before, during and
a long time after completed treatment. Nurses have an important role in educating/supporting these
patients about/through the disease and treatment so that they can attain well-being. This study describes
the cancer patients' experiences of nurses' behaviour in terms of critical incidents after nurses had given
them care to promote health. The study had a qualitative, descriptive design and the method used was the
critical incident technique. Twenty-one informants from the Nordic countries diagnosed with head and
neck cancer were strategically selected. It was explained to the informants what a critical incident
implies before the interviews took place; this was defined as a major event of great importance, an
incident, which the informants still remember, due to its great importance for the outcome of their
health and well-being. The nurses' behaviour was examined, and critical incidents were involved in 208
cases±150 positive and 58 negative ones±the number of incidents varying between three and 20 per
informant. The nurses' health promotion activities or lack of such activities based on the patients'
disease, treatment and symptoms, consisted of informing and instructing the patients as well as enabling
their participation. Personal consideration and the nurses' cognisance, knowledge, competence,
solicitude, demeanour and statements of understanding were found to be important. Continuous
health promotion nursing interventions were of considerable value for the majority of this group of cancer
patients. Oncology nurses could reconfirm and update the care of head and neck cancer patients by
including health promotion activities in individual care plans. By more frequent use of health promotion
models, such as the empowerment model, the nurses could identify and focus on those individuals who
needed to alter their life-style as well as tailor their approach towards these patient by setting goals for
well-being and a healthy life-style.
Keywords: critical incident technique, head and neck cancer, health promotion, nursing.
INTRODUCTION
In the Nordic countries & 2300 individuals in all receive
treatment for head and neck cancer annually (Parkin et al.
Correspondence address: Margereth BjoÈrklund, LokvaÈgen 49, S-260 33
PaÈarp, Sweden (e-mail: [email protected]).
European Journal of Cancer Care, 1999, 8, 204±212
# 1999 Blackwell Science Ltd
1992). These cancer patients report several disease- and
health-related problems before, during and a long time
after completed treatment. They are a highly vulnerable
group, and their problems include malnutrition, speech
and pain problems, reduced activity in comparison with
their pre-disease state, depression, decreased social functioning, poor general health, and reduced quality of life
(Woodtli & Van Ort 1991; Langius et al. 1993; Bjordal &
European Journal of Cancer Care
Kaasa 1995). In the future, many hospitals will be closed
down and cancer patients more frequently treated in
ambulatory clinics (Frank-Stromborg et al. 1990). In that
environment the nurses' role in encouraging and empowering the individual to attain well-being and to adopt a
healthier life-style will be even more important. Nurses'
health promotion activities before, during and after
treatment are of great value in order to enable cancer
patients to increase their control over, and to improve,
their health in order to reach well-being.
DEFINITION AND LITERATURE REVIEW
The philosophy underlying health promotion is the World
Health Organization's (WHO) conceptualization of primary health care, which is an expansion of WHO's
definition of health given in the WHO Ottawa Charter
for Health Promotion:
Health promotion is the process of enabling people to
increase control over, and to improve, their health. To
reach a state of complete physical, mental and social
well-being, an individual or group must be able to
identify and to realise aspirations, to satisfy needs,
and to change or cope with the environment. Health
is therefore seen as a resource for everyday life, not
the objective of living. Health is a positive concept
emphasising social and personal resources, as well as
physical capacities. Therefore, health promotion is
not just the responsibility of the health sector, but
goes beyond healthy life-styles to well-being. (WHO
1986: 1)
Nordenfeldt (1991: 34) defines health promotion as
`improving and supporting those states of the body and
mind of human beings which enable them to realise their
vital goals'. Health promotion becomes a way of helping
people to attain the important goals in their lives and is
thus a means of achieving quality of life. Segar et al. (1998)
approve of and encourage the incorporation of mild to
moderate exercise into care plans for people with cancer
since it can relieve depression and anxiety symptoms.
Taylor & Roberts (1997) suggest that future strategies for
reducing skin cancer be based in primary care by nurses.
Varricchio (1997) and Muir et al. (1997) state that nurses
are in an important position to engage in health promotion, cancer prevention and early detection of cancer.
Nurses might use many of the suggestions by Muir et al.
(1997) when planning health promotion programmes for
older adults. Dodd & Dibble (1993) used the health
promoting Lifestyle Profile (Walker et al. 1986) when they
developed cancer patients' self-care. Pender (1987) sug-
gests that health-protecting and health-promoting behaviour should be viewed as complementary components of
a healthy life-style and proposes the Health Promotion
Model, a paradigm for explaining promotive health
behaviour. When testing the Health Promotion Model in
practice in ambulatory cancer clinics, Frank-Stromborg et
al. (1990) found factors which may be suitable targets for
intervention to encourage the adoption of healthy lifestyles. Webb (1994) claims that health promotion consists
of legal, fiscal and environmental issues, which are
concerned with the achievement of health and the
prevention of ill health. Many hospitals have joined the
WHO/Euro network for Health Promoting Hospitals,
working for Health for All by the year 2000 and beyond
in the WHO Ottawa Charter for Health Promotion (WHO
1986). Health promotion is not merely the absence of
disease or ill health; it is based on a concept of positive
health and hope (Naidoo & Wills 1998). By more frequent
use of health promotion models, such as the empowerment model put forward by Naidoo & Wills (1998), nurses
could encourage cancer patients to take responsibility for
their life, to strive to achieve better well-being, and to alter
their life-style to a more healthy one. It has become
routine for cancer treatment to be performed on an
outpatient basis, thus allowing the patient to continue to
live in the community and maintain their lifestyle (FrankStromborg 1989). The increased survival rate, the improvements in cancer treatments and the way in which
cancer treatment is delivered have created a need among
cancer patients for health promotion in order to attain
well-being.
AIM
The aim of this study was to describe cancer patients' experiences of nurses' behaviour in terms of critical incidents
after nurses had given them health promotive care.
METHODS
Design and method
The study had a qualitative, descriptive design, and the
activity investigated was the behaviour of nurses when
giving the cancer patient health promotive care, focusing
on the well-being of the individual. The method used was
the critical incident technique (CIT), described by Flanagan in 1954. The aim of the CIT is the collection of
information about the behaviour of people in certain
significant and decisive situations, in which the most
upsetting experiences are especially noted. The CIT is a
# 1999 Blackwell Science Ltd, European Journal of Cancer Care, 8, 204±212
205
È RKLUND & FRIDLUND
BJO
Cancer patients' experiences of nurses' behaviour
systematic inductive method, which gives concrete
descriptions of incidents of importance for the activity
under investigation (Polit & Hungler 1995). Both satisfactory and unsatisfactory aspects of care are elicited. The
analysis of 100 incidents is deemed sufficient for a wellbalanced study (Flanagan 1954). The CIT has been
employed in research concerning working conditions by
Andersson & Nilsson (1966) and in care research by
Benner (1984) and Rooke (1990). Flanagan's (1954) requirements for the CIT are that the activities to be investigated
should have a well-defined purpose and that the researcher
must possess knowledge and previous information about
the situations to be examined.
Informants
Twenty-one informants from the Nordic countries, diagnosed with head and neck cancer (Table 1) were
strategically chosen to ensure maximal variation in
socio-demographic data and head and neck cancer experiences (Fridlund 1998), i.e. sex, age, marital status, time
since diagnosis, occupation or pension, days in hospital,
and treatment were chosen as theoretically important
variables. The Nordic countries involved were Denmark,
Table 1. Head and neck cancer diagnosis of the informants (n = 21)
Diagnosis
Laryngeal cancer
Mouth cancer
Nasopharyngeal cancer
Nasal and sinus cancer
Oropharyngeal cancer
Unspecified pharyngeal cancer
Salivary gland cancer
Tongue cancer
No. of informants
6
3
1
2
4
2
1
2
Finland, Iceland, Norway and Sweden. Three of the
informants had lymphatic gland metastases, and six had
a recurrence in the area around the first tumour. The
informants had been hospitalised between 1 day and
several weeks, and 19 of them had been treated with both
surgery and radiotherapy; one had had surgery only and
one radiotherapy only. There were 13 men between 38 and
75 years of age and eight women between 61 and 81 years
of age. Three of the informants received early retirement
pension, four sickness pension and seven retirement
pension. Fifteen were married, one was single, two were
divorced and three were widowed. Six of them were still
working and one was studying. Occupational groups
amongst them were seven workers, nine salaried employees and five self-employed.
Data collection
Data was collected trough semi-structured interviews.
The time between diagnosis and interview varied from 4
months to 14 years. Topics for the questions were derived
from the aim of the study, and further questions were
added during the interviews, as shown in Table 2. The
informants were presented with a written inquiry, in their
own language, as to whether they were willing to
participate and be interviewed. A numbered list of
participants was kept separate from other material, and
the interviewees could not be identified from the tape or
the transcripts of the interviews. The participants gave
their written consent and were guaranteed confidentiality.
The study was approved by the Committee for Ethics in
Medical Investigations, Lund University, Sweden. The
chief physicians were asked and informed about the study
and agreed to it being carried out. All interviews were
conducted in a place chosen by the informant, by the same
Table 2. Interview questions
1. Please describe a critical incident during your illness, when a nurse talked about smoking or the use of alcohol or drugs, in a way which
influenced you, in a positive or negative way, to maintain or promote health in terms of smoking, alcohol or drugs.
a. Try to recapitulate the event and reproduce it as accurately as possible.
b. Why was this event so significant?
c. What made that event critical for you?
d. What did you think about when the event occurred?
e. Please describe your thoughts when it happened.
f. What did you feel before, during and after the event occurred?
g. Please describe your feelings during and after the situation occurred, positive or negative feelings. What was most demanding when the
event occurred?
2. Describe a critical incident positive or negative . . . .about nutrition and so on.
3. Describe a critical incident positive or negative . . . .about physical activity and fitness.
4. Describe a critical incident positive or negative . . . .about improving mental health and coping with stress and so on.
5. Describe a critical incident positive or negative . . . .about health information and so on.
6. Describe a critical incident positive or negative . . . .about health education and so on.
7. Describe a critical incident positive or negative . . . .about self-care and so on.
8. Describe a critical incident positive or negative . . . .about quality of life and so on.
206
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European Journal of Cancer Care
nurse on a once-only basis, and lasted 30±90 min. The
interviews were taped, with the interviewees' permission.
The informants were informed about the CIT before the
interviews took place, and a critical incident was defined
as a major event of great importance to the cancer patient.
An incident that the person still remembers because it was
of great importance for the outcome of their health and
well-being, as shown in Table 2. The data collection period
was between October 1997 and September 1998.
Data analysis
The whole text was transcribed verbatim by the nurse
researcher, and each interview was read several times in
order to become familiar with the data. When all the
interviews had been analysed, 208 critical incidents were
identified. The number of incidents varied between three
and 20 per informant. The incidents were classified into
groups; in the last nine interviews no new subcategories
emerged. The groups of incidents were reformulated into
different kinds of behaviour, which resulted in 25
subcategories. These were in turn allocated to six
categories and two main areas. The main areas described
the overall structure of the material. Some of the incidents
fitted into more than one of the subcategories, and the
content which was in best accord with what the incident
expressed was chosen. The incidents were identified by
two independent investigators; the nurse researcher with
experience in the care of head and neck cancer patients
and her supervisor with experience in methodology and
care in general. The reliability of the analysis was tested
by the supervisor by placing incidents into existing
subcategories, categories and main areas. The level of
agreement was expressed in percentage (Polit & Hungler
1995), as shown in Table 3.
Table 3. Level of agreement in percentage between the investigator
and the coexaminer
Agreement level
Sub-category
Category
Main area
91
93
95
made participation possible and with her knowledge
helped, or did not help, the patient to better well-being.
The second main area ± solicitude ± described the cancer
patient's experiences of the nurses' behaviour and health
promotion activities, or lack of such activities, when the
patient felt anxious concerning the disease, treatment or
symptoms. The nurse showed, or did not show, personal
consideration as well as supported and strengthened, or
did not support and strengthen, the patients' social and
mental well-being. Table 4 provides an overview of the
subcategories, categories and main areas.
The nurse supervised
This category described the cancer patient's experiences of
nurses' behaviour and health promotion activities, or lack
of such activities, based on the patients' disease, treatment
and symptoms. The nurse cared for the patients' personal
hygiene: `The nurse helped me to get washed and cared for
me'. The nurse checked up on the patients' nutritional
status: `The nurse just wrote down the weight on the paper
but she did not do anything about it'. The nurse observed
the patient: `The nurse watched me from the computer
screen'. The nurse checked the patient: `The nurse
checked on me every 20 minutes'.
The nurse demonstrated knowledge of her profession
This category presented examples of the cancer patient's
experiences of nurses' behaviour and health promotion
activities, which she included, or did not include, in the
individual care plans and timetables. The nurse cared
about nursing issues: `The nurse set up a timetable for all of
us, we had to go for a walk every day' or `the nurse did not
mention anything about exercise and I did not bother to
move because I was in pain'. The nurse cared about
technical issues: `The nurse put the needle in me and gave
me medicine and after that all was done'. The nurse knew
her own limitation: `The nurse sent for a doctor when my
mouth was swollen'. The nurse cared about medical issues:
`The nurse gave me tablets and then the pain disappeared'.
RESULTS
The nurse brought enlightenment
In the analysis of the incidents, two main areas emerged,
when the nurse showed cognisance and solicitude towards
the patient. The first main area ± cognisance ± described
the cancer patient's experiences of the nurses' behaviour
and health promotion activities, or lack of such activities,
when the patient felt anxious concerning the disease,
treatment or symptoms. The nurse supervised, informed,
This category described the cancer patient's experiences of
nurses' behaviour and health promotion activities, or lack
of such activities, when informing and instructing them,
or not informing and instructing them. The nurse
informed her patients about the treatment: `The nurse
told me about the dose and the radiation treatment' or `the
nurses gave me a lot of soda water but they didn't tell me
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Cancer patients' experiences of nurses' behaviour
Table 4. A summary of main areas, categories and subcategories. The number in brackets after each subcategory is the number of critical
incidents
Main area
Cognisance
Category
Subcategory
The nurse supervised
The nurse demonstrated knowledge of
her profession
The nurse brought enlightenment
The nurse made participation possible
Solicitude
The nurse showed personal consideration
The nurse supported
why this was good for my mouth'. The nurse informed her
patients about smoking: `The nurse did not mention
anything about smoking'. The nurse informed her patients
about social issues: `The nurse told me about cancer
groups'. The nurse informed her patients about nutrition:
`The nurse told me about nutritional supplements, but I
didn't like to drink them'. The nurse informed her patients
about side-effects: `The nurse thought that someone else
had told you'. The nurse instructed her patients about
medical issues: `The nurse said: take the medicine
together, it took me 2 days to understand'.
The nurse made participation possible
This category described the cancer patient's experiences of
nurses' behaviour and health promotion activities, or lack of
such activities, when contributing or not contributing to
self-care, preserved independence and autonomy. The nurse
allowed the patient to co-operate: `The nurse showed me
how to do it and said; ``we will tackle this successfully
together''. The nurse permitted the patient to take responsibility for his or her health: `The nurse said; ``you must
learn to cope and trust yourself and you must go out to
work''. The nurse helped the patient to make his or her own
decision: `The nurse said: you will go and have an ECG, go to
the left and then to the right, you can do it yourself'.
208
The nurse checked up on the patients' nutritional status (nine)
The nurse care for the patients' personal hygiene (seven)
The nurse observed the patient (seven)
The nurse inspected the patient (five)
The nurse cared about nursing issues (21)
The nurse cared about technical issues (11)
The nurse knew her own limitations (nine)
The nurse cared about medical issues (four)
The nurse informed her patients about social issues (seven)
The nurse informed her patients about nutrition (seven)
The nurse informed her patients about smoking (six)
The nurse informed her patients about treatment (seven)
The nurse informed her patients about side-effects (four)
The nurse instructed her patients about medical issues (four)
The nurse allowed the patient to co-operate (10)
The nurse permitted the patient to take responsibility for his/her
health (nine)
The nurse helped the patient to make his/her own decisions (six)
The nurse was obliging (20)
The nurse was encouraging (12)
The nurse gave physical assistance (nine)
The nurse was respectful (nine)
The nurse showed empathy (three)
The nurse was thoughtful (nine)
The nurse consoled (seven)
The nurse answered the call-bell (six)
The nurse showed personal consideration
This category described the cancer patient's experiences of
nurses' behaviour and health promotion activities, or lack
of such activities, in order to strengthen the individual's
mental health. The nurse was obliging: `The nurse was
never troublesome, you could ask for anything'. The nurse
was encouraging: `The nurse sent me a postcard and it
helps when someone is thinking of you'. The nurse
showed empathy: `The nurse was so calm and collected
and sympathetic', or ``the nurse was too good-natured, she
felt so sorry for me, I didn't like it''. The nurse gave
physical assistance: `The nurse was holding my hand'. The
nurse was respectful: `The nurses respected me and I
respected them' or `the nurse scolded the patient when he
soiled his clothes while eating'.
The nurse supported
This category described the cancer patient's experiences of
nurses' behaviour and health promotion activities, or lack
of such activities, supporting the same attention to
everyone. The nurse was thoughtful: `The nurse was
kind-hearted, nice and not miserable' or `the nurse
answered me sharply and looked annoyed'. The nurse
consoled: `The nurse came into my room and was full of
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European Journal of Cancer Care
fun and I felt better inside' or `The nurse said: you'll never
make it'. The nurse answered the call-bell: `The nurse
came at once when I rang the call-bell'.
