School of Health Sciences, Jönköping University
Documentation in
Child and School Health Services
Mapping health information
from a biopsychosocial perspective using the ICF-CY
Ylva Ståhl
DISSERTATION SERIES NO. 29, 2012
JÖNKÖPING 2012
© Ylva Ståhl, 2012
Publisher: School of Health Sciences
Print: Intellecta Infolog
ISSN 1654-3602
ISBN 978-91-85835-28-7
“It is not the horse that pulls the trolley, it is the hay”
(unknown origin)
Abstract
The overall aim of this thesis was to analyze whether the documentation in the
Child Health Services (CHS) and School Health Services (SHS) reflects a
holistic view on health as represented by a bio-psychosocial perspective. The
method used based on four studies, all with a descriptive design. Analyzed
documents contained lists of health terms recommended to be included in the
health record (HR) (I), requested information in health questionnaires (II) and
the content of free text notes in health records (HRs) (III). A deductive
approach was used on an item-by-item basis (I, II), and for the free text notes
in HRs a qualitative content analysis with an inductive approach was chosen
(III). Nurses’ and physicians’ views on documentation and electronic HR were
analyzed with the help of a quantitative questionnaire design (IV).
Results showed that information on developed lists of health terms
recommended to be included in an electronic version of the HR (I) could be
linked to codes in the ICF-CY. The linked health terms were mainly focused on
the body, i.e. a biological perspective on health. Several health terms linked to
two or more codes, which indicate a need for more clarity in content
descriptions. In the locally produced health questionnaires (Study II), for all age
groups, a majority of the linked health items counted only once, and involved a
psychosocial perspective on health. These health items were related to
communication, psychosomatic symptoms and taking care of one’s health (II).
The results in the free text notes in HRs (III) mainly focused on a psychosocial
perspective on health and were represented across all age groups, but were
unevenly distributed. There was new health information in the free text notes
which had not been covered in the standardized part of the HRs. The
respective staffs acknowledged that more health information than was
documented in the HR was transferred between the CHS and SHS (IV). This
information concerned foremost family function. The CHS and SHS had
positive opinions regarding the possibilities of an electronic version of the HR.
Conclusions: The predominant medical content of lists of health terms was
supplemented with health information related to psychosocial health in health
questionnaires and in the free text notes in the HR. However, the focus was on
the child as a person rather than a child within a family and preschool/school
environment, and was strongly related to age groups. More information on
children’s health than was recorded was transferred between and within the
services. The utility of the ICF-CY as a tool has been confirmed, and indicates
challenges to develop a common language to document more on psychosocial
health.
Original papers
The thesis is based on the following studies, referred to in the text by their
Roman numerals.
Study I
Ståhl Y, Granlund M, Andersson Gäre B, Enskär K. Mapping of children's
health and development data on population level using the classification system
ICF-CY. Scandinavian Journal of Public Health. 2011 Feb;39(1):51-7. Epub 2010
Aug 5
Study II
Ståhl Y, Enskär K, Almborg A-H, Granlund M. Contents of Swedish school
health questionnaires
British Journal of School Nursing. 2011 Mar;6(2):82-88
Study III
Ståhl Y, Granlund M, Andersson Gäre B, Simeonsson RJ, Enskär K.
Psychosocial health information in free text notes of Swedish children's health
records. Submitted
Study IV
Ståhl Y, Granlund M, Andersson Gäre B, Enskär K. Views on health
information and perceptions of standardized electronic records among staff in
Child and School Health Services. Journal of Nursing Management. 2011 Mar;
19(2):201-8
The articles have been reprinted with the kind permission of the respective
journals.
Contents
Abstract ......................................................................................................5
Original papers ..........................................................................................7
Study I .........................................................................................................................7
Study II........................................................................................................................7
Study III ......................................................................................................................7
Study IV ......................................................................................................................7
Acknowledgements.................................................................................. 10
Abbreviations ........................................................................................... 13
Introduction ............................................................................................. 15
Background.............................................................................................. 16
Health ........................................................................................................................16
Perspectives on health........................................................................................16
Biopsychosocial perspectives on health ..........................................................17
Children’s health..................................................................................................18
Organizations and regulations ...............................................................................19
Health system in Sweden ...................................................................................19
Child Health Services .........................................................................................20
School Health Services.......................................................................................21
Health work in Child and School Health Services.........................................22
The documentation .................................................................................................24
Regulations for documentation ........................................................................24
Documents in the Child and School Health Services ...................................24
Quality of the documentation in the health record .......................................25
International Classification of Functioning, Disability and Health
Children & Youth version (ICF-CY) ...................................................................27
The ICF-CY - a standard framework ..............................................................27
The structure of the ICF-CY ............................................................................28
Limitations and critical comments ...................................................................30
Rationale for the thesis ............................................................................ 31
Aim........................................................................................................... 32
Method ..................................................................................................... 33
Design........................................................................................................................33
Participants: suppliers of materials (Studies I, II and III) ............................... 33
Data collection (Studies I, II and III).............................................................. 35
Data analysis (Studies I, II and III) ................................................................. 36
Linking data to the ICF-CY (Studies I, II and III)........................................... 38
Guidelines and rules for linking ....................................................................... 38
Linking process (Studies I, II) .......................................................................... 39
Participants (Study IV) ........................................................................................... 40
Data collection (Study IV) ................................................................................ 41
Data analysis (Study IV) .................................................................................... 41
Ethical considerations ............................................................................................ 41
Result....................................................................................................... 43
Content of health information in documentation ............................................. 43
Views on health information in documentation ................................................ 45
Views regarding an electronic version of the HR ......................................... 46
The utility of linking health data to ICF-CY ...................................................... 46
Discussion ............................................................................................... 49
Different perspectives on health and age differences ....................................... 49
Traditions and views influence the documentation .......................................... 52
The utility of the ICF-CY ...................................................................................... 55
Health variables related to the ICF-CY .......................................................... 55
Limitations of linking health data to the ICF-CY......................................... 57
Methodological discussion .................................................................................... 58
Validity and Reliability ....................................................................................... 58
Credibility, Dependability, Confirmability and Transferability ................... 60
Conclusions.............................................................................................................. 62
Clinical implications and continued research ..................................................... 63
Summary in Swedish/ Svensk sammanfattning ..................................... 64
Dokumentation i barn- och skolhälsovården kartläggning av hälsoinformation
från ett biopsykosocialt perspektiv med hjälp av ICF-CY............................................. 64
Kliniska implikationer och fortsatt forskning .................................................... 65
References ............................................................................................... 67
Acknowledgements
I would like to express my sincere gratitude to all people who have guided and
followed me during the last four years as a PhD student. Today I know that this
thesis had not been completed without your support. With special thanks to:
-
The participants; nurses and physicians in the child and school health
services in Kalmar, Jönköping and Östergötland counties. Without
contributing with your valuable working time by serving as suppliers of
material this thesis could not be performed.
-
Karin Enskär, my supervisor, Mats Granlund, my co-supervisor, Boel
Andersson Gäre, my co- supervisor. With you I have had regular
comprehensive and excellent supervision throughout these four years.
During the writing processes you shared your knowledge and wise
comments. You gave me the encouragement which I needed so well.
-
Rune J Simeonsson, my co-supervisor and co-author (Study III) for
sharing your knowledge concerning children’s development in relation
to the framework in the ICF-CY. I appreciate all you did for me and
your staff to make my semester as a visiting scholar at the University of
Chapel Hill in the North Carolina to such an interesting and
unforgettable time.
-
Ann-Helene Almborg, co-author (Study II) for your contribution in
the writing process and sharing your knowledge of the ICF-CY.
-
All PhD students and coordinators at the Research School of Health
and Welfare and the research environment CHILD at the University of
Jönköping, who gave me support, interesting discussions and good,
healthy laughs.
-
Lena Adamson, Margareta Adolfsson, Gunilla Brushammar, Marie
Bäckström-Andersson and Dorte Kjeldmand for your professional
contribution within different areas to improve my work.
-
Irene Zipper at the University of Chapel Hill who introduced me to
interesting environments and field work. Chris Harlan at Schooll of
Nursing who opened doors to public school visits and connections
10
with staffs and students. Susanne Nelson with whom I spent part of
my leisure time with and you also introduced me to local society.
-
Marie, Ingvar and Hasse for our “Wednesday evening dinners”.
Despite my fatigue these regular occasions cheered me up.
-
The “French Ladies” for our fellowship, sharing delicious food, wine
and language practice. Each third week have I arrived as a thirsty camel
coming to the oasis.
-
Lena, for support and for your invaluable advice.
-
My sister Elisabeth, good listener, who always been there when I
needed you.
-
Hasse, my life partner, without you this journey has been inoperable.
We did it together! You have been my main supporter and shared your
language knowledge with me. Besides, you have had a lot of patience
with me and I have not always been so easy to handle. Anyway, you
still stand by me and tomorrow is a new day!
-
Love and Maja - my jewels. Thanks for your participation in all I am
doing. From you I got a lot of energy. Sofia, the mother of my
grandchild Mika, thanks for bringing him to this world. It is so exciting
to get to know him. You are all the sunshine of my life!
My studies and research was supported and financed by; Eksjö municipality,
Futurum Jönköping County Council and the Swedish Association of Health
Professionals. The Transatlantic Consortium on Global Education and
Developmental Studies (GEDS) financed my four months scholarship at the
University at Chapel Hill, North Carolina, USA.
Eksjö,
Mars, 2012
Ylva Ståhl
11
12
Abbreviations
CHS = Child Health Service
HR = Health Record,
HRs = Health Records
ICD-10 = the International Classification of Diseases
ICF-CY = International Classification of Functioning, Disability and Health,
Children & Youth version
IS project = Information System project
SHS = School Health Service
WHO = World Health Organization
13
14
Introduction
From an international perspective, Swedish children’s health is very good.
However, declining psychosocial health and wellbeing are trends among
children and youth (Clausson, Köhler, & Berg, 2008b; Hjern, Alfven, &
Östberg, 2008; National Board of Health and Welfare, 2009b; Swedish National
Institute of Public Health, 2011c). Whether this is visible in the documentation
of children’s health in the Child Health Service (CHS) and the School Health
Service (SHS) is an open question. To achieve documentation that contains
both physical and psychosocial information of health, a bio-psychosocial
perspective on health needs to be applied.
As an experienced district nurse and a Master of Medical Science in Public
Health, my main professional experience comes from work as a school nurse
and as head of the SHS in one municipality. One of the main areas my
colleagues and I worked with concerned establishing which information on
children’s health should be documented and how to do so in a systematic and
structured way. The purpose was to use the documentation to ensure that the
best care possible was provided to the child and his/her family.
The present thesis began in 2008 and originated as part of a Swedish national
Information System (IS) project, Barnhälsodataprojektet (The Child Health Data
project). The IS project was initiated in 2006 by the Swedish Association of
Local Authorities and Regions as a response to demands from the professions
in the CHS and SHS. The services wanted help with national coordination in
the development of an agreed-upon model for electronic recordkeeping and
transfer of information. For the School of Health Sciences at Jönköping
University, the mission of the national IS project was to investigate whether
one of the World Health Organization’s (WHO’s) classification systems, the
International Classification of Functioning, Disability and Health – Children &
Youth version (ICF-CY), could be used as a framework for a common language
for the health information in the CHS and SHS. The purpose of the IS project
was to facilitate and ensure the precision, accuracy and safety of transferred
information within and between the CHS and SHS, as well as between different
data systems.
The intention of this thesis was to determine the content of health information
from a holistic view on health, i.e. a bio-psychosocial perspective, in different
documents used in the CHS and SHS. The ICF-CY was used as a tool to fulfill
this intent.
15
Background
Health
“The absence of disease may be a part of health, but health is more than the absence of
disease” (Blaxter, 2010, p. 19).
Perspectives on health
Health is a concept too complex to give a simple definition. From era to era,
and from culture to culture, the concepts of health and disease have been
assigned various meanings containing different dimensions. The development
of medical science has strongly influenced human thought about and opinions
on illness and disease. But it is not only physical and psychological status that
determines whether a disease is a disease. The views on health are influenced by
ruling values in society (Blaxter, 2010).
Rapid progress within medical science, together with technology development,
has led to great knowledge of the human body (Blaxter, 2010; Willman, 1996).