DISCUSSION
Methodological issues
The aim of the study was to describe cancer patients'
experiences of nurses' behaviour in terms of critical incidents
after nurses had given them health promotive care. A
qualitative design with semi-structured interviews was
chosen, motivated by Flanagan (1954). According to Flanagan,
the interview method is the most satisfactory data collection
procedure for the CIT. The CIT was considered both
appropriate, since the aim was to find incidents of importance
for the activity under investigation, and efficient with regard
to the collection of data pertaining to care actions (Polit &
Hungler 1995). The reliability in the study was built on the
informants' own experiences and choice of words. The
classification is the most controversial part of the CIT and
has been criticised for being both subjective and difficult. It is
clear that data can be categorised in more than one way, but it
is always possible to refer back to the critical incidents
(Andersson & Nilsson 1964). At the beginning of the analysis
the number of subcategories increased rapidly but in the last
nine interviews no new subcategories emerged. This indicates saturation, and the results are in agreement with
previous studies on the validity and reliability of the CIT.
Andersson & Nilsson (1964) state that the collection of data
has probably not ceased too early if 95% of the subcategories
have appeared after two-thirds of the incidents have been
classified. Lincoln & Guba (1985) suggest the use of four
criteria for making qualitative data analysis more trustworthy: credibility, transferability, dependability and confirmability. Two researchers were involved in the
identification and categorisation of the incidents, and the
study showed a high level of agreement, as shown in Table 3.
The ability to make generalisations and transferability are
issues concerning sampling size and design. It is impossible to
attain a large, statistically representative sample in a
qualitative analysis. In order to ensure great variation in the
sample, the informants were chosen strategically as well as
given the same information, in their own language. By putting
the incidents into existing subcategories, the supervisor
tested the dependability and confirmability of the analysis.
The nurse showed cognisance
This main area comprised two-thirds of the incidents and
showed the cancer patient's experiences of nurses'
behaviour and health promotion activities, which she
planned based on the patient's disease, treatment and
symptoms. The first category; the nurse supervised, had
four subcategories, and the most satisfactory incidents
were related to observing the patients and caring for the
patients' personal hygiene. The nurse helped the patient to
attain better well-being by improving the patient's control
over radiation treatment and skin side-effects. Cancer
patients who learnt about washing vulnerable skin with
soap and water experienced a higher level of well-being
(Campbell & Illingworth 1992). Malnutrition is a huge
problem for these patients. Most of the unsatisfactory
incidents were related to checking up on the nutritional
status of the patients. This suggests that oncology nurses
must actively work with health promotion activities
concerning nutrition. In line with Pender's (1987) ideas,
individual care plans and health promotion programmes
should be based on a health/wellness model rather than on
an illness/disease model. The approach should be tailored
to the individual. By more frequent use of health
promotion models, such as the empowerment model put
forward by Naidoo & Wills (1998), the nurses' could
encourage the cancer patients to take responsibility for
their own life. The individuals could, for example, have
responsibility for their own intake of calories and fluid.
With the help of appropriate information and knowledge,
they could strive to attain better well-being, and the
nurses could also encourage the individual to alter their
life-style to a more healthy one. Lees (1997) stresses the
necessity for dietetic intervention for every head and neck
cancer patient and that the nutrition treatment plan
should be decided before definitive management commences. The second category, the nurse demonstrates
knowledge of her profession, had four subcategories, and
the most satisfactory incidents were related to nursingand technical issues. Langius et al. (1993) state that
patients with oral and pharyngeal cancer need a long-term
individualised rehabilitation programme, and that the
nurse could use quality-of-life instruments in the assessment and evaluation of the nursing care of these patients.
Oncology nursing is changing, and the nurses' knowledge
must therefore be updated continuously. McMillan et al.
(1997) state that it is necessary to reconfirm and update
the blueprint for the oncology nursing certification
examination. Individual health care plans will be indispensable in the future and, according to Pender (1989),
development of the NANDA taxonomy is critical, as it
provides a new language for nurses to use in helping
patients move towards optimal health. The most unsatisfactory incidents were related to nursing issues, when
cancer patients showed reduced activity in comparison
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Cancer patients' experiences of nurses' behaviour
with their predisease state, due to pain. Consequently,
pain relief is of crucial importance. Courneya & Friedenreich (1997) underline the necessity for oncology nurses to
have an understanding of motivational factors related to
exercise during cancer treatment. The third category, the
nurse brought enlightenment, had six subcategories, and
the most satisfactory incidents were related to information about treatment. Gamble (1998) found that there were
problems regarding insufficient information provided
about the side-effects of a treatment and that giving and
receiving information can be problematic. Each patient
needs to receive individually adapted information. The
key to health promotion programmes is information and
communication, and therefore any negative attitudes on
the part of both patient and health promoter must be
identified and dealt with, before effective communication
can take place (Purandare 1997). The most unsatisfactory
incidents in the category were related to information
about smoking. By using health promotion models, the
nurses can influence patients towards a healthy life-style.
A problem is patients who carry on smoking despite a
cancer diagnosis. Dines (1994) states that health education
enables people to be more autonomous as well as
influences their individual health and illness behaviour.
Oncology nurses can more effectively help their patients
to stop smoking by assessing their smoking status and
willingness to give up smoking. The nurse can assess the
patients by offering them appropriate resources during the
continued follow-up (Hecht et al. 1994). The fourth
category, the nurse made participation possible, had three
subcategories, and the most satisfactory incidents were
related to co-operation. The individual has responsibility
for his or her own health, and nurses can make it possible
for the individual to improve, increase and take control
over their own well-being. It is very important that nurses
contribute self-care as well as empower cancer patients so
that they can preserve their independence and autonomy.
Grahn & Danielson (1996) claim that, if the individual
becomes familiar with facts and feelings, this reinforces
their confidence in developing appropriate coping strategies for living with cancer.
The nurse showed solicitude
This main area comprised one-third of the incidents and
showed the cancer patient's experiences of nurses' health
promotion activities in order to strengthen their social and
mental well-being. The first category, the nurse showed
personal consideration, had five subcategories, and the
most satisfactory incidents were related to the nurse being
obliging. The informants expressed the necessity of the
210
nurse working for genuine individual care and confidence
building. Good communication between the nurse and the
patient is a prerequisite for setting up goals regarding
smoking cessation, change of nutrition, and participation
in exercise or other health care activities (King 1990). Head
and neck cancer patients are a highly vulnerable group
with eating and speech difficulties. They also run a risk of
developing depression due to decreased social functioning.
Having cancer can lead to changes in psychological, social,
and spiritual well-being, and therefore follow-up care over
a long time is important (Hassey 1995). Rose et al. (1996)
consider that a nurse-managed telephone follow-up programme can be a component of a quality improvement
programme at radiation centres, enabling assessment of
patients' post-treatment symptoms as well as provision of
education and support. On the other hand, Munro et al.
(1994) found that a standard procedure of telephone calls is
not an effective method during radiotherapy and could
therefore not be recommended. Cook Gotay & Bottomley
(1998) argue that further development and evaluation of
programmes for providing psycho-social support by telephone is critically needed. They found that cancer patients
who may not otherwise receive psycho-social care due to
factors such as geographical distance, physical limitations,
or lack of comfort with face-to-face approaches, demonstrated significant reductions in psychological distress and
improvements in overall well-being. The most unsatisfactory incidents in this category were related to respect.
Since a person who has a diagnosis of cancer is very
vulnerable, the health care professionals' demeanour and
statements of understanding are important and can assist
the patient in coping with the challenge of having cancer
(Gamble 1998). Frank-Stromborg (1989) state that the
initial reactions to a diagnosis of cancer could be all kinds
of emotional distress. They developed a scale to measure
changes in attitudes towards the diagnosis, a scale which
is also useful for evaluating the result of an intervention
approach. The Committee of Health and Public Medical
Service (SOU 1997) in Sweden has proposed a new bill
stating that the patient is to be treated with consideration
and respect as well as given competent and appropriate
care. The last category, the nurse supported, had three
subcategories. The most satisfactory incidents were
related to thoughtfulness, while the most unsatisfactory
incidents were related to thoughtlessness. If the nurse
gave considerate general care and consolation, the patients
had the ability to carry on and increase their well-being in
spite of the disease. Health promotion is not an activity
relying solely on skills acquisition by the nurse, but one
that requires recognition of where power and control are
located (Caraher 1994). The results of this study, showing
# 1999 Blackwell Science Ltd, European Journal of Cancer Care, 8, 204±212
European Journal of Cancer Care
that the number of critical incidents varied between three
and 20 per informant, suggest that the need for nurses'
health promotive care differed between patients. The
healing capabilities of the individual varied as did the
social and personal resources as well as physical capacities, and some of the informants had a better ability than
others to identify with, adapt to or cope with the
environment. The better a person believed their health
to be or the more they were committed to a healthy lifestyle, the more they perceived that they were moving in
the direction of well-being. Huebscher (1992) supports this
reasoning that changes in the individual life-style, faith
and belief can lead to surprising recovery. She gives some
examples of health promotion where cancer patients
maximized their own potentials to the extent that they
experienced a spontaneous remission of cancer. Health
promotion is not just the responsibility of the health
sector ± it is a process of enabling the individual to reach
well-being, as stated in the WHO Ottawa Charter for
Health Promotion (WHO 1986). In this respect, nurses
could play an important role in guiding the individual.
CONCLUSION
The results show that the cancer patients' experiences of
nurses' behaviour and health promotive care varied, and
that those nurses who showed cognisance, knowledge and
competence were experienced in health promotion activities. Health promotive care also included nurses showing
solicitude and giving genuine individual care to the
patients. The nurses' demeanour and statements of
understanding were important and helped the patients
cope with the environment to reach well-being. The head
and neck cancer patients are a highly vulnerably group,
and it is important for nurses to identify with and help
their patients to realise aspirations and satisfy needs as
well as involving them in a healthier life-style. Oncology
nurses could reconfirm and update the care of head and
neck cancer patients by including health promotion
activities in individual care plans.
Clinical and research implications
By identifying the nurses' health promotion activities, care
plans, standards and strategies can be decided with the
aim of increasing health and maintaining quality of life
and quality of care. By using more health promotion
programmes, such as the empowerment model, nurses can
encourage the individual to attempt to reach well-being
and a healthier lifestyle. Future studies could include
randomised studies focusing on socio-cultural variation in
patients with head and neck cancer. Further studies based
on different cancer diagnoses and nurses' health promotion activities would provide further information.
Acknowledgements
Many thanks to the informants for taking an active
interest in participating in the study. NordvaÈstra SkaÊnes
SjukvaÊrdsdistrikt, Anders SjoÈblom, Co-ordinator of Education, and Arvid Ohlssons foundation are gratefully
acknowledged for their financial support.
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II
ORIGINAL ARTICLE
doi: 10.1111/j.1752-9824.2009.01029.x
Health promoting contacts as encountered by individuals with head
and neck cancer
Margereth Björklund
MSc, RN
Lecturer, PHD student, School of Health and Society, Kristianstad University College, Kristianstad, Sweden and The Nordic
School of Public Health, Gothenburg, Sweden
Anneli Sarvimäki
PhD, RN
Associate Professor, Research Director, The Nordic School of Public Health, Gothenburg, Sweden and Age Institute, Helsinki,
Finland
Agneta Berg
MSc, PhD, RNT
Associate Professor, School of Health and Society, Kristianstad University College, Kristianstad, Sweden
Submitted for publication: 15 June 2009
Accepted for publication: 11 July 2009
Correspondence:
Margereth Björklund
Lokvägen 49
S-260 33 Påarp
Sweden
Telephone: +46 42 22 87 68,
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B J Ö
O R K L U N D M , S A R V I M Ä
AKI A & BERG A (2009)
Journal of Nursing and
Healthcare of Chronic Illness 1, 261–268
Health promoting contacts as encountered by individuals with head and neck cancer
Aim. To describe the characteristics of health promoting contacts with health
professionals as encountered by individuals with head and neck cancer.
Background. Head and neck cancer has a profound and chronic impact on the
individual’s everyday life, e.g. physical problems that hinder speaking, breathing,
eating and drinking. Furthermore, fear and uncertainty can lead to long-term psychological and psychosocial problems. The National Institute of Public Health in
Sweden advocates that all care contacts should improve the quality of the individual’s health.
Design. A qualitative descriptive and explorative design was used. Eight participants
were interviewed in the year 2005 and a qualitative thematic content analysis of the
data was performed.
Findings. Health promoting contacts were defined as contacts where health care
professionals contribute positively to the well-being of individual patients. Characteristics include being available, engaged, respectful and validating. Three themes
were identified: being believed in one’s illness story; having a working relationship
with health professionals and receiving individualised, tailored care.
Conclusions. Health promoting contacts were experienced mainly during the
treatment phase, when patients had daily contact with specific, qualified health
professionals. Although the interview questions focused on health promoting contacts, nearly half of the contacts were experienced as not health promoting. Feelings
of abandonment were particularly manifested before and after treatment. The
starting point for achieving health promoting contact lies in understanding the
patient’s lifeworld in relation to health, illness and suffering and focusing on
the individual’s personal strengths and health resources.
2009 The Authors. Journal compilation 2009 Blackwell Publishing Ltd
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M Björklund et al.
Relevance to clinical practice. The findings highlighted the importance of ensuring
that patient interests and concerns are core considerations in health care. The
participants viewed continuing individualised, tailored care and access to ear, nose
and throat healthcare professionals as highly important.
Key words: head and neck cancer, health professionals, health promoting contacts,
individualised tailored care, patient centred care, supportive team
Introduction
Beyond facing the life-threatening disease of head and neck
cancer (HNC), the individual must deal with its impact on
other vital functions such as breathing, eating, drinking and
speaking (Feber 2000). In Sweden, the individual’s initial care
contact is with a general care nurse practitioner or medical
practitioner, a dentist, or an ear, nose and throat specialist.
When cancer is diagnosed, the patient and next of kin meet
with a multidisciplinary team at the regional hospital, where
decisions regarding further treatment are made (Lind et al.
2001).
Health professionals involved in HNC care could include
surgical, radiation, and medical oncology experts, dentists,
pathologists, physio- and speech-therapists, social workers,
dental hygienists, dieticians and nurses. Treatment is complex, time consuming and requires coordinating interventions
with each member of the multidisciplinary team. Depending
on the size and form of the tumour, options for inpatient or
outpatient treatment can involve surgery, radiation or chemotherapy. As head and neck cancers frequently recur,
follow-up care can extend over a period of 10 to 12 years
(Lind et al. 2001).
Patients who require information during their illness
trajectory may feel uncertain and concerned about who they
can contact with questions. Voice and speech impediments as
a result of surgery cause further barriers for accessing the
healthcare team (Johansson et al. 2008). Lord and Farlow
(1990) assert that every care contact should aim to improve
the patients’ positive potential in dealing with their illness.
Furthermore, the National Institute of Public Health in
Sweden (NIPH 2005) adds that all care contacts should be
health promoting to create a sense of confidence and security
in the patient. The authors did not find a standard definition
of health promoting contact, but terms like mutual understanding, provide hope for the future and real concern appear
in this context.
According to the World Health Organisation (WHO
1986), health promotion is expected to assist the individual
in everyday life through a process that enables people to
increase control over their well-being. Nursing and medical
262
care should tailor health promoting goals related to empowerment according to the individual’s story and needs (World
Health Organisation (WHO) 1986). Rappaport (1985) suggests that empowerment means having a sense of control over
life and the freedom to fully appreciate one’s ability to do so.
It is a process of capability, which we all have, but it needs to
be released.
From the perspective of living with HNC, research on
health promoting contact with health professionals is sparse.
Björklund et al. (2008) found an association between health
promotion and empowerment. They suggest there is an
ongoing process among reflecting with one’s inner self
(internal enabling), contacts with society and a passion for
the environment (external enabling). Contacts with health
professionals should be an additional way to support external
enabling by individuals. As patients with HNC are exposed
to many contacts with different health professionals over long
periods, it is necessary to focus on the feature of what health
promoting contacts mean for the individual with this chronic
type of cancer.
Aim
The study aims to describe characteristics of health promoting contacts with health professionals as encountered by
individuals with head and neck cancer.
Participants
This interview study was conducted in southern Sweden
during 2005. Participants were selected in consultation with
the medical and nursing staff involved in their care. All
participants were diagnosed with HNC of different forms and
stages, were older than 18 years of age and were able to
understand and speak Swedish. The latter was important as
they already had speech problems caused by their illness. The
first author (MB) contacted 17 potential participants by
letter, describing the aim and the data collection process. As
soon as the participants had given their informed consent,
they were contacted by telephone and a suitable time and
place for the interview was chosen. Eight persons agreed to
2009 The Authors. Journal compilation 2009 Blackwell Publishing Ltd
Original article
participate, four men aged 52 to 83 years (average 63Æ3) and
four women aged 61 to 69 years (average 65Æ8).
Data collection
Interviews were held one and a half to nine months after the
initial diagnosis. The participants were interviewed once. An
interview guide was constructed and used to focus on health
promoting contacts. The questions were open ended and
sensitive to the patient’s experiences. The three authors
constructed the interview guide; the first author has many
years of working experience in HNC care; the second author
is experienced in geriatric care; and the third author is
experienced in psychiatric care and psychotherapy. In addition, the questions were discussed in seminars with nursing
researchers. Consensus was achieved on the questions after
they had been tested on three patients and found to be
satisfactory.
The semi-structured, open-ended interview began with
collecting socio-demographic data, e.g. age, marital status,
children and occupation, followed by the interview questions
(Table 1). The tape-recorded interviews lasted between 60–
120 minutes. Responses were treated confidentially and the
first author (MB) transcribed all interviews verbatim. The
researcher’s extensive experience in caring for patients with
speech disorders caused by this illness was an asset as it
enabled her to conduct thorough and accurate interviews and
transcriptions. Through the use of field notes, non-verbal
language such as sighing, hoarseness, coughing attacks,
clearing the throat or spitting were noted. These behaviours
amplified feelings and experiences related to the impact of the
illness.