The pathogenic view i.e. the biomedical perspective on health in Western
countries is understanding health as the absence of disease and has its roots in
the Cartesian division between mind and body. This reductionist approach
considers health to be the absence of disease and illness, so to say the “healthy
are those who are not biologically disadvantaged” (Blaxter, 2010, p. 5) and this
assumption was developed and deepened by Boorse (1977). In his bio-statistical
theory, he defines health as “normal functioning, where the normality is
statistical and the functions biological” (Boorse, 1977, p. 542). Boorse’s theory
is widely accepted but has also been refuted, criticized and questioned (Khushf,
2007; Nordenfelt, 2007).
The humanistic view i.e. the psychosocial perspective on health, developed
from fields within the psychological and social sciences, sees health as a positive
state and a process experienced in daily life (Dahlberg & Segesten, 2010; Medin
& Alexandersson, 2000; Willman, 1996). There are different philosophical
views on and descriptions of the concept of health, such as a status, process,
function, wellbeing and quality of life (Blaxter, 2010; Tengland, 2007; Willman,
1996). Another view on health refers to a person’s ability to reach his/her goals
and feel happy (Nordenfelt, 1995). These different views all have in common
that they are derived from a holistic view on health, regarding the person as a
whole rather than a series of distinct bodily systems. Within the health sciences,
nursing science looks at the individual’s health and wellbeing, and functioning
16
in daily life. Internationally there are consensus concepts within nursing science,
one of which is health; thus, health is considered a goal (Alligood & Tomey,
2010). To understand an individual’s health, both biomedical and psychosocial
perspectives are needed. These perspectives are not mutually exclusive but
rather supplement each other (Dahlberg & Segesten, 2010; Willman, 1996).
Biopsychosocial perspectives on health
As early as 1948, a radical definition of health was proposed by the WHO. For
the first time, a holistic view on health was defined as three dimensions: “a state
of complete physical, mental and social wellbeing, and not merely the absence of disease and
infirmity” (World Health Organization, 1946, p. 2). This definition has never
been amended, but has been criticized because it is impossible to achieve an
absolute state of health and because health is part of wellbeing. There is no
single agreed-upon definition of the concept of health. It is indisputable that
the concept has been shaped over history. Health has come to be increasingly
described and accepted as an interaction between the person and his/her
environment; in other words health is both inside and outside the person
(Blaxter, 2010; Ogden, 2007). The definition of health by the WHO is further
developed into a broader concept in the policy document of the Ottawa
Charter for Health Promotion (World Health Organization, 1986).The
document describes health as a positive concept and emphasizes it as personal
and social resources as well as one’s physical capacity for everyday life, and calls
for care providers to promote health and prevent illness on a local level.
Promoting health is the process of enabling people to increase control over and
to improve their health (World Health Organization, 1986).
Engel (1977), a psychiatrist, argued for the need to look at illness with added
psychological and social dimensions instead of only from a biomedical
perspective. Health and illness is complex and need to be described from a
holistic viewpoint; consequently, Engel introduced a bio-psychosocial model
within the medical area. The model can be used as a philosophical model and
clinical guide to improve communication across scientific disciplines. Today,
the bio-psychosocial model enjoys broad acceptance within the health care
sector. It provides a complex, circular causality describing the individual and
his/her needs in relation to the existing context (Borrell-Carrio, Suchman, &
Epstein, 2004; Engel, 1978). From a systems theory perspective (von
Bertalanffy, 1969), views on health refer to a complex of interacting elements,
i.e. multiple causalities. Thus, mutual dependencies are noted, as well as
conditions and change (Wachs, 2000).
17
This thesis is based on a bio-psychosocial perspective on children’s health,
which includes the performance of activities contributing to functioning in daily
life and thus stresses the importance of including the child in its context.
Children’s health
From a global perspective, major health problems cause death among children.
However, the health of children in European countries is better than ever
before, although new health threats are emerging concerning their psychosocial
health (Barnekow & Muijen, 2009). The leading causes of death among children
under five years of age in the European Region are neonatal conditions and
infectious disease. Unintentional injuries such as traffic accidents, drowning and
poisoning are the leading cause of death among children aged five to19 years.
Children are also at risk of malnutrition, hazardous environments, obesity and
unhealthy lifestyles. Ample evidence shows that children living in poorer
circumstances are more likely to be at risk of unintentional injuries and physical
inactivity than are those from more affluent families. In industrialized countries,
children’s needs are moving from predominantly physical to psychosocial ones.
The WHO /Europe helps countries reform their health systems and focus
policy on social and economic determinants. One of the main tasks, along with
this policy focus, is to deliver effective care along a continuum. Children’s
health is influenced by the educational level of their caregivers, mainly that of
the mother (World Health Organization, 2011). Countries with more even
income distribution also have better public health than countries with
irregularly distributed resources. Children's health and life habits during their
maturation influence how their health will develop as they reach adulthood
(Fåhraeus et al., in press; Hayman et al., 2007).
The Convention on the Rights of the Child defines a child as every human
being under18 years (UN, 1989). There are approximately two million children
in Sweden, which corresponds to 22% of the population. A majority of children
have good psychosocial health, however, declining psychosocial health and
wellbeing as well as increasing psychosomatic symptoms are trends among
children and young people today (Clausson, et al, 2008b; Hjern, et al., 2008;
Johansson, Brunnberg, & Eriksson, 2007; Swedish National Institute of Public
Health, 2011b, 2011d). Psychosocial health and wellbeing among
schoolchildren worsen across the ages, and the most vulnerable are students
not living with their parents. Determinants of health are the family,
preschool/school situation and leisure time (Swedish National Institute of
Public Health, 2011b). In 2009 approximately 14% of students in Sweden
perceived that they had an impairment, which could include physical
impairments, dyslexia, visual and/or hearing impairments, ADHD, epilepsy or
diabetes (Swedish National Institute of Public Health, 2009). Allergies or
18
asthma constituted about half of the group of children with impairments.
Reading and writing disabilities are also among the most common disabilities.
Roughly one-fifth of all children in Sweden are overweight (Fåhraeus, et al., in
press; Lager, Fossum, Rörvall, & Bremberg, 2009; National Board of Health
and Welfare, 2009b). Children with one or more impairment more often
perceived lower life satisfaction, mental health problems and bullying compared
to children without impairments (National Board of Health and Welfare,
2009b; Nordhagen, Nielsen, Stigum, & Köhler, 2005).
Organizations and regulations
Health system in Sweden
The health system in Sweden is tax-financed and organized into municipalities
and county councils or regions. There is no hierarchical relationship between
them, as all have their own self-governing local authorities with responsibility
for different activities. On a national level, all professionals within health and
medical care are guided by the Health and Medical Services Act (SFS 1982:763).
Nurses and physicians have their own responsibility, to perform their work in
accordance with science and well proven experience (SFS 2010:659).
In Sweden, the CHS and SHS are given a mission from society to organize and
offer health surveillance and promotion for all children from birth through the
end of upper secondary school (until age ~18-22 years). The National Board of
Health and Welfare and the Swedish National Agency for Education (for the
SHS only) are the supervising bodies for both services. What is to be surveyed
and promoted is partly regulated by documentation. Nearly all children
participate in the services programs, and their health is documented. The health
service for young children, from birth to 6 years, is the responsibility of the
county council’s CHS. When a child is six years old and starts school, the
responsibility as well as the documentation is transferred to the SHS, which is
run by the municipality.
The services are continuously interacting with their environment. Internal and
external cooperation partners are involved in the services work with children’s
health in accordance with ruling laws and guidelines. According to the systems
theory there are distinction between open and closed systems. The CHS and
SHS are considered to be open systems, since they interact with their
environment. In these organizations this means a constant flow of information
in and out of the system. Sometimes, these flows create disturbances (von
Bertalanffy, 1969) and can partly be operationalized as form and content of
19
documentation. Questioned issues can open new perspectives which can
contribute the solving of problems.
In 2011, the National Board of Health and Welfare was given a mission from
the government to collaborate with staff within the interest organizations on
revising guidelines, recommendations and steering documents to provide equal
services in the entire country. The focus is on three main areas: psychosocial
health, developmental deviations in child functioning and somatic screening
(National Board of Health and Welfare, 2011).
Child Health Services
Employees on the main team in the CHS include nurses, physicians and
psychologists. The nurses specialize in pediatric care or primary health care, and
the physicians specialize in primary care or pediatrics. The Association for
pediatric nurses recommends a full-time working nurse not to have
responsibility for more than 60 newborns yearly. On the national level, the
general national program for the CHS was withdrawn at the beginning of 2009.
The motivation for this cancellation was that it was outdated and a revision is
underway (National Board of Health and Welfare, 2011; SOSFS 2008:35).
From a future perspective, the National Council for Medical Research argued
that to meet the needs in the CHS, efforts should be directed at strengthening
parents’ self-confidence, improving competence and increasing families’
participation in preventive activities. Priority should be given to children in
need of special support as well as their physical and social environment, and to
expanding the collaboration between caregivers (Håkansson & Sundelin, 2000).
Previous studies claim that the national guidelines ought to be more specific
concerning the performance of the service and that staff experience a gap
between policy and practice, creating difficulties when translating policy
recommendation into practice (Hagelin, Jackson, & Wikblad, 1998; Hallberg,
Lindbladh, Petersson, Rastam, & Håkansson, 2005; Magnusson, Lindfors, &
Tell, 2011).
At present the professionals in the CHS have their guidelines in a specific
national method book (Swedish Paediatric Society, 2010) with the purposes of
giving all professions the same knowledge-based information concerning what
is important for providing equal care. However, a recent study including all
child health care centers in Sweden showed a great disparity in the range,
methods and follow-up of the services provided, despite the description of the
CHS as a uniform and equal service across the country (Magnusson, et al.,
2011). The national method book is not a law or statute book, but rather a
practical guide that presents a basic program. Nearly all children in Sweden
aged 0-6 years participate in this basic program, in which the child’s health and
20
development are followed through different key ages. During a child’s first year
he/she is offered at least five development assessment visits, followed by the
rate of one visit a year. In addition to these assessments, the CHS also offers
growth checks, a vaccination program and parental support through the years.
All the health visits and check-ups with the child are recorded in the national
standardized HR, with one section for free text notes. Physicians are involved
in the meetings at some of the key ages, but to a lesser extent compared to
nurses.
School Health Services
Employees of the SHS are nurses and physicians. Requested nurse
competences correspond to specialization in pediatric care or primary care, and
it is recommended that physicians specialize in primary care, pediatrics or child
psychiatry. The association for school nurses refers to the law to ensure good
and safe care and recommend 400 students for a nurse working full time and
4,000 students for a school physician working full time (SFS 1982:763).
The nurses and physicians in the SHS are guided by the national guidelines
(National Board of Health and Welfare, 2004) and the Education Act (SFS
2010:800). Previously, the SHS was an independent service but since July 2011
it is organized and included in the School Health and Welfare Services.
According to the revised Education Act all students, in addition to the school
physician and nurse, have access to a psychologist, a counselor and pedagogical
competences in special education. All these professionals are included and
organized within the School Health and Welfare Services (SFS 2010:800), which
mainly work to promote health and prevent illness among students. The law
emphasizes that the gathered competences should support students in
achieving their education goals. This postulates a high degree of collaboration
between the professionals (SFS 2010:800). It is also crucial that the School
Health and Welfare Services collaborate with external authorities, such as Social
Service as well as Health and Medical Care. Students are offered at least four
health visits over their school years, three during comprehensive school and
one in upper secondary school. The planned health visits include check-ups,
e.g. of vision, hearing and growth, as well as health dialogues. Besides the
planned health visits, other limited tests and smaller interventions are
performed. The School Health and Welfare Services contribute to supporting
students’ work environment as well as the school’s value system and specific
responsibility for ensuring healthy and safe growth conditions (SFS 2010:800).
21
Health work in Child and School Health Services
“The health of the unity is the health of the community” F. Nightingale 1893
The activities of the care provided by the CHS and SHS are nursing-based,
albeit in collaboration with physicians; the nurses are the key actors. The health
work of nurses and physicians encompasses nursing, medicine and public
health work. The professionals work with promotion and prevention on an
individual level and with promotion, prevention and protection on a societal
level (National Board of Health and Welfare, 2004; Olander, 2003). Health
promotion belongs to the salutogenic perspective, i.e. strengthening the healthy
factors and being aware of people’s resources (Antonovsky, 1979; M. Eriksson
& Lindström, 2006; World Health Organization, 1986). Good care provided to
all individuals is the highest priority of the disciplines. Based on a humanistic
view, the focus of the health-promoting work is on the individual and on
understanding his/her world and its relation to health, illness and suffering,
instead of focusing on problems and diagnoses (Meleis, A.I. 2005). The
traditional perspective on health is the pathogenic view: signs of health
problems which lead to preventing disease. Examples of prevention work could
be: the work with passive smoking among children with smoking parents
(Carlsson, Johansson, Hermansson, & Andersson-Gäre, 2011) and health
education in school concerning e.g. responsible relationships to avoid substance
use and unplanned pregnancy. In addition to promotion and prevention work,
the public health work includes the concept of protection, e.g. from
environmental hazards.