Ethical considerations
The study was approved by the Ethics Committee of Lund
University, Sweden (LU 772-2004) prior to data collection and
was conducted in accordance with the Helsinki Declaration
Health promoting contacts
(World Medical Association (WMA) 2004). Patients were
informed that participation was voluntary and that they could
withdraw from the study without any consequences to their
usual care. Confidentiality was assured throughout data
collection and analysis by the researchers removing any
patient identifiers from the data and by securing all data in a
locked cabinet to which only the research team had access.
A qualitative descriptive design using open-ended interview
questions was used to obtain information about the experience of health promoting contacts as described by HNC
patients. Individual interviews were chosen as this is considered appropriate for gaining an understanding of the
individual’s situation and life experiences (Lincoln & Guba
1985).
Data analysis
A thematic content analysis was used to analyse the data.
This is an interpretative process where researchers take the
context into consideration (Baxter 1991). Themes are threads
of meaning and Burnard (1995) described different levels of
interpretations ranging from the concrete level of the spoken
word to the deeper level of meaning. Polkinghorne (2006)
claims that researchers themselves serve as data gathering and
analytic instruments in qualitative studies. Hence, the present
study drew on both Baxter’s (1991) and Burnard’s (1995)
guiding principles to help analyse and interpret the data. Preunderstanding among the three authors differed, as they were
nurses trained in different care contexts. The researchers’ preunderstanding influenced the research process and required
reflection along with deliberation.
They were open-minded in the interpretation process and
tried to notice things that were not clearly expressed in the
transcripts. All authors were experienced in qualitative
research. This analysis is widely used in HNC research when
showing the patient’s view of everyday living and nursing
(Semple et al. 2008), emotional vulnerability (Griffiths et al.
2008) or complex communication situations (Leydon 2008).
Table 1 Guide used for the semi-structured open-ended interview
Questions
Probing questions
Tell me, what is it that gives you a feeling of well-being when you are in contact with health
professionals?
Tell me about a situation where health professionals showed consideration for your
viewpoints on what makes you feel better?
Tell me about a contact in which health professionals strengthened and encouraged you in
such a way that you experienced a sense of well-being?
Tell me about some of the things you would hope to expect from health promoting
contacts, or any advice you may wish to give.
Who were they and what did they do?
What did you do, think or feel?
How did you react?
How did you feel about that?
How do you feel now after the interview?
Would you like to add anything else?
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M Björklund et al.
The data analysis proceeded as follows:
1 The interviews were transcribed verbatim and read and
reread to become familiar with the data and make notations of initial ideas. After reading the text, the first and
third authors’ initial impression was that contacts with
health professionals were not always experienced as health
promoting. Contacts consisted of three types throughout
the entire illness trajectory; health promoting, not health
promoting and desire for health promoting contacts.
2 The first author reread the text, sentence by sentence, to
identify meaning units, i.e. constellations of words or
statements that related to the same central meaning. The
researchers agreed that all contacts should be identified,
distinguished and classified as either health promoting or
not health promoting. A criterion for health promoting
contact was if the patient experienced well-being and
confidence after the contact. The meaning units that contained the participants’ desire for health promoting contacts were classed together with not health promoting
contacts.
3 All meaning units with the three types of different contacts
were then grouped together according to the period in the
trajectory when they originated, i.e. before, during or after
treatment. Further, all meaning units were condensed and
labelled with a code.
4 All coded data were examined further by searching for
similarities and differences between the codes. Data with
similar content were grouped together and named as preliminary themes.
5 The data were subsequently analysed and discussed with
the third author to search for patterns in the health promoting/not health promoting contacts. During the entire
analysis process, the first and third authors discussed and
compared the interpreted text. They cogitated over it until
they concurred on the themes. In the final stage, the second
author judged the findings. A final discussion was held to
achieve a credible interpretation, taking into account the
aim and the authors’ pre-understanding.
Methodological considerations
A thematic content analysis was chosen (Baxter 1991) since
this form of inquiry is based on how individuals perceive
matters from their own point of view, reflecting the specific
truth and reality of their health. Findings from a study of this
kind need to be evaluated in terms of trustworthiness
credibility, dependability, confirmability and transferability
(Lincoln & Guba 1985).
Credibility was assured by presenting views from both
genders and by selecting participants with HNC. Sampling
264
had to be performed in consultation with the medical and
nursing staff involved in participants’ care. This was necessary to comply with the confidentiality requirements placed
on the health services. Eight of the 17 informed individuals
participated, indicating that many did not want to participate. Although the sample size was small, the participants
gave rich descriptions and were eager to share their experiences, thereby fulfilling the need of this study. It should be
noted that one of the participants heard about the study and
took the initiative to contact a nurse at the ward. This
participant was recovering from surgery in the lower region
of the mouth and had the greatest difficulty speaking. The
interview lasted the longest (over 120 minutes), but was the
most concise. All participants had speech problems, e.g.
hoarseness, dryness, phlegm, coughing or articulation problems. This could have contributed to some lack of understanding. However, the researcher allowed ample time to
create an atmosphere of trust, listening carefully and with
concentration to the participants’ statements. If necessary,
the researcher probed during the interview to clarify participants’ statements or topics of conversation. There were no
awkward silences or unwillingness to speak. The interview
guide and the final question, i.e. where interviewees were
asked what they would hope to expect from health promoting contacts (Table 1), helped obtain further information
about the participants’ reflections.
Tape recording assured dependability and verbatim transcripts informed the researchers accurately about the content
of the interviews. Careful documentation assured confirmability. A concern of the authors regarding information
provided by the participants was that the findings should
mirror their voices and the study context. To enhance the
accuracy of the research, the co-authors cogitated over
and re-evaluated the analysis and the readers could act as
co-examiners when reading the quotations.
Transferability can be considered successful if HNC
patients and health professionals working in this context
are able recognise the descriptions and interpretations. Given
the similarities among participants and settings, these findings
could be transferable to people living with other speech and
eating disorders, e.g. individuals with neurological diseases
such as stroke or amyotrophic lateral sclerosis. However, it
should be noted that prior to transferring findings from a
Swedish context, one must consider aspects related to the
specific contexts in other countries.
Findings
The participants described a complex story, interwoven with
both health promoting and not health promoting contacts.
2009 The Authors. Journal compilation 2009 Blackwell Publishing Ltd
Original article
Even though the interview questions focused on health
promoting contacts, nearly half of the contacts were
experienced as not health promoting. Health promoting
contacts were ones in which the attributes of the health
professionals were: engaged, respectful and able to validate
feelings. Health promoting contacts were experienced mainly
during treatment and hospitalisation, or when there were daily
contacts during treatment (whether or not the individual
stayed in the patient hotel), or the possibility to make contact
with health professionals if the need arose. By contrast, not
health promoting contacts were experienced predominantly
before and after treatment. These contacts were experienced as
stressful and at times were accompanied by feelings of
abandonment, vulnerability and insecurity. The patients felt
lost among the many different types of health professionals.
Since the findings revealed both health promoting and not
health promoting contacts, the quotations below are preceded
by symbols indicating health promoting contacts (+) and not
health promoting contacts ( ).
Health promoting contacts
( ) I was due to be discharged … I explained that I could hardly
breathe or swallow … that I lived alone and even my daughter was
anxious … neither the doctor nor the nurse understood me// (+) then
one of the nurses that worked in the afternoon believed me … she
said: he cannot manage by himself, and he should not be discharged
… she will be an eternal friend (3).
Having a working relationship with health professionals
This second theme describes the significance of wellfunctioning communication, cooperation and a relational
approach to treatment. The participants expressed despair
with what they experienced to be superficial talk from health
professionals whose behaviour was dominating or inconsiderate. Also, some participants described encounters with
health professionals who imparted one-way information and
when the participants did not understand the information,
they felt lost as they could not ask questions.
( ) He illustrated on himself and said: We will make an incision …
and then he started talking about ‘shelves’ … it was abstract and hard
Being believed in one’s illness story
to understand … of course, he told me in a way that he thought was
good, but I didn’t understand a thing. … I didn’t feel very good, I was
The first theme describes the importance of health professionals listening to and believing patients and showing
validation when the patients were telling their illness story.
This was important throughout the whole trajectory of
care. Patients felt that an attentive and humble attitude on
the part of caregivers was important. Health professionals
did not always seem to be listening or respect the patient’s
opinions when they asked to be referred to specialist
clinics; in many cases, they were ignored. Self-diagnosis
was often met with scepticism and patients had to
repeatedly convince health professionals that something
was wrong. The side effects of treatment, both radiation
therapy and surgery, could be severe, unique and longlasting, and it was important for the participants to feel
that they were listened to when they described their
different problems.
( ) For four years I requested a cancer check of my tongue … nobody
believed me (sigh and deep ventilation) until finally I was called to see
a specialist … only to be told by him that it was wrong of me to have
waited so long (5).
( ) It’s strange, but after they removed pieces of bone from my fibula
and placed them in my jaw I’ve had lots of problems with my leg and
can’t straighten my big toe. … I’ve told this to every doctor, but they
don’t seem to care. (2).
Not health promoting contacts were not frequently experienced during hospitalisation; however, they could occur.
a little shocked (2).
( ) The dentist advised me to remove my prosthetic palate and clean
it after every meal … but he did not show me how to do it, or what to
use … had he done this it would not have taken three weeks for me to
work it out (hyperventilation) (6).
Some individuals experienced specific problems in the course
of treatment. Pre- and post-operatively and during hospitalisation they needed specific care, and at times access to
certain items such as a notepad, pencils or a bell.
( ) I couldn’t speak since I had a tracheal tube in my throat … I
requested pen and paper … I was given a ballpoint pen, but the ink
was dry. … I was then offered a lead pencil, which I had to look for
every time I needed to write … when my husband came he attached a
thread to the pencil, which he tied to the writing pad (2).
The participants described health professionals who lacked
specific qualifications in HNC care. However, they could
compensate for this by being attentive and perceptive to
the individual’s needs. The participants experienced good
teamwork and practical working relationships, e.g. during
radiation therapy, when both the patients and the health
professionals were observant of each other’s body language.
(+) The district nurse gave me psychological strength … for instance,
we spoke a lot about how I manage when I have difficulty eating or
drinking (3).
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M Björklund et al.
(+) I had a swelling in my throat and needed to spew before lying
down for my radiotherapy, and that was the first thing I did when
I got up … but I was allowed to take my time, and they were helpful
and understanding (3).
Receiving individualised, tailored care
The third theme highlights the need for individually tailored
care for patients with HNC. Individuality in this context
was of prime importance since multiple and severe problems
were not uncommon, e.g. nose bleeding, eating difficulties
and/or speaking and breathing impairments. The participants experienced frustration from telephone queues and
distressing bureaucracy, e.g. appointments being made when
no letter of referral had arrived, or indeed had not been
written. Bureaucracy also involved signing prescriptions and
forms or arranging for travel reimbursement, medication
and nutritional drinks. Patients felt abandoned or misled
when circulating among different clinics and health professionals.
( ) I was number 49 in the telephone queue … 30 minutes later a
pre-recorded voice requests my telephone number so that the call
might be returned … but the call was not returned. … I then rang
the local emergency clinic in another town, but no one from the
ear, nose, and throat clinic was available. Insufferable! After that,
I got a time at the ear, nose, and throat clinic, and then it went
fine (8).
( ) I had a fistula in my throat. … Insufferable! I wanted to
telephone the ear, nose, and throat clinic … but I had no telephone
number (3).
( ) They just remit patients from one place to another without
knowing what forms to fill in (hyperventilation) … it’s so
exhausting (6).
The participants described health promoting contacts as
individualised, continuing care when having contact with e.g.
physicians, dieticians, dentists, dental hygienists and nurses.
Information and advice could vary and participants expressed
a need for access to a contact nurse with whom they were
acquainted, as the nurse could offer a sense of security.
(+) It was only two hundred metres to the dental hygienist and on one
occasion I had bad pain in my mouth … then she called the dentist
to prescribe medication for thrush… I felt that I was well taken
care of (2).
(+) The contact nurse was good, but she had retired… they couldn’t
fill the vacancy…I think that only an experienced person could have
the capability to handle this… just to learn to be patient to
understand someone with a speech impediment like mine (5).
266
Discussion
This study aimed to describe the characteristics of health
promoting contacts with health professionals as encountered
by individuals with head and neck cancer (HNC). The results
of this study begin to suggest that health promoting contacts
were more often absent than present during the illness
trajectory of these patients. If health promoting contacts were
encountered, it was mainly during the treatment from
specially trained health professionals. Health promoting
contacts were ones in which the attributes of the health
professionals were: engaged, respectful and able to validate
feelings.
Findings from this study are consistent with the Institute of
Medicine (IOM) (Staggers 2004) goals of patient centred care
and raise awareness of the fact that individuals are experts on
their own illness experiences. This was especially obvious in
the first theme when participants experienced difficulty in
being believed when telling their illness story. Bezold (2005)
proclaims that inherent in patient centred care lies respect for
the patient’s values, preferences, expressed needs, and physical comfort, emotional support, and continuity with information, education and shared responsibility. There is
widespread agreement that patient centred care is one aspect
of quality in health care and gives patients support as they
move through different care settings for prevention and
treatment (IOM 2000).
The participants described lack of health promoting
contacts, especially before treatment, as there was less
likelihood of being understood, respected or even listened
to. Hence, this led to repetitive contacts, waiting for new
appointments and unnecessary delays before a diagnosis
was made. These experiences correspond to those reported
in a study of the doctor–patient relationship. The study
indicated that contact without a real concern for the patient
or that neglect their psychosocial problems, could lead to
unnecessary referrals, inappropriate treatment and dissatisfaction and dejection on the part of the patient (SBU 1999).
Perhaps there is a need to be aware of health professionals’
beliefs and attitudes towards the competence of individuals
when they feel that something is wrong with their body.
Research has also shown that diagnostic delays were often
attributed to dentists or other practitioners (Tandon et al.
2005). Perhaps there is a need to enhance competence
among the general public as well as primary health care and
dentistry as these health professionals are often in the
forefront when the initial contact is made. Patients appeared
to gain psychological strength when health professionals
involved them as an equal member of the team, e.g.
listening to and respecting the patient’s suggestions for
2009 The Authors. Journal compilation 2009 Blackwell Publishing Ltd
Original article
solving problems in managing eating and drinking. This
could enable patients to move forward in the empowerment
process (Björklund et al. 2008). Further, when practising
patient centred care, information technology is central for
caregivers and patients alike, e.g. to extend their medical
knowledge and skills (Staggers 2004). Aujoulat et al. (2007)
concur that there is a need for contacts where both sides
offer continuity and self-involvement since empowerment is
necessarily individual-centred and based on experiential
learning.
The findings in the study draw attention to the unique
impact of HNC on vital functions of the individuals
concerned, confirming earlier research that this type of
cancer manifests a complex phenomenon in a specific context
(Larsson et al. 2003). Research has shown that the eating
problems are chronic and could lead to physical and
psychosocial difficulties in everyday living (Anderson &
Franke 2002). The problems can change eating behaviour,
leading to fatigue and withdrawal from family and friends.
This study found that if the patient is well-known, it eases
the individual’s speaking problems. Access to specialised
health professionals who understand the patient’s needs, e.g.
when experiencing hoarseness or difficulty in articulation,
might be a greater contribution towards patient safety. One
proposal advocated giving individuals with HNC around-theclock, priority access to the nearest ear, nose and throat clinic
when the need arises.
Standardised guidelines are often used in planning the
frequently complicated and lengthy treatments (Lind et al.
2001). The present study indicates that such guidelines might
be inadequate for the unique needs of individual patients. A
lack of health promoting contacts, both before and after
treatment, could lead to feelings of despair, abandonment
and isolation during the long illness trajectory. Hence, every
patient ought to have individually tailored care plans starting
from the first care contact and throughout the whole illness
trajectory. These care plans should be adjusted to the
individual’s needs during this time.
The present study also revealed problems with bureaucracy. Anniko (2006) contends that care structures have
changed within the last decade and more treatments and care
for HNC are available on an outpatient basis. Therefore,
supportive clinics need to be encouraged as a means to meet
these patients’ practical and emotional needs related
to knowledge, care and support (Larsson et al. 2007,
Wiederholt et al. 2007). In addition, Lee et al. (2008)
recommend more development of interpersonal and communication skills, professionalism, system-based practise and
practice-based learning for all health professionals working in
different HNC care contexts.
Health promoting contacts
Strengths and limitations
This study comprised interviews with eight individuals
with head and neck cancer and although those interviews
were open, reflective and provided rich descriptions, the
study has limitations. However, generalisability was not
the aim of this study and the limitations of having so few
participants is acknowledged. The potential lies instead
in the possibility of achieving greater depth in the
analysis and in generating hypotheses and new research
questions.
Conclusions
Characteristics of health promoting contacts were: available,
engaged, respectful and validated contacts that made a
positive contribution to the well-being of the individual.
Health promoting contacts were experienced mainly during
the treatment period, when patients had daily contacts with
specific, qualified health professionals. Before and after
treatment, nearly half of the contacts were experienced as
not health promoting and feelings of abandonment or
insecurity were manifested. Continuous care that was tailored, and focused on the individual’s strengths, enabled the
patients in this study to feel empowered. These findings
showed the importance of making the patient’s perspective a
priority in health policy and planning. Further research is
needed to extend the knowledge of health promotion and to
investigate how to enhance the empowerment process for
patients and their families.