Early child development is a determinant of health, wellbeing and learning skills
across the life course. It stresses the importance of the early detection of delays
and malfunctioning, which is one of the main missions of the CHS and SHS,
with the purpose of implementing early child interventions (National Board of
Health and Welfare, 2004; National Board of Health and Welfare, 2011). In
accordance with systems theory (Wachs, 2000), it is important to include
information about children’s abilities and skills, as well as their interaction with
peers and environmental factors such as the family and preschool/school
settings to detect malfunctioning. Successful early intervention requires the
collaboration and coordination of different services (Björck-Åkesson &
Granlund, 2005; Wachs, 2000). Contributions from each context have a
cumulative effect and increase the child’s social competences (U. Eriksson,
Hochwalder, Carlsund, & Sellström, 2011). Coordinated interventions within
the family, at preschool and at school are expected to have the best effects on a
child’s mental health (Bremberg, 2000; Lagerberg, Magnusson, & Sundelin,
2011; Stewart-Brown, 2008; Zimmermann, Eisemann, & Fleck, 2008).
22
In Sweden, the term for collaboration of a team is commonly called “crossprofessional” teamwork. However, this does not reveal how the teamwork is
organized or the degree of integration between the collaborating professions.
Collaboration between professionals can also be described through prefixes,
e.g. multi-, inter- or trans- professional. These express different degrees of
integration between the collaborating professions. Multi-professional
collaboration work indicates the lowest degree, e.g. sharing information with
each other; in inter-professional collaboration, as expressed by Thylefors
(2005), “the product is more than the simple sum of its parts” (p 104); and
finally, trans-professional collaboration can be described as an integrative work
process in which disciplinary boundaries are partly dissolved, i.e. the highest
degree (Thylefors, Persson, & Hellström, 2005). Nurses and physicians in the
CHS and SHS collaborate with several other professions, e.g. psychologists,
social workers, dieticians and teachers at preschool and school. One of the
important challenges of inter-professional teamwork is to take care of each
other’s competencies, and difficulties could include managing the individual
professional identities and the team processes (Kvarnström, 2008; Morberg,
Lagerström, & Dellve, in press).
The view on knowledge is an integrated and complex part of society, and is
expressed in different kinds of steering documents for professionals within
health and medical care. The rapid knowledge development demands that
clinicians have good knowledge. The Swedish Council on Technology
Assessment in Health Care (SBU) introduced the concept of evidence-based
health care, which has also been adopted by the National Board of Health and
Welfare as well as the Swedish Society of Nursing. Evidence-based health and
medical care is described as both an approach and a process. To link evidencebased research into practice demands efforts from the organization and
management levels and is also influenced by the culture in which the leader
operates. It requires e.g. basic skills in research methods (Wallin & Ehrenberg,
2004; Morberg, Lagerström, & Dellve, 2009). It is also the responsibility of the
professionals to independently search and stay up to date on new knowledge, as
well as to be active in developing a core of research-based professional
knowledge (International Council of Nurses, 2006). The prerequisites for
evidence-based practice among professionals are perceived as good, but require
both organizational and educational efforts (Heiwe et al., 2011; Sandström,
Borglin, Nilsson, & Willman, 2011). The CHS and SHS are responsible for
ensuring evidence-based care in accordance with science and well proven
experience. Besides the need for lifelong learning and time for critical reflection
among professionals, reliable documentation improves the prerequisites for the
development of evidence-based work in the CHS and SHS (Håkansson &
Sundelin, 2000; Morberg, et al., 2009; National Board of Health and Welfare,
2011).
23
The documentation
Documentation can be seen as a tool both for keeping people informed about
what has been done within an organization, and for steering what the
organization does or produces in a certain direction. In dynamic systems
theory, forces that pull or steer a system in a certain direction are called
attractors. The documentation requested in a service system can be seen as an
attractor. The information provided in documentation in service organizations
is supposed to affect services in the direction of their established goals. In
health services, the main purpose of documentation is to collect and
communicate relevant information in order to accomplish continuity and safety
in the care provided. The requested content should reflect what is relevant.
Another important purpose of documentation concerns the legal requirements
and obtaining the information necessary to steer the health care services in a
specific direction. Several factors besides the planned intentions and that are
not always visible, such as traditions and values, will also affect the content and
form of documentation (Schalock, 1994; Wachs, 2000).
Regulations for documentation
According to Swedish law, all health activities in the Health Care Services must
be recorded. Professionals are obligated to document in an individual health
record, primarily to ensure the safety and quality of the health care provided
(SFS 2008:355). The operation manager is responsible for ensuring that an
appropriate quality system is in place and for continuously guiding, following
up, developing and documenting the activities in the service (SFS 1982:763).
The documentation must be designed for use in the systematic quality work,
such as the further development of methods and routines as well as the followup of goals and results (SOSFS 2005:12). The routines for documentation
should ensure to the highest degree possible that the information is
documented with the aid of nationally established concepts and terms,
classifications and other code models (SFS 2008:355). All health care personnel
also fall under the Principal of Public Access to Official Records, which among
other things forbid the supplying of documentation without the consent of the
individual (SFS 2009:400).
Documents in the Child and School Health Services
The respective HRs in the CHS and SHS have undergone national
harmonization and standardization for many years. The national standardized
HR in the CHS originates from the beginning of the 1980s, and shortcomings
24
led to a revised version in 2000 (Hagelin, et al., 1998). The national
standardized HR in the SHS is from 1989 and was revised 2001, due to updated
growth data. In addition to the HR, the CHS uses national questionnaires to
screen children’s language development and mothers’ mental health (Lagerberg,
et al., 2011). In addition, various locally produced assessment questionnaires are
used by the CHS and SHS in health dialogues and to screen children’s health
and development (Golsäter, Sidenvall, Lingfors, & Enskär, 2011; Johansson &
Ehnfors, 2006; Reuterswärd & Lagerström, 2010). How the content and
outcomes of these health questionnaires are documented varies locally, and is
not clearly defined from a national legal point of view.
The HRs in both the CHS and SHS are divided into one standardized part and
one part for free text notes. The standardized part is structured with boxes,
columns and diagrams with specified areas. The requested information in these
areas relates to background variables, growth, vision and hearing, the screening
of developmental milestones performed at key ages (only CHS), issues within
health dialogues, parent support in group (only CHS), vaccination (only SHS),
health problems and health status. The continuity of the health work demands
that health information in the HR be transferred from the CHS to the SHS at
school start. Routinely in Sweden, after consent from caregivers, the health
record is transferred from the CHS to the SHS when the child starts school
(SFS 2009:400). After the individual’s final year of school, the record is
archived.
Quality of the documentation in the health record
The HR is an important tool for the documentation of an individual’s health. It
provides essential information for the communication among professionals
within and between health services. There are also requests from decisionmakers for aggregated data on local, regional and national levels concerning
children´s health. The rapid development of information management systems
and the transition to an electronic version of the HR have increased the
challenges, such as to improve interdisciplinary collaboration, exchange
information, ensure confidentiality and facilitate the evaluation of the care
provided (Anderson, 2005; Cowell, 2010; Green & Thomas, 2008; Hinman &
Davidson, 2009; International Council of Nurses, 2006). Nurses’ and
physicians’ views on the electronic version of the HR differ: nurses are more
positive to an electronic version (Krog, 2009; Weiner et al., 1999). They spend
more time handling patient information compared to any other professional
group. However, the electronic version of the HR demands that all professional
groups describe their contribution to the individual’s health and define the
information to document to provide the care. Developing an electronic version
of the HR demands new thinking and creativity and a relinquishment of interest
25
groups’ territorial thinking (Green & Thomas, 2008; Morberg, et al., 2009;
Ruland, 2002).
It is already known that Swedish documentation presents problems regarding
incomplete and ambiguous information, comprising both how and what is
documented as well as the extent of the documentation in relation to the
services provided (Ehrenberg & Ehnfors, 2001; Hagelin, et al., 1998; Hagelin,
Lagerberg, & Sundelin, 1991; Törnvall & Wilhelmsson, 2008). Information
concerning psychosocial issues among children is often missing in the
documentation (Clausson, Petersson, & Berg, 2003). Reasons for these
shortcomings are mainly organizational, such as lack of knowledge regarding
writing the documentation, lack of structured models and classification systems,
ethical issues and perceived waste of time (Clausson, et al., 2008a; Hagelin,
1999). Nursing documentation is utilized by physicians as a source of important
information, but studies confirm a lack of essential facts as well as a need for
greater clarity and additional information (Green & Thomas, 2008; Törnvall,
Wahren, & Wilhelmsson, 2007). The documentation requires that the language
used by the professionals be expressed without misconceptions and be more
structured to improve the quality of care (Björvell, Wredling, & ThorellEkstrand, 2003; Ehrenberg & Birgersson, 2003). Concepts such as construct,
validity and reliability are important for securing the quality of the information
gathered (Clausson, et al., 2003; Ehrenberg & Ehnfors, 2001; Hagelin, et al.,
1998; Hagelin, et al., 1991; Törnvall & Wilhelmsson, 2008). Access to
information is a prerequisite for knowledge development, and subsequently the
content of information has to mirror relevant perspectives on children’s health
(Hagelin, et al., 1998; Hörnfeldt, 2009).
The nurses and physicians in the CHS and SHS perform the documentation in
a coherent health record, which demands uniform terminology in order to be
clear and understandable to all users as well as the child and her family. The
ICF-CY provides a common language for multi-professional use within and
between different sectors (World Health Organization, 2007). The ICF-CY is in
Sweden mainly applied within interdisciplinary teams in habilitation services,
and is used in documentation to ensure all perspectives on health and
functioning (Adolfsson, Granlund, Björck-Åkesson, Ibragimova, & Pless, 2010;
Björck-Åkesson et al., 2010). In the present thesis the ICF-CY, as a tool for a
common language, will be investigated for its utility in profiling the content
regarding a biopsychosocial perspective in documentation in the CHS and SHS.
26
International Classification of Functioning, Disability
and Health – Children & Youth version (ICF-CY)
The ICF-CY reflects a systems theory perspective with a dynamic complex
relationship and interaction between the child’s health, development and
environment. It provides a coherent view on different perspectives on health
such as biological, psychological and social perspectives (World Health
Organization, 2007). The ICF-CY framework depicts essential concepts to
consider in the lives of all people and acknowledges health, functioning, life
quality and development as intertwined (McDougall, Wright, & Rosenbaum,
2010). The use of the framework in the ICF-CY emphasizes the child’s
functioning and enhanced participation in daily life (Simeonsson, 2009). The
ICF is a tool that can facilitates the decision regarding what to assess concerning
the child´s health but not how to do it (Allet, Bürge, & Monnin, 2008).
The ICF-CY - a standard framework
The ICF-CY is a universal health classification system and a standard
framework available for documenting children’s health, development and
wellbeing from birth through 17 years of age. It is a derived version of the
adult version, the ICF (2001), and includes all the content of the adult version
as well as additional content to cover development characteristics of children.
The child´s ongoing interaction with the environment, described in the
ecological model by Bronfenbrenner (Bronfenbrenner & Ceci, 1994), guided
the addition of content to the child version of the ICF (Simeonsson, Sauer-Lee,
Granlund, & Björck-Åkesson, 2010). The ICF-CY belongs to the family of
international classifications developed by the WHO, which also includes e.g.,
the International Classification of Diseases (ICD-10). When the ICF-CY
became available for worldwide use in 2007, it was anticipated to be broad
(Cieza, Bickenbach, & Chatterji, 2008). Its aim was to provide a unified,
standardized, common language and framework for the description of health
and health-related states, and it is purported to be useable across cultures
(World Health Organization, 2007). The ICF-CY is a taxonomy designed to
document the characteristics of developing children for multiple purposes, such
as use in program planning, surveillance and research, as well as the
documentation of intervention outcomes in any setting and country. It provides
a universal language and application for clinicians, educators, researchers,
administrators, policy-makers and parents to describe the functioning of all
children and youth in relation to their growth, health, wellbeing and
development (Simeonsson, 2009). The ICF-CY uses a bio-psychosocial
approach to health to capture different perspectives on children’s functioning,
whereby the bio stands for the child’s physical or bodily health and the
27
psychosocial for the individual and social perspectives on health (World Health
Organization, 2007).