Acknowledgements
We are grateful to the participants for generously sharing
their experiences and to Ron Gustafson for revising the
language. This study was supported by Kristianstad University College, the Nordic School of Public Health and the
Swedish Nurses Association (SSF).
Contributions
Study design: MB, AB, AS; data collection: MB; data
analysis: MB, AB, AS and manuscript preparation: MB, AB,
AS.
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2009 The Authors. Journal compilation 2009 Blackwell Publishing Ltd
III
Errata article III
Error
Correction
Article III page 27, Introduction, line 17
The objective goal of treatment is
survival, while the subjective goal is
well-being, which requires the cooperative efforts of a …
The goal of treatment is survival and
well-being, which requires wellfunction co-operative efforts by means
of a …
ARTICLE IN PRESS
European Journal of Oncology Nursing (2008) 12, 26–34
Available at www.sciencedirect.com
journal homepage: www.elsevier.com/locate/ejon
Health promotion and empowerment from
the perspective of individuals living
with head and neck cancer
Margereth Björklunda,b,, Anneli Sarvimäkib,c, Agneta Berga,d
a
Department of Health Sciences, Kristianstad University, SE-29188 Kristianstad, Sweden
The Nordic School of Public Health, Gothenburg, Sweden
c
Age Institute, Helsinki, Finland
d
Faculty of Social Science, University of Stavanger, Norway
b
KEYWORDS
Head and neck
cancer;
Health promotion;
Empowerment;
Person’s perspective;
Qualitative;
Nursing
Summary
The aim of this study was to shed light on health promotion from the perspective of
individuals living with head and neck cancer. Eight informants were interviewed and latent
content analysis was used. Individuals living with head and neck cancer experienced many
problems that had a negative impact on their health. One overarching main theme was
demonstrated; the ability to regain control and empower oneself. Three themes emerged:
(1) Being enabled by dialogue with one’s inner self, including three sub-themes:
transformed and improved self-esteem, recognising and embracing existentiality, and
increased self-determination. (2) Being enabled by means of contact with a social
network, including two sub-themes: emotional support and practical support. (3) Being
enabled by means of contact with and a passion for the environment, including two subthemes: nature, hobbies and activities. Empowerment, the goal of health promotion, was
understood as an ongoing process, and the ability to promote health varied and was
dependent on internal and external enabling of acting and doing. The interpretation of this
ongoing process demonstrates interplay assisted by a dialogue with one’s inner self,
contact with a social network and a passion for the environment. Altogether, these findings
may inspire nurses and other health care professionals to support the individual’s
empowerment process and pose non-pathology-oriented questions such as ‘‘what improves
your health?’’ or ‘‘what makes you feel good?’’
& 2007 Elsevier Ltd. All rights reserved.
Zusammenfassung
Das Ziel dieser Studie bestand darin, Informationen zur Gesundheitsförderung aus Sicht von
Patienten mit Kopf- und Halstumoren zu erhalten. Es erfolgten Interviews mit acht
Personen sowie eine Analyse von latenten Inhalten. Patienten mit Kopf- und Halstumoren
hatten mit zahlreichen Problemen zu kämpfen, die sich negativ auf ihre Gesundheit
auswirkten. Es wurde ein übergreifendes Hauptthema deutlich: die Fähigkeit, die Kontrolle
über sich selber zurückzugewinnen und zu Empowerment. Ferner zeichneten sich drei
Themen ab: (1) Fähigkeit zum Dialog mit sich selber (inner self), mit drei Unterthemen:
Corresponding author. Lokvägen 49. SE-260 33 Påarp, Sweden. Tel.: +46 42 22 87 68, +46 70 27 633 18; fax: +46 44 20 40 43.
E-mail address: [email protected] (M. Björklund).
1462-3889/$ - see front matter & 2007 Elsevier Ltd. All rights reserved.
doi:10.1016/j.ejon.2007.09.003
ARTICLE IN PRESS
Health promotion and empowerment of individuals living with head and neck cancer
27
verändertes und verbessertes Selbstwertgefühl, Erkennen und Akzeptieren von Existenzialität sowie verstärkte Selbstbestimmung; (2) Kontaktfähigkeit zu einem sozialen
Netzwerk, mit zwei Unterthemen: emotionale und praktische Unterstützung; (3)
Kontaktfähigkeit zur Umwelt und Begeisterung für die Umwelt, mit zwei Unterthemen:
Natur, Hobbies und Aktivitäten. Empowerment, das Ziel der Gesundheitsförderung, wurde
als fortlaufender Prozess verstanden; die Fähigkeit zur Gesundheitsförderung variierte und
war abhängig von der internen und externen Fähigkeit zum Agieren und Handeln. Bei der
Interpretation dieses fortlaufenden Prozesses zeigt sich ein Wechselspiel mit Unterstützung durch Dialog mit sich selber, durch Kontakt mit einem sozialen Netzwerk sowie
Begeisterung für die Umwelt. Insgesamt könnten diese Befunde Pflegekräfte und andere
Angehörige der Medizinberufe dazu motivieren, den Empowerment-Prozess des Patienten
zu unterstützen und nicht-krankheitsorientierte Fragen zu stellen wie: Was ist gut für
’’
Ihre Gesundheit? oder: In welchen Situationen fühlen Sie sich wohl?
’’
& 2007 Elsevier Ltd. All rights reserved.
’’
Little is known about what promotes health from the
perspective of individuals living with head and neck cancer.
To a great extent, research in this area is confined to the
disease itself, its treatment and side effects such as difficulty breathing, speaking, drinking and eating (Ledeboer
et al., 2005).
In Sweden, head and neck cancer represents 3% of all
malign tumours and the number of persons who contract this
disease each year is approximately 1300 (Anniko, 2006).
Sites include the lip, tongue, floor of the mouth, gum, other
oral cavity sites, salivary glands, oropharynx, hypopharynx,
nasopharynx, larynx, nose, sinuses, ear and thyroid. The
disease differs in pathogenesis, tumour biology, location,
diagnosis, prognosis, treatment and impact on everyday life.
Treatment comprises surgery, radiation and chemotherapy
individually or in combination (Anniko, 2006). The objective
goal of the treatment is survival, while the subjective goal is
well-being, which requires the co-operative efforts of a
multidisciplinary team of head and neck cancer experts
(Harrison et al., 1999).
Eating difficulties are common consequences of the
disease or side effects of treatment and are associated with
chewing, swallowing, taste changes, mouth dryness and
weight loss (Anniko, 2006). It constitutes a complex
phenomenon and causes long-term problems, although
nutritional teaching programmes led by nurses and dieticians have been shown to be beneficial (Larsson et al.,
2005). Eating difficulties in combination with visible disfigurement are commonly associated with psychological
distress, i.e. anxiety and depression, for that reason the
individual concerned may require long-term psychological
and psychosocial support (Anderson and Franke, 2002).
Speech difficulties can complicate life as well as the
contact with health care professionals. However, new
techniques such as electronic health information can
minimise this problem (Van den Brink et al., 2005).
Furthermore, support and education in a home setting could
improve and facilitate communication within the family and
staff involved in their care (McLane et al., 2003).
Since this type of cancer is located in the body’s most
visible part it can cause discomfort and suffering as well as
’’
Introduction
affecting one’s self-esteem (Callahan, 2004). Anxiety,
depression, uncertainty and hopelessness are the most
frequently reported psychological problems, and living with
this cancer could both enhance personal growth or damage
and even destroy self-esteem (Ledeboer et al., 2005).
Lindenfield’s (1996) research could be valuable, affirming
that if a person believes that he/she is worthless, ugly and
incapable feelings of negativity and depression could be
generated. Further, if their thoughts are positive, their
feelings and behaviour will correspond, thus enabling them
to present themselves in the best possible light. Dropkin
(1999) claims that self-care can be beneficial and reduce
anxiety in disfigured persons, since it helps them to find
their true self and adapt to their new body image.
Additionally, Feber (2000) highlights coaching in intrapersonal skills as a means of promoting optimum health and wellbeing for the individual. Further, Mok and Martinson (2000)
found that persons with cancer find inner strength through
connection with others. Besides that, when focusing on
resources rather than health deficits, the health professionals can more effectively influence the individuals’
thoughts and attitudes in a positive way (Mok et al., 2004).
Health and hope are inherent parts of health promotion
(Naidoo and Wills, 1998) and is a process of enabling people
to increase control over the determinants of health (WHO,
1986). Health determinants are multiple and interactive;
they do not only relate to health behaviour and lifestyles,
but also to factors beyond the control of the individual
(Nutbeam, 1998). The process by which people gain control
over decisions and actions that affect their health, is called
empowerment and is based on the ability to achieve
one’s potential and respond to environmental challenges
(Nutbeam, 1998).
Health promotion is considered an implicit part of nursing
(Hinshaw, 2000). Berg and Sarvimaki (2003) accentuate
the importance of health care professionals meeting the
needs of patients and families in their effort to cope with
health changes. Richardson (2002) claims that patients want
nurses to interact and focus on them as a person. This
approach promotes effective communication and enhances
understanding and insight, thus maintaining psychological
well-being as well as increasing comfort and confidence. Therefore, treating the individual in a holistic and
ARTICLE IN PRESS
28
humanistic way by means of consideration, competence and
understanding is important for health promoting nursing
(Bjorklund and Fridlund, 1999).
It is important to gain knowledge about how these
individuals find ways to promote health. Since living with
this illness could entail a disturbance of normal existence
and uncertainty associated with possible illness progression
or recurrence, difficult treatment side effects and complications (Ledeboer et al., 2005). Though research of what
promotes health from an insider perspective has rarely been
done and the individual is an expert on his/her experiences,
it seems fair to assume that increased knowledge of this
could result in a new understanding of what could facilitate
everyday life with head and neck cancer. The aim of this
study was to shed light on health promotion from the
perspective of individuals living with head and neck cancer.
Method
A qualitative design was used since such a design is
considered appropriate for understanding an individual’s
situation and life experiences (Berg, 2004). Qualitative
studies emphasise awareness of human experiences, as
experienced by the individuals themselves in their natural
context (Polit and Beck, 2004).
Participants
Eight persons, four men, their age ranging from 52 to 83
years (average 63.3) and four women aged 61–69 years
(average 65.8), participated in the study. Every one of them
had different forms of head and neck cancer; five had oral
cancer, one had maxilla cancer, one had thyroid cancer and
one had cancer on the surface area of the face. Six
participants had lymphatic gland metastasis and three had
recurrences in the area around the first tumour. The time
between the diagnosis and the beginning of the study, varied
from one and a half to 9 months. All were treated with
surgery and curative intent and six of them got radiation
before surgery and one radiation after surgery. One
participant had additional chemotherapy besides surgery
and radiation. Four were married or cohabiting and four
lived alone; of the latter, two were divorced, one was a
widower and one was single. Five had children and grandchildren and three were childless. Three participants
worked as engineers, one worked as salesman, one worked
as shop assistant, one worked now and then as district
visitor. One participant had retired as a teacher and one had
retired as a gardener.
Data collection
The study was conducted in the southern part of Sweden
over a 7-month period in 2005. The participants were
purposively selected in consultation with medical and
nursing staff involved in their care. They were above the
age of 18 and able to understand and speak Swedish,
diagnosed and treated for different forms of head and neck
cancer. A list of names and addresses of 17 potential
participants was given to the first author (MB). All potential
participants were contacted by a letter which described the
M. Björklund et al.
Table 1 Guide used for the semi-structured interview
on the subject of what promotes health.
Questions
Probing questions
Can you describe an
ordinary day from morning
until bedtime?
Can you tell me what
health is for you? Can you
tell me what you do in
order to feel well; what
promotes your health?
Can you tell me what/who
gives you strength and
power?
Can you tell me if you
think your life would have
been different if you had
not required treatment
for HNC?
What did you do, how did
you think, feel and react?
Body, mind, spirit; eating,
breathing, talking,
appearance, existential
issues, religion
Social life; friends,
leisure, activities, nature,
animals. Self-care
Future?
How do you feel?
Would you like to add
something?
purpose of the study and the data collection method.
Immediately after the interviewer (MB) received the
informed consent from eight participants, these were
contacted by telephone and a suitable time and place for
the interview was chosen by each participant. Nine
potential participants did not reply and for that reason
were not contacted. An interview guide was constructed and
used. The semi-structured interview began by collecting
socio-demographic data: age, marital status, children,
occupation, diagnosis and treatment, after which the
questions, presented in the first and second columns of
Table 1, were posed in order to guide the conversation.
Three test interviews were conducted and when it became
apparent that the participants tended to focus on their
contact with health personnel as opposed to everyday life,
the interview guide was divided into two areas, one dealing
with the subject of what promotes health in the contact
with health personnel and the other with what promotes
health in everyday life. The present study focused on the
latter area and each and every one was interviewed and the
data from the test interviews were included.
Three participants were interviewed in a room at the
hospital and five in their own home. They were invited to
reflect as openly and deeply as possible and the interviews,
which lasted 60–120 min, were audio-taped, treated confidentially and transcribed verbatim by the first author (MB).
Non-verbal expressions, e.g. silence, laughter, posture,
gestures, sighs, hoarseness, attacks of coughing, clearing
one’s throat or spitting were noted in the text.
Ethical considerations
This interview study was performed in accordance with the
Helsinki Declaration (WMA, 2004) and approved by the
research Ethics Committee at Lund University, Sweden
(LU 772/2004). The head physician of the hospital in which
the participants had been treated was informed about
and approved the study. Information was provided to
ARTICLE IN PRESS
Health promotion and empowerment of individuals living with head and neck cancer
prospective participants in both written and oral form by the
first author (MB) upon receipt of their written consent. They
were informed that participation was voluntary, that they
could withdraw at any time and that it would not affect
their future contact with the health care services. Confidentiality and integrity were ensured, as no information by
which the participants could be identified was included.
Data analysis
Latent content analysis (Berg, 2004) was performed to
analyse the interview text that involves an interpretive
reading of the symbolism underlying the data, in order to
reveal the deep structural meaning conveyed by the
message. Burnard (1995) claims that there are different
levels or dimensions of interpretation; ranging from the
concrete surface level of the words used to the deeper
level of meaning, whereby many shades of interpretation
are possible. When using the latent content analysis the
researchers pre-understanding is treated as a part of the
interpretation process as well as a tool that guides it.
The authors’ pre-understanding differed; the first author,
who conducted the interviews, is familiar with the context
in terms of being a nurse with many years’ experience of
caring for persons with head and neck cancer and also has
some knowledge of qualitative research. The second
author’s pre-understanding relates to her research in the
field of geriatric care and vast experience of qualitative
research. The third author’s pre-understanding is related
to both psychiatric and somatic care, experience as a
psychotherapist and qualitative research.
The data analysis proceeded as follows:
(1) The interviews were listened to carefully and the first
and third author read the whole text as open-mindedly
as possible, in order to gain a sense of the whole and to
formulate ideas for further analysis. After which they
met for the purpose of agreeing on a structure for
sorting out the text. The text seemed to relate to that
health was promoted by means of: ‘‘oneself; family and
others and various activities’’.
(2) The first author reread the text sentence by sentence in
order to identify meaning units, i.e., constellations of
words or statements related to the same central meaning.
These statements were marked, condensed, put into table
form and labelled with a code. The coding was the first
latent interpretation of the text. In order to ensure a
reasonable interpretation, the substance of the codes was
Table 2
29
critically analysed, questioned, read and compared in
relation to the research question and the first and third
authors’ pre-understanding. The codes were compared
with each other and sorted into one of the three areas.
(3) The codes were discussed and the main theme and
themes determined, resulting in a second interpretation. The text pertaining to each theme was reread and
sorted according to its content and divided into
different sub-themes. Examples of the analysis procedure can be seen in Table 2.
(4) The second author evaluated the findings and a final
discussion took place in order to arrive at a reasonable
interpretation, taking the research questions and the preunderstanding of all three researchers into account.
Agreement was reached concerning the third and final
interpretation of the main theme, themes and sub-themes.
Findings
One overarching main theme seems to characterise health
promotion as ‘‘the ability to regain control and empower
oneself’’. It was interpreted as an ongoing process and
interplay between different actions for the promotion of
physical, mental, social, emotional and existential health,
the outcome of which illustrated that best possible wellbeing is necessary in order to achieve one’s goals. The
impact of the disease and the side effects of treatment were
experienced as various illness-related difficulties. The main
theme comprised three themes: ‘‘Being enabled by dialogue
with one’s inner self’’, ‘‘Being enabled by means of contact
with a social network’’ and ‘‘Being enabled by means of
contact with and a passion for the environment’’.
Being enabled by dialogue with one’s inner self
The participants focused and used all their senses and
actively sought to create a dialogue with their inner selves
when using mental training and thinking positively. Believing
in their own abilities enabled them to do things they had
never done before, which in turn created a feeling of
triumph. Three sub-themes emerged: ‘‘Transformed and
improved self-esteem’’, ‘‘Recognising and embracing existentiality’’ and ‘‘Increased self-determination’’.
Transformed and improved self-esteem
The participants increased their self-confidence by prioritising strength and establishing boundaries, as well as limiting
The analysis procedure with meaning unit, condensation, code, sub-theme and theme.
Meaning unit
Condensation
Code
Sub-theme
Theme
To be outdoors walking
in the fresh air and
taking some exercise y
yes it is very important
y yes I feel good inside
then (1)
Outdoors
walking, fresh
air, exercise, feel
good inside
Well-being as a result of
nature and exercise
(first interpretation)
Nature (second
interpretation)
Being enabled by means
of contact with and a
passion for the
environment (third
interpretation)
The participant’s interview number is indicated in brackets.