Health professionals from different fields have looked at the framework of the
ICF-CY from different aspects of validity, e.g. the content perspective and its
relationship to other health-related concepts. The main results show that the
classification fulfills the formal criteria of exhaustiveness. There are ongoing
validations concerning the need for differentiated content, which today is
linked to the same category level (Cieza & Stucki, 2008). The ICF-CY can
advance evidence-based practice such as the provision of a basis for
differentiated assessment and support services on the basis of functioning
profiles. The ICF-CY, with its bio-psychosocial approaches, is meant to
supplement classifications such as the ICD-10 (World Health Organization,
2007).
The structure of the ICF-CY
The structure of the ICF-CY consists of a theoretical model and a classification
system. The ICF-CY model is based on a theoretical approach to health, and
provides a systemic perspective and a holistic view on describing functioning of
all children. It is an interactive model considering a complex relationship
between the child functioning in daily life, his/her health condition and
contextual factors. Children with the same diseases or disorders describe
different experiences of their functioning in everyday life situations. Hence,
descriptions of functioning are needed from different perspectives to get a
holistic view on health. For this purpose, the theoretical model of ICF-CY
illustrates the complex relationships between six dimensions. These dimensions
are I) the health condition in relation to II) bodily factors, i.e. Body Functions and
Body Structures, where “body” refers to the human body as a whole and
includes the brain’s function, i.e. the mind; III) Activity the execution of a task
or actions by the child; IV) Participation involvement in a life situation; and
contextual dimensions such as V) Environmental Factors and VI) Personal Factors.
28
Health Condition
Body Functions
and Structures
Participation
Activities
Environmental
Factors
Personal
Factors
Figure 1. The interactions between the components of the ICF
(WHO, 2007, p.17).
The Environmental Factors and Personal Factors belong to the complex context of
the child’s life and, as such, have an impact on his/her functioning. The
Environmental Factors consist of information on health within the individual, as
well as the societal and attitudinal environment. The sixth dimension in the
integrative model is Personal Factors, which provide the background on the child
such as age, gender and social status (World Health Organization, 2007).
Beyond the bio-psychosocial model the ICF-CY provides a classification,
built as a hierarchical system, from low to high level of detail, by organizing
information on health into four interacting components designated by letters:
Body Functions (b), Body Structures (s), Activities and Participation (d), and
Environmental Factors (e). Compared to the theoretical model the bodily factors
are divided into two parallel components, Body Functions and Body Structures.
Also, in the classification the dimensions of Activity and Participation are
merged into one component, Activities and Participation. The dimension of
personal factors is not at all included in the classification, due to the great social
and cultural variance across countries (World Health Organization, 2007).
The components are classified based on the ICF-CY categories, a total of 1,684
codes (Simeonsson, et al, 2010). The categories are organized within a
hierarchically nested structure with up to four different levels, and are denoted
by unique alphanumeric codes. By linking health data to the ICF-CY codes
within the components, it is possible to generate knowledge on how health data
can be used in profiling children’s health in terms of biological, individual
(psychological) and social perspectives on health in relation to everyday functioning.
Information on health within the Body Functions component includes, e.g., sleep
29
functions, height and emotions. Other examples of information on health that
belong to the anatomical part of the body such as teeth, fontanel and hip joint
are linked to the Body Structures. The Activities and Participation component
includes individual activities such as learning to read, write and calculate as well
as fine motor skills. It also includes the societal perspectives on functioning,
e.g., interacting with friends and playing together. Environmental Factors include
physical, social and attitudinal aspects. Each component is organized into a
number of chapters and different levels of categories where the health
information is described. It is recommended that certain guidelines and rules be
followed during the linking procedure (Cieza et al., 2005; World Health
Organization, 2007).
ICF-CY
Part 1
FUNCTIONING/
DISABILITY
Part 2
CONTEXT
Comp. 1
Comp. 2
Component 3
Component 4
BODY
FUNCTIONS
BODY
STRUCTURES
ACTIVITIES/
PARTICIPATION
ENVIRONMENTAL
FACTORS
1st level
8 chapters
8 chapters
9 chapters
5 chapters
2nd level
118 cat.
56 cat.
132 categories
74 categories
3rd level
351 cat.
166 cat.
394 categories
185 categories
4th level
54 cat.
99 cat.
17 categories
9 categories
Component
level
PERSONAL
FACTORS
Figure 2. The hierarchically nested structure of the WHO International
Classification of Functioning, Disability and Health, version for Children and
Youth (ICF-CY). Adapted from Adolfsson (2011).
Limitations and critical comments
The ICF-CY is limited by the exhaustive, complex, comprehensive original
volume of codes (WHO, 2007) and consequently time required to use it. This
argues for the necessity to develop more practice-friendly tools (Adolfsson, et
al., 2010; Ellingsen, 2011; Pless, Ibragimova, Adolfsson, Björck-Åkesson, &
Granlund, 2009). Further critical comments on the framework include
definitions of key constructs and concepts. Nordenfelt (2006) questions the
relevance of the ICF´s inclusion of too much health- related content and
30
suggests that some content within the Activities and Participation component lie
partly outside the proper domain of health (Nordenfelt, 2006). On the other
hand, several researchers claim that the Activities and Participation component
contains crucial constructs, but recommend the provision of more conceptual
clarification (Badley, 2008; Granlund et al., 2012; Whiteneck & Dijkers, 2009).
According to Granlund (2012), there is a lack of a subjective dimension of
functioning such as the individual’s own experiences of involvement
(Granlund, et al., 2012). Some critical comments regarding the Environmental
Factors component claim that the descriptions are on a too-low level of detail
(Whiteneck & Dijkers, 2009). There are also proposals that the ICF be
expanded to also include Personal Factors and a dimension of quality of life
(McDougall, et al., 2010).
Rationale for the thesis
Declining psychosocial health and wellbeing as well as increasing
psychosomatic symptoms are trends among Swedish children and young people
today (Barnekow & Muijen, 2009; Clausson, et al., 2008; Swedish National
Institute of Public Health, 2011d) but there is sparse research regarding the
content of documentation in the CHS and SHS in relation to these trends.