ARTICLE IN PRESS
30
M. Björklund et al.
their social life in order to conserve energy. Both consciously
and subconsciously they built up their own self-image, were
proud to serve as role models and considered it crucial not
to act as a victim of circumstances. It was important to be
appreciated and respected by others and to maintain one’s
role in the family. Humour in combination with positive
thoughts and feelings helped them to socialise, irrespective
of their changed appearance. Diaries, tape recordings and
photos assisted them in recalling and reconciling themselves
to their experience of the illness.
If I am to retain some of my strength I have to say No,
as I must keep it for myself. // I have demonstrated
that, despite all setbacks, I have managed to come back
and I work a little y in that way I may perhaps be a role
model (5).
I think of fun things // my diary is super for supporting my
memory (2).
Recognising and embracing existentiality
The participants seemed to acknowledge existence and to
possess awareness of being totally present in the here and
now; feelings that can almost be compared to a religious
experience. In view of the fact that they had survived, they
now placed a greater value on the home and on each new
day and realised the importance of doing things before it
was too late. It was as if they stopped life’s treadmill and
reappraised life and recognised and enjoyed small things.
I value my life and I am really grateful for each day happy
to be alivey I think it is important to put a gilt edge on
life and do pleasant things every day (1).
I think that it’s good to be able to have a glass of wine or
beer y if you can swallow it (7).
Increased self-determination
The text showed the participants’ process of solving
problems and capability and adeptness to regaining power.
This was shown as a physical and mental struggle to gain
control and establish new habits; they learnt, tried and tried
again and re-learnt. Changing or breaking former life-style
habits such as smoking and alcohol consumption led to a
feeling of contentment. In order to make communication
easier they learned self-control by speaking slowly and using
synonyms that were easier to pronounce or articulate. Oral
care after eating, in order to ensure a healthy and fresh
mouth, was a time-consuming everyday task. Technical skills
such as special movements for mouth and lymph swelling
were developed. Pain caused by neck dissection, jaw muscle
spasm or leg pain due to the removal of tissue for mouth
reconstruction was controlled by exercise.
I usually say that giving up smoking is a combination of
will power and character (coughs, clears the throat,
drinks) y yes, I’m glad I don’t smoke any more // I have
to take care of myself y I removed the tube myself y I
was tired of it y now one has to stand on one’s own two
feet (3).
Even puréed food is too thick so I have to drink something
with it y if it’s too thin I cough and when I eat a banana I
have to mash it and poor yoghurt or coconut milk over it
to make it smooth enough for me to swallow (5).
Being enabled by means of contact with a social
network
The text showed the importance of establishing a connection and relationship with family or friends. Four of the
participants cohabited and four lived alone. The latter ones
had extended families relatives, good friends, work colleagues or neighbours who supported them. Two sub-themes
emerged: ‘‘Emotional support’’ and ‘‘Practical support’’.
Emotional support
It was essential to have someone close to talk to about
thoughts and reactions related to the disease someone who
could be reached 24 h a day, 7 days a week someone who
dared listen to their anxieties, fears and anguish and
who consoled them led to a feeling of trust and confidence.
The resulting closeness created a stronger and deeper
relationship as well as greater openness; e.g., bodily control
was promoted when friends reminded them to stretch their
neck, which was lopsided as a result of neck surgery. Hugs,
comforting meetings, humour and laughter promoted health
as well as a positive attitude. Phone calls, visits, postcards
or flowers inspired hope and belief in the future. The
findings also showed that the special ties between persons
who have or have had cancer created a feeling of sharing
illness, confirmation and togetherness.
When you have spoken to this person, you feel as if a
weight has been lifted from your shoulders. // It’s
enough that they are there; they don’t have to do
anything (5).
He grabbed me firmlyy between the shoulders and
looked straight into my eyes and said y you just have to
go through this y if you see the light at the end of the
tunnel behind me, you will soon be there y if you just
struggle (8).
Practical support
Help with domestic tasks such as cleaning, cooking, laundry,
driving, shopping or gardening was the most common form
of practical support. Some of the participants received
support with personal hygiene and getting ready for bed.
A few participants had difficulty communicating, thus help
with phone calls was much appreciated; someone who could
act as an alter ego.
I have great difficulty cooking; my husband cooks, I have
no appetite (1).
My husband has to take many calls as some days I am
totally unable to speak and not everybody can understand my words (6).
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Health promotion and empowerment of individuals living with head and neck cancer
Being enabled by means of contact with and a
passion for the environment
The text showed a strong passion for or devotion to the
environment; the participants became absorbed in doing
certain things over and over again, which created positive
feelings, pleasure and happiness. In order to be beneficial,
the activity or hobby had to be suitable for their condition
and ability. When involved in such activities they experienced increased physical strength, less fatigue and reduced
psychological stress, which encouraged them to look to the
future. Two sub-themes emerged: ‘‘Nature’’ and ‘‘Hobbies
and activities’’.
Nature
Nature could be a garden, forest, lakes, their own windowsill with plants or fresh air, rain, snow and sun. The
participants stated that nature was a source of healing
energy that gave them the power to recover both physically
and mentally.
Nature and fresh air, it means a lot y also mentally
because the demons don’t like the outdoors (1).
Fishing is wonderful and it’s lovely to be in the woods y
days with brilliant sunshine and beautiful colours it
makes you feel so happy y yes nature has a healing
power (2).
Hobbies and activities
Hobbies included crafts based on wood, silver, steel, leather
and fabric as well as crossword puzzles or working at the
computer. The participants took pleasure in giving away
homemade gifts, as it created feelings of contentment, joy
and confirmation. Hobbies and activities minimised the
effect of daily demands as well as increasing both bodily and
mental energy and helped them to continue the process of
achieving their goals. Many of the participants had lost a
great deal of weight and muscularity and mentioned a desire
to build up their body again.
I listen to a lot of music on the radio or on the CD-player
and just sit down at the piano and play y it’s good (2).
I actually exercise a great deal y because I didn’t have a
single muscle left in my bodyyI notice that it makes a
difference y it really does (8).
Discussion
This study aimed to shed light on health promotion from the
perspective of individuals living with head and neck cancer.
The participants in the present study found individual ways
of promoting health that have not previously been reported
in head and neck cancer research. The main theme was
understood as an ongoing process of interplay between
internal and external enabling, leading to the ability to
regain control and empower oneself. Seedhouse (2002)
claims that enabling is essential for the promotion of health
and can be both internal and external. In the present study,
31
internal enabling became visible when the individual made
contact with his/her inner strength, while external enabling
was provided by family, friends and the environment.
The present findings indicating transformed and improved
self-esteem and increased self-determination are interpreted as a personal growth that originates from the process
of growing self-empowerment. This ongoing process of
finding ways to promote health was different and could be
hampered by fatigue and to some extent by earlier negative
life experiences. Rappaport (1984) stresses that empowerment looks different and needs to be defined by the people
concerned. It was common that the participants put up
barriers and priorities for conserving strength and this is in
line with Tedeschi and Calhoun (2004) research. Still more
research is needed in order to find out if and how social
barriers have a long-term impact on the health of individuals
and families.
It is difficult to gauge an individual’s reaction to being
told that he/she has head and neck cancer, but it is clear
that surgery in this area can be an extremely existential and
traumatic event, e.g., when the voice box is removed, to
say nothing of living with a hole in one’s neck.
It was obvious that head and neck cancer and its
treatment shaped the participants’ actions of finding ways
to promote health. The motivation for doing this was
associated with existence and finding meaning of living
according to one’s own beliefs and values. This study
highlights the fact that the participants regarded their life
as more precious than before and that they found it easier to
recognise and embrace existentiality; to seize the day; exist
and be present in the here and now. This is in accordance
with Sawatzky and Pesut’s (2005) findings and therefore
more attention ought to be brought to research in the
spiritual realm in order to understand the patient’s reality
and the meaning of living with head and neck cancer.
The empowerment process means a bottom-up instead of
the usual top down approach (Brülde and Tengland, 2003)
and our study strongly emphasises the fact that the
participants were motivated to promote their own health
and therefore took action and successfully stopped smoking.
Consequently, Sharp and Tishelman (2005) research ought to
be developed, to help the nurse provide support and
encouragement when the individual is ready and motivated
to stop smoking. This bottom-up approach could also be
seen when the individuals in this present study found ways of
promoting health when using diaries, listening to audio
tapes or looking at photographs as a means of working all the
way through their illness-related experiences. Sharp et al.
(2004) recommend the use of care diaries in standard care
for patients with head and neck cancer in order to enhance
patient involvement, family education and communication.
By using these two approaches this care could be developed
together as a guide to assist the individual’s empowerment
process (Bjorklund and Fridlund, 1999). These findings are in
line with Bulsara et al. (2004) research that has shown the
importance of supporting the individual’s own empowerment strategies.
Positive thinking seems to be crucial and was the most
common ongoing process of promoting one’s own health, it
shaped a good felling inside and exerted influence over
power and control. Research has shown that mental training
promotes individuals’ self-concept and self-image and
ARTICLE IN PRESS
32
facilitates and reduces muscle stiffness and anxiety (Bundzen et al., 2002). Furthermore, it seems important to
support these individuals’ own strategies for creating a
balance among mental, emotional, spiritual, and physical
health (Kinney et al., 2003).
This present study showed feelings of well-being when
drinking a glass of wine for relaxation. Allison’s (2002)
research confirmed this, that using (as opposed to abusing)
wine during recovery can lead to better physical and role
functioning, less fatigue, a reduction in pain as well as
minimising the experience of dry mouth, swallowing
problems and feelings of illness.
The present study shows that emotional support from
family and friends provided comfort and confirmation as
well as a feeling of hope and believe in the future. These
external enablers made it possible for the participants to
maintain their personalities and roles within the families,
despite their changed appearance. This created feelings of
power and facilitated the empowerment process; they knew
that the family always were obtainable when needed. The
research of Mok et al. (2002) showed a need to facilitate the
families’ empowerment process and found that a fundamental element was to build up a trusting relationship to
health care personnel, which resulted in feelings that
they were not abandoned or left alone in caring for their
loved ones.
The findings of the present study demonstrate the healing
power of nature. The link between nature, health and
healing has been known for over 9000 years and has been
confirmed by research from geriatric care (Ottosson and
Grahn, 2005), in-patient care (Ulrich, 1984) and rehabilitation (Ottosson, 1997). Maller et al. (2005) claim that nature
can be seen as an under-utilised public resource in terms of
human health and well-being, with the use of parks and
natural areas offering a potential gold mine for inhabitants’
health promotion. Consequently, there is a need for health
personnel to work towards providing a healthy environment
for their patients, such as views of and contact with parks
and green spaces.
The present study highlighted the relationship between
the promotion of health and cultural activities, which
finding could be developed in head and neck cancer care
in order to facilitate the patient’s recovery in the same way
as in the area of breast cancer (Oster et al., 2006). Listening
to and playing music was also beneficial and relaxing. This is
in line with Siedliecki and Good (2006) research claiming
that music could promote a feeling of power, enhance the
effects of analgesics and decrease pain, depression and
disability.
Methodological issues
A qualitative latent content analysis was chosen (Berg,
2004; Burnard, 1995) in order to describe and interpret the
statements made by persons living with head and neck
cancer on the subject of what promotes health in everyday
life. Polkinghorne (2006) claims that researchers themselves
serve as data gathering and analytic instruments in
qualitative studies, therefore the data in the present study
was analysed and interpreted with the help of Berg’s, (2004)
and Burnard’s (1995) guiding principles.
M. Björklund et al.
Findings from a study of this kind need to be evaluated in
terms of trustworthiness: credibility, dependability, confirmability and transferability (Lincoln and Guba, 1985).
Credibility was assured by presenting views from both sexes
and by the purposive selection of participants that ensured
the inclusion of persons with different head and neck cancer
diagnoses, stages and treatments. The mean age of the
respondents was 63/65 (men/women), and may indicate a
possible failure to capture the experiences of younger and
older persons. One further limitation was that persons who
were unable to communicate because of cognitive disability
were excluded. All participants had speech problems due to
the tumour site or treatment and therefore the researcher
allowed ample time to create an atmosphere of trust and
understanding. The interviewer informed the participants
about her experience and familiarity with the context
(Lincoln and Guba, 1985) and the participants spoke openly
about sensitive and existential matters. The interviewer
reformulated questions when necessary in order to achieve a
mutual understanding of the essence of the questions and
responses as well as to avoid misunderstandings and the risk
of the respondents answering in a way they thought might
please her. There were no apologies when spitting, coughing
or clearing the throat during the interview, which could
indicate that the participants felt safe.
Dependability was assured by the fact that the same
researcher (MB) carried out all interviews and transcriptions. The whole text was conscientiously analysed and the
clearly defined analysis steps described above were followed. The use of a tape recorder and verbatim transcripts
as well as referring back to and rereading the transcripts
during the analysis process allowed the researcher to remain
close to the content of the interviews and ensured
trustworthy and dependable interpretations. Further, the
citations make it possible to assured confirmability; though
the readers could act as a co-examiner. Transferability can
be considered if persons with different cancer diagnoses or
other serious diseases can recognise the descriptions and
interpretations as their own.
Conclusions and clinical implications
This study has provided not only new knowledge and
understanding of what promotes health for the individual
living with head and neck cancer. Additionally, new knowledge and understanding about the empowerment process
and the interplay of internal and external enabling that
helps the individuals to take control and power over
themselves and the illness. This empowerment process
varies and depends on acting and doing within the
individual. The individual is expert on his/her experiences
and this knowledge is crucial if health personnel want to
focus on care that facilitates strength for the individuals to
endure head and neck cancer. Empowerment is the goal of
health promotion and there is a need to use both the
individuals’ and the health professionals’ knowledge to
identify individual strategies for continuing the empowerment process. Clinical implications could be mental and
physical training, self-care and support groups for the
individual and family. Further research of what promotes
health in persons with other categories of cancer could
ARTICLE IN PRESS
Health promotion and empowerment of individuals living with head and neck cancer
provide health personnel more insight into health promotion
and the empowerment process.
Acknowledgements
This study was supported by the department of Health
Sciences, Kristianstad University and The Nordic School of
Public Health, Gothenburg. We are most grateful to the
participants for taking an active interest in the study and
to Gullvi Nilsson and Monique Federsel, for revising the
language.
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IV
O R I G I N A L A R T I C LE
doi: 10.1111/j.1752-9824.2010.01042.x
Living with head and neck cancer: a profile of captivity
Margereth Björklund
MSc, RN
Lecturer, PHD Student, School of Health and Society, Kristianstad University College, Kristianstad, Sweden and The Nordic
School of Public Health, Gothenburg, Sweden
Anneli Sarvimäki
PhD, RN
Associate Professor, Research Director, The Nordic School of Public Health, Gothenburg, Sweden and Age Institute, Helsinki,
Finland
Agneta Berg
MSc, PhD, RNT
Associate Professor, School of Health and Society, Kristianstad University College, Kristianstad, Sweden
Submitted for publication: 5 November 2009
Accepted for publication: 6 December 2009
Correspondence:
Ms Margereth Björklund
Lokvägen 49
S-260 33 Påarp
Sweden
Telephone: +46 42 22 87 68,
+46 70 27 633 18
E-mail: [email protected]
22
B J Ö
O R K L U N D M , S A R V I M Ä
AKI A & BERG A
(2 0 1 0 )
Journal of Nursing and
Healthcare of Chronic Illness 2, 22–31
Living with head and neck cancer: a profile of captivity
Aim. To illuminate what it means to live with head and neck cancer.
Background. Patients could experience head and neck cancer as more emotionally
traumatic than other cancers because of visible disfigurement and its life-threatening
impact on vital functions. This long-term illness often leads to lifestyle changes such
as to physical function, work and everyday tasks, interpersonal relationships and
social functioning.
Design. This study used a qualitative and explorative longitudinal and prospective
design with semi-structured interviews and open-ended questions. Twenty-one
interviews were conducted with six participants with newly diagnosed or newly
recurrent head and neck cancer. The analysis was descriptive and interpretive.
Findings. The participants were living ‘in captivity’ in the sense that their symptoms
were constant reminders of the disease. Our findings also revealed existential
loneliness and spiritual growth, as interpreted within six themes: altered sense of
affiliation; hostage of health care; locked up in a broken body, but with a free spirit;
confined in a rogue body, forced dependency on others, and caught up in a permanent illness trajectory.
Conclusions. Living with head and neck cancer involves emotional and existential
vulnerability. The participants and their next of kin experienced insufficient support
from health services and inadequate coordination between phases of their lengthy
illness trajectory. These findings call for changes in oncological rehabilitation and
management. Patient care must take a holistic view of everyone involved, centring
on the individual and the promotion of health. A care coordinator could navigate
between the individual patient needs and appropriate health services, hopefully with
results that lessen the individual’s emotional and existential confinement.
2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd
Original article
Living with HNC
Key words: coordinator, everyday living, head and neck cancer, health promotion,
management, qualitative descriptive and interpretive analysis
Introduction
Head and neck cancer (HNC) has a profound and long-term
impact on an individual’s physical and psychosocial functioning since it involves changes in eating, swallowing,
speaking, breathing, and appearance (Ledeboer et al. 2005).
Psychosocial consequences of these changes include anxiety,
uncertainty, and hopelessness (Anderson & Franke 2002).
Since HNC tumours often cause visible disfigurement,
patients could experience this type of cancer as more
emotionally traumatic than other cancer diagnoses (Millsopp
et al. 2006). During social encounters with others, many
people often feel unsure how to behave and could feel
embarrassed when meeting with individuals who are visibly
different (Rumsey et al. 2004). In turn the affected individual
could experience the staring, comments and questions as
intrusions and react with social anxiety and behavioural
avoidance (ibid.). Rogers et al. (2008) confirms the excessive
impact of HNC on health-related quality of life. Living with
HNC is associated with great psychological agony, and
depressed moods are often present throughout the entire
illness trajectory (Haisfield-Wolfe et al. 2009). Further,
Griffiths et al. (2008) highlight the emotional vulnerability
of recurrence.
Managing the intrusion in daily life following HNC
treatment could mean multifaceted lifestyle changes and
challenges in physical function, work, everyday tasks, interpersonal relationships, and social function (Semple et al.
2008). According to Larsson et al. (2003), eating-related
problems during radiotherapy for HNC are complex and
emerge from a specific context.
Speech problems following surgery in the head and neck
region could be experienced as complex and frustrating
(Happ et al. 2004). Ideally, as Feber (2000) proposes, means
of communication should be worked out in advance to
prevent unnecessary frustration. Pen and paper or a ‘Magic
Slate’ should be provided, and assistance from a speech
therapist could improve patient care (Rodriguez & VanCott
2005).
Feber (2000) states that HNC has enormous psychosocial
consequences for patients and their next of kin, changing the
life situation for the family as an entity. Since each individual
reacts differently, it is important to deepen our understanding
of what it means to live with this complex and lifethreatening chronic illness.
Aim
This study aims to illuminate what it means to live with head
and neck cancer.
Design
A longitudinal, prospective study, extending over one year
and including repeated narrative interviews, i.e. the entire
illness trajectory could be explored since some patients with
this diagnosis are cured, or treatment is completed after one
year (Anniko 2006). A qualitative design with open-ended
questions was used as this approach provided the opportunity
to address complex, contextual, constructed, and subjective
realities (Lincoln & Guba 1985). Table 1 identifies when and
where the 21 interviews were conducted.
Participants
Participants were purposively selected with assistance from
the medical and nursing staff involved in their care. Selection
criteria were: men and women above 18 years of age, newly
Table 1 Overview of repeated interviews (n = 21), when and where they were performed with the participants (n = 6) after information about
initial HNC diagnosis or recurrence
Participant
Interview 1
Interview 2
Interview 3
Interview 4
Ms
Mr
Ms
Mr
Mr
Mr
30 days
7 days*
14 days*
14 days*
21 days
14 days
3
4
3
3
3
3
8 months*
Cancelled
7 months*
Cancelled
7 months*
7 months
1 year*
Cancelled
1 year*
1 year*
1 year*
1 year*
A newly diagnosed 60+
B recurrence (5 months after diagnosis) 80+
C recurrence (9 months after diagnosis) 55+
D newly diagnosed 45+
E newly diagnosed 65+
F newly diagnosed 60+
months*
months
months*
months*
months
months
*Interviewed at home.
Interviewed in hospital.
2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd
23
M Björklund et al.
diagnosed and treated for different forms of HNC, and able
to speak and understand Swedish. During the planning phase,
two individuals with newly diagnosed recurrence heard about
our study and asked to participate. They were included
because the additional information they could provide would
help fulfil the purpose of the study. Six individuals (four men
and two women) aged 40+ to 80+ years of age participated in
the study. All participants presented with lymphatic gland
metastases, and four of the six presented with recurrence near
the original tumour site.
Context
The interview study was conducted in Sweden from 2005
through 2007. All participants were receiving some form of
treatment, such as surgery, radiation therapy, or chemotherapy at the regional oncology centre or their local ear, nose,
and throat (ENT) clinic. Radiotherapy was often performed
twice a day, which could limit the options for ambulatory
treatment and require a stay of weeks or months in a patient
hotel or hospital ward.
Data collection
In conjunction with a clinical visit, a contact nurse gave
potential participants a letter describing the study and its
purpose. If patients gave their oral informed consent to
participate the nurse immediately contacted the first author
(MB). This author telephoned the individual, who chose a
suitable time and place for the initial interview. The two
participants with recurrence who asked to participate in the
study received a posted letter from the first author. An
interview guide was constructed and used to focus on what it
meant to live with HNC (Table 2). The questions were openended so the participant could talk freely about these topics
and could introduce new topics. Concurrently, the interviewer
(MB) collected socio-demographic data on age, children, and
marital status. In total, we conducted 21 interviews. The first
interview with each participant began with discretion, aiming
to inspire confidence and an atmosphere of trust.
The interviews were tape-recorded and lasted 50 to
75 minutes each, totalling 22 hours and 25 minutes of
interview time. The first author (MB) transcribed all interviews verbatim, yielding 442 pages (1Æ5 spacing).
The interviewer respected the participant’s physical and
psychological condition, and the interview was postponed,
discontinued, or temporarily stopped if the participant felt
too tired to continue. Non-verbal language such as sighing,
hoarseness, coughing attacks, clearing the throat, or spitting
were recorded in the transcript along with the interviewer’s
observations about facial expressions and body language, all
illustrating the researcher’s (MB) impression of the impact of
HNC on the unique participant. If specific care issues were
raised during the interview the researcher provided assistance
Questions
Probes
It is not long ago since you got the information about
your diagnosis/ recurrence; please tell me what this
illness means for you?
Please tell me about your everyday life from morning
until bedtime.
Has the illness affected your everyday life in some way,
and how?
Tell me about your thoughts and emotions. Do you
have a need to discuss your feelings or spiritual
questions with someone, and if so with whom?
In what way do you think life had been different
if you did not have this illness?
Tell me, what is your most demanding
challenge at this time?
What do you mean?
Table 2 Guide used for the semi-structured
interviews
Could you give some more
examples?
When that happened, how did
you feel?
What happened? Please tell
me more.
How do you feel? What did
you think about the
interview? Would you like to
add something?
The follow-up interviews started with a summing
up and discussion of the content of the last interview.
Following with two questions; (i) tell me how everyday
life has been since we last met; (ii) tell me about
your everyday life now from morning until bedtime.
24
2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd
Original article
Living with HNC
in contacting the appropriate health professional(s). Some
participants had next of kin to be present during the
interview (nine interviews). Comments from next of kin
were included only if participants asked them to fill in words
and gave a nod of approval.
Ethical considerations
The study was performed in compliance with the Helsinki
Declaration World Medical Association (WMA) (2004) and a
University Ethics Committee. The chief physician at the
regional ENT centre approved the study. Written, informed
consent was obtained from participants before their first
interview. Information about the study was given in writing,
verbally, and reiterated. Participants were further informed
about the voluntary nature of participation and the opportunity to withdraw from the study without any consequences
to their usual care.
Confidentiality was assured throughout data collection,
analysis, and presentation by the researchers removing any
individual identifiers from the data and by securing all data in
a locked cabinet that only the research team could access. If
next of kin were present during the interview, they were also
informed about confidentiality.
Data analysis
A qualitative, interpretative and descriptive analysis was used
(Thorne et al. 1997) with the aim to understand and generate
an interpretative description of patient experiences as
revealed by responses to certain questions to disclose what
it is like to have a certain disease, or what it means to
experience certain bodily or psychosocial inconveniences. It is
based on a rigorous analytic process to advance the initial
descriptive claims towards abstracted interpretations and will
illuminate, in a new and meaningful manner, what it means
to live with HNC (Thorne et al. 2004). Thorne et al. (1997)
highlights the use of field notes that record the context of all
data-gathering episodes and link those contexts to the
phenomena under study. Further, they affirm that repeated
interviewing is built into the design of an interpretive
description; then the initial conceptualisations can be challenged or refined (Thorne et al. 1997).
All authors were experienced in qualitative research. To
guide the interpretation process, they drew on that experience
along with their professional experience as trained nurses in
HNC, geriatrics, psychiatric care, and psychotherapy.
The data analysis proceeded as follows:
1 Since the impressions from the interviews were that the
individuals had unique ideas about what it meant to live
2
3
4
5
6
7
with HNC, the first and the third author read each participant’s interview independently with intention of fostering reflections and a broad understanding of the text.
Concerning the physical sphere, all participants described
consequences regarding eating, swallowing, and breathing.
However, their experiences were widely disparate when
considering what it meant for the unique individual over
the 1-year period.
The first author (MB) re-read, analysed, and coded each
participant’s whole text separately, one interview at a time.
The author’s notations and questions focused on what it
meant for that unique participant to live with HNC.
The initial codes were critically examined with questions,
e.g. what was said, what happened, what does/could it
mean for this person?
By shifting between the codes and the unique participant’s
whole text, the process of understanding evolved from the
surface to a deeper level of interpretation. This was a
search to uncover patterns in the text, and sub-themes were
interpreted from each interview.
After repeated reading of the unique participant’s complete
transcripts, the sub-themes were further analysed, but now
looking for changes over time and what it meant individually to live with HNC. The sub-themes were carefully
considered, and then one theme was interpreted for the
complete transcripts of each unique participant.
All authors continually discussed the analysis and interpretations. The same analytic procedure was used for each
participant. Moreover, the interpretations were regularly
discussed in seminars with nursing researchers.
The final stage involved a discussion to interpret a main
theme that could be associated with having HNC, for
example, what it could mean for every unique participant.
Table 3 presents examples of the analytic procedure.
Findings
The findings indicated that living in captivity was the main
theme for everyday life with HNC. Since the illness
reminded the individual of its presence 24 hours a day, it
was interpreted to be physically, emotionally, socially, and
existentially confining. Participants’ descriptions revealed
some similarities, e.g. changes in eating, mood, and social,
economic, and spiritual issues. However, when interpreting
the changes during the individuals’ year with the illness, i.e.
their sense of what it meant for them personally, their
experiences were complex and not comparable. Hence, the
findings will be presented as interpretations of six distinctive individuals’ experiences: Mr and Ms A, B, C, D, E,
and F.
2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd
25
M Björklund et al.
Table 3 The analytical procedure
Statement
Code
Sub-theme
Theme
Main
theme
My tumour seems like an octopus with a lot of hard claws that spread
the cancer throughout my body.
What would it look like … neck cancer and smoking, oh no … I see all
those affected by the same, they’re thin and pale, and some in the
prime of life … they should be out having fun, but we barely have
strength to walk.
I didn’t have the strength and couldn’t eat, but we decided to have
guests anyway … I was lying in the next room and heard them eating
and laughing and thought about how he had set the table and put out
table napkins.
I’ve reassessed life and got another chance … my aunt prays for me
each night and says that she knows I will recover, and that feels so
good … I need to be around a few more years for the children’s sake.
(Ms A)
Imaging the
cancer growing
Living in the land
of sick people
Trapped in a
alien body
Taking actions to
explore new life
conditions
Altered sense
of affiliation
Living in
captivity
Feelings of
being out
Isolation and
changed
relationship
Incorporate new
values
Spiritual
confidence and
faith
Table 4 A summary of individual theme and sub- themes
Ms A
Mr B
Ms C
Mr D
Mr E
Mr F
Altered sense of
affiliation*
Hostage of health
care*
Confined in a rogue
body*
Forced dependency
on others*
Trapped in a alien
body
Feelings of being
disregarded in
treatment
decisions
Feelings of being a
guinea pig
Locked up in a
broken body, but
with a free spirit*
Feelings of
existential
disequilibrium
Being afraid of
choking during
sleep
Living on a
rollercoaster
Caught in a
permanent illness
trajectory*
Confidence in health
care
Perceived rejection
by next of kin
Necessity of a
restrictive living
Cancelled
Self-induced
isolation
Cancelled
Death as transition
Preparing for own
death and next of
kin’s security
Cancelled
Being left at the
mercy of health
care professionals
Living in a
compromised
state
Reconciliation with
the illness
Taking actions to
explore new life
conditions
Isolation and
changed
relationship
Spiritual confidence
and faith
Threatened by legal
proceedings
Lack of accessibility
and continuity in
health care
Financial problems
and cancer are a
family affair
*Theme.
Sub-theme.
First, we describe our interpretation of the individuals’
illness trajectory, using six individual themes. Second, we
present socio-demographic data and the first author’s (MB)
description of her visual and auditory impression of the
interviewee. Third, all sub-themes are interpreted, described,
and exemplified by quotations. Table 4 summarises the
individual themes and sub-themes.
Ms A: Altered sense of affiliation
The overall impression of Ms A’s illness trajectory was that the
illness impact forced her into revaluing life and renewed her
26
appreciation of what was essential in life. The text revealed an
emotional, mental, and religious transition. It was understood
that Ms A felt she was a captive of her malformed body,
especially regarding social interaction, because of her
disfigured face and being met by stares or avoidance.
Ms A was 60+ years of age and received disability pension.
She was cohabiting, had children and grandchildren, and was
interested in next of kin, nature, fashion, and cosmetics.
Visible were affected skin, radiation fields marked out on Ms
A’s face, and a shrunken mouth with no teeth. Throughout
the first interview she spoke in a weak, hoarse voice and was
clearing her throat, coughing, and spitting.
2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd
Original article
The first interview revealed embarrassment from a shameful and repugnant sense of living in a stranger’s sick body.
Sub-theme: trapped in an alien body:
It’s disgusting, I feel dirty... the worst thing I can think of are old men
that spit, and now I look like one of them... and the phlegm just boils
up in me (shakes head and retches). No, it’s not feminine.
The second interview revealed that Ms A had reconciled with
her changed self-image and life situation. It was understood
that Ms A felt uncomfortable being dependent on tube
feeding and felt a greater need to meet ‘soul mates’. Subtheme: taking actions to explore new life conditions:
I felt halfway dead when I got a stomach tube, since that’s just for
people in long-term care... but I need it of course… I like to visit the
throat cancer society... we eat together in silence, and some cough
and spit, but what difference does that make? We’re all in the same
situation.
The third interview revealed changes in the distribution of
domestic work and uneasiness in hovering between feeling
near and distant to her husband. Sub-theme: isolation and
changed relationship:
Living with HNC
tumours emerging from a surgical scar and irradiated skin on
his left cheek.
The first interview revealed feelings of distress, a sense of
being left out of care decisions, and that health professional
had an attitude of superiority. Sub-theme: feelings of being
disregarded in treatment decisions:
I was called to a meeting, but I wasn’t allowed to join in... and then
one of them said ‘we should cut here’ and the other one said ‘deliver
radiation there’... I didn’t have any confidence in anyone.
Before the final interview Mr B had been hospitalised for two
months. Visible was an altered appearance with the left side
of his face paralysed and covered by a large bandage. During
the interview Mr B had difficulty articulating, and mucus was
oozing from his mouth. Mr B seemed to feel that he had been
taken hostage by health services and ongoing treatment. The
text revealed a sense of powerlessness, being forced to
surrender to health and social services. Sub-theme: feelings of
being a guinea pig:
It’s not healing, it’s just too much (hits table) I need to rest, and I’m
old... I feel like a guinea pig, and partly they agree since I’m unique
and they’re trying out things as they go// I want to go home, but I
I feel so alone since I’m the only one who has to find the will to go
can’t since I need help, and I’m not allowed to move to the nursing
on… he’s taking over everything at home, just as if I were dying, and I
home near my loved ones since I’m not from that municipality (deep
feel left out… when I’m standing and washing dishes he hugs me and
sigh). It’s the politicians who govern health care and nobody else.
kisses me on the neck... that’s enough since I feel his comfort and
nearness, but sex is something that totally disappeared after my
illness.
The last interview was interpreted to mean that Ms A had
redefined her new life conditions and existence. Sub-theme:
spiritual confidence and faith:
I light candles in church, and now I pray every night for my loved
ones, and I’ve started to practice relaxation... I retreat into myself and
shut off my brain. I’ve never been able to do that before (coughs)… I
thank my Heavenly Father that I’m alive and can have a positive
outlook on life.
Mr B: Hostage of health care
The overall impression of Mr B’s illness trajectory was that
his severe illness and treatment distorted his everyday life.
Mr B appeared to lack confidence and met by disrespect
from health professionals. This interfered with his selfgoverning life, and he ended up with health care governing
his life.
Mr B was 80+ years of age and a pensioner. He lived alone,
had children and grandchildren, and was interested in nature
and next of kin. Visible was an elderly man with three large
Ms C: Locked up in a broken body, but with a free spirit
The overall impression of Ms C’s illness trajectory was a
long-lasting fight against the illness that had broken down her
body. Ms C revealed vast life experiences from her many
years of living in different cultural contexts. She believed
strongly in re-incarnation, was not afraid of dying, and felt
that everything that happened in life has a meaning.
Ms C was 55+ years of age and unemployed. She was
married, had one child, and was interested in cooking, next of
kin, and contact with friends. Visible was a swollen face with
surgical scars and radiation-affected skin on the right side of
her cheek and neck.
The first interview revealed that Ms C believed that her
oral cancer and its recurrence was a manifestation of her total
life situation, linked to distress and poor health. Sub-theme:
feelings of existential disequilibrium:
I think that cancer lies dormant in everyone... for me it started after
becoming unemployed... it’s not my disease that affects me most,
it’s being unemployed.
The next interview revealed that Ms C’s bodily problems
had grown, impacting on intimacy, relationship with next of
2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd
27
M Björklund et al.
kin, and social life. Sub-theme: perceived rejection by next
of kin:
My husband is really thoughtful, but he finds it difficult to touch me,
and I feel that’s a big minus (clears throat, drinks). Both he and our son
have been affected more by my disease than I’ve been, and we never go
to restaurants anymore since they think it’s hard to see that I can’t eat.
The third interview revealed experiences indicating that the
illness was occupying Ms C’s entire life. She appeared to be
taking time for self-reflection and conciliation, including a
change in priorities to care for herself first. This resulted in
withdrawal from social activities. Sub-theme: self-induced
isolation:
I’m more tired, and don’t think that I want more... I do a lot of things
for myself now without having a guilty conscience… my mother is
living with us now. She feels good about that, and it’s needed now
that I’m feeling worse.
when I feel like it. My wife does most of the work... I don’t even have
the energy to vacuum (sigh)… we haven’t gone out, or been in a large
group because it’s better for us here at home.
The third and final interview was conducted one year after
diagnosis since Mr D experienced recurrence. Visible was a
thin, bald-headed, haggard man with tumours growing from
the paretic left side of his face and mucus oozing from his
mouth.
The text revealed transformed everyday life with existential
and financial worries. Sub-theme: preparing for own death
and next of kin’s security:
I often wonder why I’ve been afflicted with this (drinks, clears throat,
coffee runs from the of corner of his mouth)// I don’t want to be in
hospital, but it’s difficult to be at home alone since my wife has to
work for financial reasons… we got married, and that gives all of us a
sense of security now that I’ve become so sick.
The last interview was interpreted to mean that Ms C felt
harmony in spiritual thinking and reconciled with death.
Ms C had a strong conviction and reliance in the idea that
this life is simply another lesson to learn from. Sub-theme:
death as transition:
I’m not afraid of dying, I’ve lived my life being constantly aware, and
I think you need experiences to reach perfection... it can take many
lifetimes before you reach that point, and therefore I will come back
as a human.
Mr D: Confined in a rogue body
The overall impression of Mr D’s illness trajectory was that it
confined life and changed his existence from an active young
man who loved walking the dog to a tired man lying in bed
within a rogue body.
Mr D was 45+ years of age and employed. He was
cohabiting, had one child, and was interested in next of kin,
nature, his dog, TV and reading. Visible was a large, fairhaired man with swollen and red-spotted skin on the left side
of his face. During the first interview Mr D was clearing his
throat and coughing, and his voice was thick and hoarse.
The first interview revealed worry stemming from problems of dyspnoea, pain, and feelings of disgust. Sub-theme:
being afraid of choking during sleep:
The whole time I feel like something’s there... it’s uncomfortable since I
wake at night unable to breathe... I’m scared and hardly dare to sleep.
A second interview revealed that Mr D had minimised social
contacts, was striving for peace of mind, and felt safe at home
with next of kin. Sub-theme: necessity of restrictive living:
28
I’m tired (big yawn), but it doesn’t bother me since I can lie down
Mr E: Forced dependency on others
The overall impression of Mr E’s illness trajectory was that he
felt trapped in a social net, needing help due to difficulties in
eating and speaking. It was understood that he experienced
difficulty in accepting help.
Mr E was 65+ years of age. He was married, a pensioner,
had children and grandchildren, and was interested in nature
and listening to radio. Visible was a thin, pale man, marked
by sickness, with a shrunken mouth and missing teeth.
The first interview revealed feelings of fearing death, and
Mr E seemed to be oscillating between hope and despair.
Sub-theme: living on a rollercoaster:
It’s like I’m living on a rollercoaster... at times I think everything will
work out... and later I think it’s hell to have to cut up half my face.
The next interview revealed frightening experiences and a
fear of dying when a tracheal tube impaired his ability to
make himself understood. Sub-theme: being left at the mercy
of health care professionals:
I rang the bell because I couldn’t cough up phlegm... he stood in the
door and said, ‘What do you want?’ My mouth and neck were
swollen shut, and I thought now I’m going to die... then he came and
said, ‘OK, should we suction you clean?’ So he did that, and then he
just left.
The third interview revealed that Mr E had become dependent on his wife since his hoarse, inaudible voice and eating
problems had altered their relationship. It was understood
that Mr E’s lack of autonomy made him feel vulnerable;
2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd
Original article
resulting in a depreciated sense of how other people saw him.
Sub-theme: living in a compromised state:
I answer only when I know who it is, since I feel that people look
down on me when they don’t know me. Oh they probably think
I’m not sober... when I can’t get out a sound my wife has to call
for me… my wife coaxes and dishes up food all the time, it’s
difficult.
The last interview was interpreted to mean that Mr E now
accepted doing what he could and valued his life and selfimage positively. Sub-theme: reconciliation with the illness:
Now my wife has learnt that I eat when I can… I’m tired, but I can
read the newspaper, listen to the radio, cut the grass, and be
outdoors, and am healthy up here (points to head). I see now
everything from its best view.
Mr F: Caught in a permanent illness trajectory
The overall impression of Mr F’s illness trajectory was that his
attitude shifted from trust to distrust in health service. It was
understood that his illness was life-threatening and lengthy
because of its impact on vital functions, day and night,
including bleeding (mouth), choking sensation, and pain.
These problems drained Mr F’s strength, and he seemed burnt
out.
Mr F was 60+ years of age. He was married, employed,
had one child and grandchildren, and was interested in next
of kin, nature, computer and crosswords. Visible was a
physically healthy-looking man with a gentle face and
appearance.
The first interview revealed that Mr F had great confidence
in health care, but the hospital environment seemed foreign.
Sub-theme: confidence in health care:
I’ve got a lot of confidence in health services and have turned over
responsibility to those who know best… we see a lot of bad things
here, it’s terrible... someone is cut over the ear and around the neck
and down, and someone is missing half a nose... so then I think that
mine is nothing, and I hope that they fix it.
The next interview revealed that Mr F was furious after
receiving a provocative letter from his employer who
showed no individualised consideration. Mr F revealed
feelings of being pursued. Sub-theme: threatened by legal
proceedings:
I got a threatening letter from my job, and I’m so angry... I’m
supposed to let them know immediately, otherwise I won’t get any
sickness compensation... wonder if they’ve even read the doctor’s
confirmation... I’ve wasted a lot of unnecessary energy on this that
I could have used to heal my body instead.
Living with HNC
The third interview revealed more bodily problems, and Mr F
had feelings of being abandoned by health care, although the
side-effects of treatment were at their peak with hoarseness,
breathlessness, bleeding, eating problems, faintness, and
fatigue. Mr F felt insecure due to slow response from the
hospital and primary care. Sub-theme: lack of accessibility
and continuity in health care:
Some days are just crap, and there’s no improvement. And things
happen all the time, like when I bleed or choke and it’s sometimes so
hard to get air…you can’t get hold of anyone... last time it took a
week before the doctor called back.
The last interview was interpreted to mean that the illness
required adaptability on different levels, and that Mr F had
less confidence in health care. It seemed he was not
believed about having a severe toothache, and the longterm illness caused financial trouble. Motivation for living
included good support and relationships from next of kin.
Sub-theme: financial problems and cancer are a family
affair:
This year felt really long (sigh). I’ve gone week in and week out
without getting better… toothache is severe, but you can’t see
anything on the x-ray… I’ve got a feeling that he thinks I’m lying…
bills are many and costly since I now get only half my salary …
without my wife and family I’d have given up.
Discussion
This study aims to illuminate what it means to live with
newly diagnosed or newly recurrent HNC. The main theme,
living in captivity, was interpreted as feelings of being
captive, day and night, in a human prison. All participants
were unique, and the findings suggested captivity by; altered
sense of affiliation, a broken and rogue body, dependence on
others and health services, and a permanent illness trajectory.
The findings indicate that participants felt alone in their
illness. This corresponds to Trillin’s (1981) research suggesting that having cancer is like entering ‘the land of sick people’
where those from ‘the land of the well’ could visit, but could
always leave. Our findings highlight the importance of
meeting soul mates, and Birkhaug et al. (2002) showed an
association between active membership in patient organisations and improved quality of life. Perhaps this type of forum
could ease loneliness and isolation and be valuable to
recommend.
The findings draw attention to the unique bodily impact
of HNC that meant captivity in a forever-changed everyday
life, seemingly followed by existential changes and spiritual
growth. Clearly, the six participants had different life
2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd
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M Björklund et al.
perspectives, but all were aware of HNC’s severity and
mortality. Some found strength through meditating and
praying, suggesting a role for complementary and alternative medicine (CAM). People with HNC often use spiritual
therapies, herbs and vitamins, physical therapies, and body/
mind therapies (Molassiotis et al. 2006). In HNC care there
appears to be value in discussing CAM openly and giving
appropriate advice to those who wish to combine CAM
with the medical treatment.
This study revealed that dependence on next of kin and
changed roles at home contributed to a sense of captivity, and
the illness could change the emotional and sexual relationship
of couples. Since HNC and its treatment can produce phlegm,
dry mouth, mouth odour, and the need to spit and clear the
throat, this could be unpleasant for both parties and
discourage intimacy. Gamba et al. (1992) found that persons
with advanced disfigurement report decreased sexual activity
compared with less disfigured people. However, another
study concluded that sexuality was not a problematic domain
for persons with former HNC (Rapoport et al. 1993). Penner
(2009) reported that the profound functional and visible
changes caused by HNC and its treatment could raise
psychosocial impact on the individual and next of kin, thus
a need for support also to next of kin (Wright & Leahey
2005).
The findings reflect the long-term problems of HNC, with
distress, pain, and economic hardship during lengthy treatment. Adell et al. (2008) report that less than 50% of
former HNC patients could be helped for these side effects
of treatment. It took more than two years to restore
dentition, and some could never be rehabilitated. The
findings indicated feelings of abandonment from health care
after treatment and are in line with earlier research
(Björklund et al. 2009). Supportive clinics need to be
encouraged to meet practical and emotional needs (Larsson
et al. 2007). Since HNC is both life-threatening and longlasting these supportive clinics might be insufficient to meet
long-term needs. Perhaps a new type of management that
values empowering the patient and humanising care must be
developed (Björklund et al. 2008). Fillion et al. (2006)
recommend an oncology-patient navigator to coordinate
treatment and promote continuity of care. This management
strategy should address the patients’ multitude of needs
rather than a single urgent need generated by a treatment
and/or its side effects. Those needs are particularly apparent
since the individuals face many stressors related to the
severity of their condition, together with body image
concerns, speech problems, and respiratory and nutritional
challenges, which often impact on self value and relationships to others. Continuous contact also facilitated the
30
creation of a therapeutic nurse–patient relationship that
could make it easier for patients to express their problems
and concerns. This strategy of ensuring that patient interests
and concerns are in forefront has been proven to play an
important role in continuity and supportive care throughout cancer treatment, recovery, or cancer progression
and death (Fillion et al. 2009). Yet, in the process of
changing HNC management, individuals must have ongoing
support. This is best provided through round-the-clock
access to the nearest ENT clinic. Also, health professionals
may need to raise their voices more often and involve policy
makers.
Strengths and limitations
This study comprised 21 interviews with six participants with
newly diagnosed or newly recurrent head and neck cancer.
While those interviews were open, reflective and provided
valuable descriptions, the study had limitations. However,
generalisability was not the aim of this study, and we
accepted the limitations of having so few participants. The
potential lies instead in the likelihood of achieving greater
depth of analysis and in generating hypotheses and new
research questions.
Conclusion
Our findings show that having HNC could mean living in
captivity since the illness impacts the individual 24 hours a
day. HNC is a life-threatening, long-term illness. Hence,
these individuals and their next of kin need support
throughout the entire trajectory of illness.
Understanding patients’ experiences of living in captivity
from HNC is important if health professionals wish to
improve care. The findings call for a healthcare coordinator
who could follow the individual and his/her next of kin from
diagnosis to the end of the care trajectory. This type of
management, focusing on individualised care and health
promotion, empowers the patient and humanises care. HNC
is life-threatening, so as its management changes it is
important for individuals to have access around the clock
to the nearest ENT clinic.
Acknowledgements
We are grateful to the participants for generously sharing
their experiences and to Ron Gustafson for revising the
English manuscript. This study was supported by Kristianstad University College and the Nordic School of Public
Health Gothenburg.
2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd
Original article
Contributions
Study design: MB, AB, AS; data collection: MB; data analysis
and manuscript preparation: MB, AB, AS.
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Förteckning över NHV-rapporter
1983
1983:1
Hälsa för alla i Norden år 2000. Föredrag presenterade på en konferens vid
Nordiska hälsovårdshögskolan 7–10 september 1982.
1983:2
Methods and Experience in Planning for Family Health – Report from a seminar.
Harald Heijbel & Lennart Köhler (eds).
1983:3
Accident Prevention – Report from a seminar. Ragnar Berfenstam & Lennart
Köhler (eds).
1983:4
Självmord i Stockholm – en epidemiologisk studie av 686 konsekutiva fall.
Thomas Hjortsjö. Avhandling. 1984
1984
1984:1
Långvarigt sjuka barn – sjukvårdens effekter på barn och familj. Andersson,
Harwe, Hellberg & Syréhn. (FoU-rapport/shstf:14). Distribueras av
Studentlitteratur, Box 141, SE-221 01 Lund.
1984:2
Intersectoral Action for Health – Report from an International Workshop. Lennart
Köhler & John Martin (eds).
1984:3
Barns hälsotillstånd i Norden. Gunborg Jakobsson & Lennart Köhler. Distribueras
av Studentlitteratur, Box 141, SE-221 01 Lund. 1985
1985
1985:1
Hälsa för äldre i Norden år 2000. Mårten Lagergren (red).
1985:2
Socialt stöd åt handikappade barn i Norden. Mats Eriksson & Lennart Köhler.
Distribueras av Allmänna Barnhuset, Box 26006, SE-100 41 Stockholm.
1985:3
Promotion of Mental Health. Per-Olof Brogren.
1985:4
Training Health Workers for Primary Health Care. John Martin (ed).
1985:5
Inequalities in Health and Health Care. Lennart Köhler & John Martin (eds). 1
1986
1986:1
Prevention i primärvården. Rapport från konferens. Harald Siem & Hans Wedel
(red). Distribueras av Studentlitteratur, Box 141, SE-221 01 Lund.
1986:2
Management of Primary Health Care. John Martin (ed).
1986:3
Health Implications of Family Breakdown. Lennart Köhler, Bengt Lindström, Keith
Barnard & Houda Itani.
1986:4
Epidemiologi i tandvården. Dorthe Holst & Jostein Rise (red). Distribueras av
Tandläkarförlaget, Box 5843, SE-102 48 Stockholm.
1986:5
Training Course in Social Pediatrics. Part I. Lennart Köhler & Nick Spencer (eds).
Förteckning över NHV-rapporter
1987
1987:1
Children's Health and Well-being in the Nordic Countries. Lennart Köhler &
Gunborg Jakobsson. Ingår i serien Clinics in Developmental Medicine, No 98 och
distribueras av Blackwell Scientific Publications Ltd, Oxford. ISBN (UK) 0 632
01797X.
1987:2
Traffic and Children's Health. Lennart Köhler & Hugh Jackson (eds).
1987:3
Methods and Experience in Planning for Health. Essential Drugs. Frants
Staugård (ed).
1987:4
Traditional midwives. Sandra Anderson & Frants Staugård.
1987:5
Nordiska hälsovårdshögskolan. En historik inför invigningen av lokalerna på Nya
Varvet i Göteborg den 29 augusti 1987. Lennart Köhler (red).
1987:6
Equity and Intersectoral Action for Health. Keith Barnard, Anna Ritsatakis & PerGunnar Svensson.
1987:7
In the Right Direction. Health Promotion Learning Programmes. Keith Barnard
(ed). 1988
1988
1988:1
Infant Mortality – the Swedish Experience. Lennart Köhler.
1988:2
Familjen i välfärdsstaten. En undersökning av levnadsförhållanden och deras
fördelning bland barnfamiljer i Finland och övriga nordiska länder. Gunborg
Jakobsson. Avhandling.
1988:3
Aids i Norden. Birgit Westphal Christensen, Allan Krasnik, Jakob Bjørner & Bo
Eriksson.
1988:4
Methods and Experience in Planning for Health – the Role of Health Systems
Research. Frants Staugård (ed).
1988:5
Training Course in Social Pediatrics. Part II. Perinatal and neonatal period. Bengt
Lindström & Nick Spencer (eds).
1988:6
Äldretandvård. Jostein Rise & Dorthe Holst (red). Distribueras av
Tandläkarförlaget, Box 5843, SE-102 48 Stockholm. 1
1989
1989:1
Rights, Roles and Responsibilities. A view on Youth and Health from the Nordic
countries. Keith Barnard.
1989:2
Folkhälsovetenskap. Ett nordiskt perspektiv. Lennart Köhler (red).
1989:3
Training Course in Social Pediatrics. Part III. Pre-School Period. Bengt Lindström
& Nick Spencer (eds).
Förteckning över NHV-rapporter
1989:4
Traditional Medicine in Botswana. Traditional Medicinal Plants. Inga Hedberg &
Frants Staugård.
1989:5
Forsknings- och utvecklingsverksamhet vid Nordiska hälsovårdshögskolan.
Rapport till Nordiska Socialpolitiska kommittén.
1989:6
Omstridda mödrar. En studie av mödrar som förtecknats som
förståndshandikappade. Evy Kollberg. Avhandling.
1989:7
Traditional Medicine in a transitional society. Botswana moving towards the year
2000. Frants Staugård.
1989:8
Rapport fra Den 2. Nordiske Konferanse om Helseopplysning. Bergen 4–7 juni
1989. Svein Hindal, Kjell Haug, Leif Edvard Aarø & Carl-Gunnar Eriksson.
1990
1990:1
Barn och barnfamiljer i Norden. En studie av välfärd, hälsa och livskvalitet.
Lennart Köhler (red). Distribueras av Studentlitteratur, Box 141, SE-221 01 Lund.
1990:2
Barn och barnfamiljer i Norden. Teknisk del. Lennart Köhler (red).
1990:3
Methods and Experience in Planning for Health. The Role of Women in Health
Development. Frants Staugård (ed).
1990:4
Coffee and Coronary Heart Disease, Special Emphasis on the Coffee – Blood
Lipids Relationship. Dag S. Thelle & Gerrit van der Stegen (eds).
1991
1991:1
Barns hälsa i Sverige. Kunskapsunderlag till 1991 års Folkhälsorapport. Gunborg
Jakobsson & Lennart Köhler. Distribueras av Fritzes, Box 16356, SE-103 27
Stockholm (Allmänna Förlaget).
1991:2
Health Policy Assessment – Proceedings of an International Workshop in
Göteborg, Sweden, February 26 – March 1, 1990. Carl-Gunnar Eriksson (ed).
Distributed by Almqvist & Wiksell International, Box 638, SE-101 28 Stockholm.
1991:3
Children's health in Sweden. Lennart Köhler & Gunborg Jakobsson. Distributed
by Fritzes, Box 16356, SE-103 27 Stockholm (Allmänna Förlaget).
1991:4
Poliklinikker og dagkururgi. Virksomhetsbeskrivelse for ambulent helsetjeneste.
Monrad Aas.
1991:5
Growth and Social Conditions. Height and weight of Stockholm schoolchildren in
a public health context. Lars Cernerud. Avhandling.
1991:6
Aids in a caring society – practice and policy. Birgit Westphal Victor. Avhandling
1991:7
Resultat, kvalitet, valfrihet. Nordisk hälsopolitik på 90-talet. Mats Brommels (red).
Distribueras av nomesko, Sejrøgade 11, DK-2100 København.
Förteckning över NHV-rapporter
1992
1992:1
Forskning om psykiatrisk vårdorganisation – ett nordiskt komparativt perspektiv.
Mats Brommels, Lars-Olof Ljungberg & Claes-Göran Westin (red). sou 1992:4.
Distribueras av Fritzes, Box 16356, SE-103 27 Stockholm (Allmänna förlaget).
1992:2
Hepatitis virus and human immunodeficiency virus infection in dental care:
occupational risk versus patient care. Flemming Scheutz. Avhandling.
1992:3
Att leda vård – utveckling i nordiskt perspektiv. Inga-Maja Rydholm. Distribueras
av shstf-material, Box 49023, SE-100 28 Stockholm.
1992:4
Aktion mot alkohol och narkotika 1989–1991. Utvärderingsrapport. Athena. Ulla
Marklund.
1992:5
Abortion from cultural, social and individual aspects. A comparative study, Italy –
Sweden. Marianne Bengtsson Agostino. Avhandling.
1993
1993:1
Kronisk syke og funksjonshemmede barn. Mot en bedre fremtid? Arvid Heiberg
(red). Distribueras av Tano Forlag, Stortorget 10, NO-0155 Oslo.
1993:2
3 Nordiske Konference om Sundhedsfremme i Aalborg 13 – 16 september 1992.
Carl-Gunnar Eriksson (red).
1993:3
Reumatikernas situation i Norden. Kartläggning och rapport från en konferens på
Nordiska hälsovårdshögskolan 9 – 10 november 1992. Bjarne Jansson & Dag S.
Thelle (red).
1993:4
Peace, Health and Development. A Nobel seminar held in Göteborg, Sweden,
December 5, 1991. Jointly organized by the Nordic School of Public Health and
the University of Göteborg with financial support from SAREC. Lennart Köhler &
Lars-Åke Hansson (eds).
1993:5
Hälsopolitiska jämlikhetsmål. Diskussionsunderlag utarbetat av WHOs
regionkontor för Europa i Köpenhamn. Göran Dahlgren & Margret Whitehead.
Distribueras gratis. 199
1994
1994:1
Innovation in Primary Health Care of Elderly People in Denmark. – Two Action
Research Projects. Lis Wagner. Avhandling.
1994:2
Psychological stress and coping in hospitalized chronically ill elderly. Mary
Kalfoss. Avhandling.
1994:3
The Essence of Existence. On the Quality of Life of Children in the Nordic
countries. Theory and Pracitice. Bengt Lindström. Avhandling. 19
Förteckning över NHV-rapporter
1995
1995:1
Psykiatrisk sykepleie i et folkehelseperspektiv. En studie av hvordan en holistiskeksistensiell psykiatrisk sykepleiemodell bidrar til folkehelsearbeid. Jan Kåre
Hummelvoll. Avhandling.
1995:2
Child Health in a Swedish City – Mortality and birth weight as indicators of health
and social inequality. Håkan Elmén. Avhandling.
1995:3
Forebyggende arbeid for eldre – om screening, funn, kostnader og opplevd verdi.
Grethe Johansen. Avhandling.
1995:4
Clinical Nursing Supervision in Health Care. Elisabeth Severinsson. Avhandling.
1995:5
Prioriteringsarbete inom hälso- och sjukvården i Sverige och i andra länder.
Stefan Holmström & Johan Calltorp. Spri 1995. Distribueras av Spris förlag, Box
70487, SE-107 26 Stockholm. 1996
1996
1996:1
Socialt stöd, livskontroll och hälsa. Raili Peltonen. Socialpolitiska institutionen,
Åbo Akademi, Åbo, 1996.
1996:2
Recurrent Pains – A Public Health Concern in School – Age Children. An
Investigation of Headache, Stomach Pain and Back Pain. Gudrún Kristjánsdóttir.
Avhandling.
1996:3
AIDS and the Grassroots. Frants Staugård, David Pitt & Claudia Cabrera (red).
1996:4
Postgraduate public health training in the Nordic countries. Proceedings of
seminar held at The Nordic School of Public Health, Göteborg, January 11 – 12,
1996. 1997
1997
1997:1
Victims of Crime in a Public Health Perspective – some typologies and tentative
explanatory models (Brottsoffer i ett folkhälsoperspektiv – några typologier och
förklaringsmodeller). Barbro Renck. Avhandling. (Utges både på engelska och
svenska.)
1997:2
Kön och ohälsa. Rapport från seminarium på Nordiska hälsovårdshögskolan den
30 januari 1997. Gunilla Krantz (red).
1997:3
Edgar Borgenhammar – 65 år. Bengt Rosengren & Hans Wedel (red). 1998
1998
1998:1
Protection and Promotion of Children’s Health – experiences from the East and
the West. Yimin Wang & Lennart Köhler (eds).
1998:2
EU and Public Health. Future effects on policy, teaching and research. Lennart
Köhler & Keith Barnard (eds) 1998:3 Gender and Tuberculosis.
Vinod K. Diwan, Anna Thorson, Anna Winkvist (eds)
Förteckning över NHV-rapporter
Report from the workshop at the Nordic School of Public Health, May 24-26,
1998.
1999
1999:1
Tipping the Balance Towards Primary Healthcare Network. Proceedings of the
10th Anniversary Conference, 13-16 November 1997. Editor: Chris Buttanshaw.
1999:2
Health and Human Rights. Report from the European Conference held in
Strasbourg 15-16 mars 1999. Editor: Dr. med. Stefan Winter.
1999:3
Learning about health: The pupils' and the school health nurses' assessment of
the health dialogue. Ina Borup. DrPH-avhandling.
1999:4
The value of screening as an approach to cervical cancer control. A study based
on the Icelandic and Nordic experience through 1995. Kristjan Sigurdsson. DrPHavhandling.
2000
2000
2000:1
Konsekvenser av urininkontinens sett i et folkehelsevitenskapelig perspektiv. En
studie om livskvalitet hos kvinner og helsepersonells holdninger. Anne G
Vinsnes. DrPH-avhandling.
2000:2
A new public health in an old country. An EU-China conference in Wuhan, China,
October 25-29, 1998. Proceedings from the conference. Lennart Köhler (ed)
2000:3
Med gemenskap som grund - psykisk hälsa och ohälsa hos äldre människor och
psykiatrisjuksköterskans hälsofrämjande arbete. Birgitta Hedelin. DrPHavhandling.
2000:4
ASPHER Peer Review 1999. Review Team: Jacques Bury, ASPHER, Franco
Cavallo, Torino and Charles Normand, London.
2000:5
Det kan bli bättre. Rapport från en konferens om barns hälsa och välfärd i
Norden. 11-12 november 1999. Lennart Köhler. (red)
2000:6
Det är bra men kan bli bättre. En studie av barns hälsa och välfärd i de fem
nordiska länderna, från 1984 till 1996. Lennart Köhler, (red)
2000:7
Den svenska hälso- och sjukvårdens styrning och ledning – en delikat balansakt.
Lilian Axelsson. DrPH-avhandling.
2000:8
Health and well-being of children in the five Nordic countries in 1984 and 1996.
Leeni Berntsson. DrPH-avhandling.
2000:9
Health Impact Assessment: from theory to practice. Report on the Leo Kaprio
Workshop, Göteborg, 28 - 30 October 1999.
2001
2001:1
The Changing Public-Private Mix in Nordic Healthcare - An Analysis
John Øvretveit.
Förteckning över NHV-rapporter
2001:2
Hälsokonsekvensbedömningar – från teori till praktik. Rapport från ett
internationellt arbetsmöte på Nordiska hälsovårdshögskolan den 28-31 oktober
1999. Björn Olsson, (red)
2001:3
Children with asthma and their families. Coping, adjustment and quality of life.
Kjell Reichenberg. DrPH-avhandling.
2001:4
Studier av bruket av dextropropoxifen ur ett folkhälsoperspektiv. Påverkan av ett
regelverk. Ulf Jonasson. DrPH-avhandling.
2001:5
Protection – Prevention – Promotion. The development and future of Child Health
Services. Proceedings from a conference. Lennart Köhler, Gunnar Norvenius,
Jan Johansson, Göran Wennergren (eds).
2001:6
Ett pionjärarbete för ensamvargar
Enkät- och intervjuundersökning av nordiska folkhälsodoktorer examinerade vid
Nordiska hälsovårdshögskolan under åren 1987 – 2000.
Lillemor Hallberg (red).
2002
2002:1
Attitudes to prioritisation in health services. The views of citizens, patients, health
care politicians, personnel, and administrators. Per Rosén. DrPH-avhandling.
2002:2
Getting to cooperation: Conflict and conflict management in a Norwegian
hospital. Morten Skjørshammer. DrPH-avhandling.
2002:3
Annual Research Report 2001. Lillemor Hallberg (ed).
2002:4
Health sector reforms: What about Hospitals? Pär Eriksson, Ingvar Karlberg,
Vinod Diwan (ed).
2003
2003:1
Kvalitetsmåling i Sundhedsvæsenet.
Rapport fra Nordisk Ministerråds Arbejdsgruppe.
2003:3
NHV 50 år (Festboken)
2003:4
Pain, Coping and Well-Being in Children with Chronic Arthritis.
Christina Sällfors. DrPH-avhandling.
2003:5
A Grounded Theory of Dental Treatments and Oral Health Related Quality of Life.
Ulrika Trulsson. DrPH-avhandling.
2004
2004:1
Brimhealth: Baltic rim partnership for public health 1993-2003.
Susanna Bihari-Axelsson, Ina Borup, Eva Wimmerstedt (eds)
2004:2
Experienced quality of the intimate relationship in first-time parents – qualitative
and quantitative studies. Tone Ahlborg. DrPH-avhandling.
Förteckning över NHV-rapporter
2005
2005:1
Kärlek och Hälsa – Par-behandling i ett folkhälsoperspektiv.
Ann-Marie Lundblad. DrPH-avhandling.
2005:2
1990 - 2000:A Decade of Health Sector Reform in Developing Countries
- Why, and What Did we Learn?
Erik Blas. DrPH-avhandling
2005:3
Socio-economic Status and Health in Women
Population-based studies with emphasis on lifestyle and cardiovascular disease
Claudia Cabrera. DrPH-avhandling
2006
2006:1
"Säker Vård -patientskador, rapportering och prevention"
Synnöve Ödegård. DrPH-avhandling
2006:2
Interprofessional Collaboration in Residential Childcare
Elisabeth Willumsen. DrPH-avhandling
2006:3
Innkomst-CTG: En vurdering av testens prediktive verdier, reliabilitet og
effekt. Betydning for jordmødre i deres daglige arbeide
Ellen Blix. DrPH-avhandling
2007
2007:1
Health reforms in Estonia - acceptability, satisfaction and impact
Kaja Pôlluste. DrPH-avhandling
2007:2
Creating Integrated Health Care
Bengt Åhgren. DrPH-avhandling
2007:3
Alkoholbruk i tilknyting til arbeid – Ein kvalitativ studie i eit folkehelsevitskapeleg
perspektiv
Hildegunn Sagvaag. DrPH-avhandling
2007:4
Public Health Aspects of Pharmaceutical Prescription Patterns – Exemplified by
Treatments for Prevention of Cardiovascular Disease
Louise Silwer. DrPH-avhandling
2007:5
Å fremme den eldre sykehuspasientens helse I lys av et folkehelse og holistiskeksistensiellt sykepleieperspektiv
Geir V Berg. DrPH-avhandling
2008
2008:1
Diabetes in children and adolescents from non-western immigrant families –
health education, support and collaboration
Lene Povlsen. DrPH-avhandling
Förteckning över NHV-rapporter
2008:2
Love that turns into terror: Intimate partner violence in Åland – nurses´
encounters with battered women in the context of a government-initiated policy
programme
Anette Häggblom. DrPH-avhandling
2008:3
Oral hälsa hos personer med kognitiva och/eller fysiska funktionsnedsättningar
– ett dolt folkhälsoproblem? Ulrika Hallberg, Gunilla Klingberg
2008:4
School health nursing – Perceiving, recording and improving schoolchildren´s
health
Eva K Clausson. DrPH-avhandling
2008:5
Helbredsrelateret livskvalitet efter apopleksi. Validering og anvendelse af
SSQOL-DK, et diagnosespecifikt instrument til måling af helbredsrelateret
livskvalitet blandt danske apopleksipatienter
Ingrid Muus. DrPH-avhandling
2008:6
Social integration for people with mental health problems: experiences,
perspectives and practical changes
Arild Granerud. DrPH-avhandling
2008:7
Between death as escape and the dream of life. Psychosocial dimensions of
health in young men living with substance abuse and suicidal behaviour
Stian Biong. DrPH-avhandling
2009
2009:1
Ut ur ensamheten. Hälsa och liv för kvinnor som varit utsatta för sexuella
övergrepp i barndomen och som deltagit i självhjälpsgrupp
GullBritt Rahm. DrPH-avhandling
2009:2
Development of Interorganisational Integration – A Vocational
Rehabilitation Project
Ulla Wihlman. DrPH-avhandling
2009:3
Hälso- och sjukvårdens roll som informationskälla för hälsoläget i befolkningen
och uppföljning av dess folkhälsoinriktade insatser
Sirkka Elo. DrPH-avhandling
2009:4
Folkesundhed i børnehøjde - indikatorer for børns sundhed og velbefindende i
Grønland
Birgit Niclasen. DrPH-avhandling
2009:5
Folkhälsoforskning i fem nordiska länder - kartläggning och analys
Stefan Thorpenberg
2009:6
Ledarskap och medarbetarskap vid strukturella förändringar i hälso- och
sjukvården. Nyckelaktörers och medarbetares upplevelser
Agneta Kullén Engström. DrPH-avhandling
2009:7
Perspective of risk in childbirth, women’s expressed wishes for mode of delivery
and how they actually give birth
Tone Kringeland. DrPH-avhandling
Förteckning över NHV-rapporter
2009:8
Living with Juvenile Idiopathic Arthritis from childhood to adult life
An 18 year follow-up study from the perspective of young adults
Ingrid Landgraff Østlie. DrPH-avhandling
2009:9
Åldrande, hälsa, minoritet - äldre finlandssvenskar i Finland och Sverige
Gunilla Kulla. DrPH-avhandling
2010
2010:1
Att värdera vårdbehov - ett kliniskt dilemma. En studie av nyttjandet av
ambulanssjukvård i olika geografiska områden
Lena Marie Beillon. DrPH-avhandling
2010:2 R
Utvärdering av samverkansprojekt med remissgrupper och samverkansteam i
Norra Dalsland
2010:3 R
Utvärdering av verksamheten vid Enheten för Asyl- och flyktingfrågor,
Västra Götalandsregionen
2010:4 R
Utvärdering av försöksverksamhet med samverkansgrupper och coacher i
Vänersborg och Mellerud
2010:5 R
Utvärdering av projekt GEVALIS – Unga vuxna
2010:6 R
Utvärdering av Program Sexuell hälsa, Västra Götalandsregionen
2010:7
Perceptions of public health nursing practice - On borders and boundaries,
visibility and voice
Anne Clancy. DrPH-avhandling
2010:8
Living with head and neck cancer: a health promotion perspective – A
Qualitative Study
Margereth Björklund. DrPH-avhandling
Head and neck cancer (HNC) is a life-threatening and chronic illness. The
findings revealed that the patients’ inner strength and good relationships with
next of kin and contact with nature, hobbies, and activities could create a sense
of empowerment and experiences of better health and well-being. Consequently,
it is important to design pleasing health-care environments that include green
spaces and views to parks and encompass cultural activities such as art, music,
and access to libraries and cafés.
Health professionals’ views of mankind, roles, and behaviours could either
strengthen or weaken the patients’ health and well-being. Both health promoting
and not health promoting contacts and care were experienced.
Not every patient was strong enough to find health and well-being, some
patients felt vulnerable, isolated, and had feelings of being alone. They were
aware of the strained situation experienced by their next of kin in providing
needed emotional and practical support 24 hours a day. Health and social
services that better meet the needs of HNC patients ought to be developed
through the co-operation of patient organisations, health professionals, and
policy makers. The findings highlight the need for a salutogen perspective and
attentiveness in caring for HNC patients, especially for those who feel
vulnerable, dependent, and have lower self-esteem and autonomy.