Previous studies have focused on structure and clarity of documentation, and
reveal deficiencies in the HRs that indicate that they contain incomplete and
ambiguous health information (Clausson, et al., 2003; Hagelin, et al., 1998).
When health information is transferred, this causes a potential health risk of
faulty assessment and endangers the correct evaluation of the care needed
(Ehrenberg & Ehnfors, 2001; Törnvall & Wilhelmsson, 2008). The services
have asked for help with national coordination in the development of an
agreed-upon model for electronic recordkeeping and transfer of information. In
addition, previous research has shown that school nurses expressed difficulties
documenting psychosocial health (Clausson, et al., 2003). Therefore, access to
content information in documentation with high validity is an important
prerequisite for the care provided and for contributing to knowledge
development.
According to the WHO, the ICF-CY health classification provides a common
language and advances evidence-based practice. It is the only health
classification that can be used as a guide holistically and inter-disciplinarily
(World Health Organization, 2007). So far, the ICF-CY has been used for
children with disabilities. If it can be useful with its conceptual framework and
common language for all children, not only those with disabilities, the ICF-CY
can contribute to exposing different perspectives on health.
31
The rapid development of the use of a coherent electronic version of the HR
means that multi-professional and inter-disciplinary care will be reflected in the
documentation. This is a challenge for all professionals, and in this thesis it
concerns the nurses and physicians in the CHS and SHS. They are included in
teams together with psychologists, dieticians, social workers and
preschool/school teachers, all working with children’s health and wellbeing. It
is necessary to obtain a complete picture of children’s health because of the
indication that psychosocial health among children and youth is declining. The
requested information in the documents used in the CHS and SHS guide the
professionals’ work in specific directions, which means that all perspectives on
health – physical as well as psychosocial – must be included in the content of
documentation. More knowledge is needed to determine whether the
documentation of health reflects a holistic view with the purpose of achieving
high content validity and quality of the child’s health on an individual as well as
a population level. Regarding children’s right to be responded to through a
holistic view on their health, there was a need for investigation and analysis of
the content of information in the documents used in the CHS and SHS, to
determine whether the services live up to the requirements.
Aim
The overall aim was to analyze whether the documentation used by the Child
and School Health Services reflects a holistic view on health as represented by a
bio-psychosocial perspective.
The objectives were to:
•
investigate the content of information on children’s health in the
documentation (Studies I, II, III)
•
investigate nurses’ and physicians’ views on the documentation of
health information and on the electronic version of the national
standardized HR (Study IV)
•
explore the utility of the ICF-CY as a tool for analyzing whether the
documentation reflects a holistic view on health (Studies I, II)
32
Method
Design
All studies were based on a descriptive design. Both quantitative and qualitative
methods were used, depending on the research questions. Study I was
explorative and based on a document analysis, with an additional aim to
investigate the utility of the ICF-CY in linking health data. Study II was also a
document analysis based on health questionnaires. The content analysis had a
deductive approach using the ICF-CY, on an item-by-item basis in Studies I
and II. Hence a quantitative descriptive content analysis design was an
appropriate choice. In Study III little was known about the content of the free
text notes in HR, so a qualitative content analysis with an inductive approach
was chosen (Polit & Beck, 2008). In addition, a quantitative descriptive analysis
was executed (Krippendorff, 2004). Study IV was descriptive, and included
nurses and physicians from the CHS and SHS. A quantitative method was
chosen to investigate group differences concerning views on transferring
documentation and opinions on using the electronic version of the HR. An
overview of the characteristics of each Study is presented in Table 1.
Participants: suppliers of materials
(Studies I, II and III)
In Studies I, II and III, participants contributed by serving as suppliers of
materials for analysis; see Table 2. At the beginning (2007) of the Swedish
national IS project, the “Child Health Data Project”, a national expert group
consisting of nurses and physicians within the CHS and SHS was established by
the Swedish Association of Local Authorities and Regions. The nurses (n=4)
and physicians (n=4) were recruited from their respective association. The
purpose of the national expert group was to produce one term list each for the
CHS and SHS (Study I), with important information of children’s health and
development that were recommended to be included in the HRs. Additionally,
a regional working group was set up, comprised of nurses and physicians, in
total 17, from the services in southern Sweden. The purpose of the working
group was to judge the interpretation of some broad and vague descriptions of
the essential information using the selected ICF-CY definitions made by the
first author.
33
Table 1. Overview of the characteristics of each study.
Study
Title
Design
Method
Data
source/Participants
I
Mapping of
children’s health
and development
data on population
level using the ICFCY classification
system
Content of Swedish
school health
questionnaires
Descriptive
Explorative
Quantitative,
deductive
content analysis
Lists of health terms
compiled by
professionals from
Child and School Health
Services
Descriptive
Descriptive
Quantitative,
deductive
content analysis
Qualitative and
quantitative,
inductive content
analysis
Views on health
information and
perceptions of
standardized
electronic records
among staff in Child
and School Health
Services
Descriptive
Comparative
Questionnaire
consisting of 28
structured and
semi-structured
questions
II
III
IV
Psychosocial health
information in free
text notes of
Swedish children´s
health records
Time of
data
collection
2007/2008
Analysis
47 health
questionnaires used by
Child and School Health
Services
75 health records from
Child and School Health
Services
2009/2010
Descriptive
statistics
2010
484 nurses and
physicians from Child
and School Health
Services
2009
Qualitative
content analysis
Quantitative
descriptive
analysis
Descriptive
statistics
Descriptive
statistics
Group
comparison with
Chi-squared tests
Study II involved nurses and physicians who were asked to send one copy of
every type of health questionnaire used in screening children’s health and
development. A total of 218 health questionnaires were provided. These health
questionnaires were recruited from the participants in Study IV.
In Study III, to analyze the free text notes in the HRs, 120 records were
requested from a total of 60 nurses. Of the 120 HR that were requested, 75
(63%) were provided. Both a convenience sampling including three neighboring
counties in southern Sweden and a dimensional sampling including all age
groups and large as well as small municipalities were applied (Polit & Beck,
2008).
Table 2. Participants as suppliers of materials for analyses in Studies I-III.
Study I
Health terms on lists
Study II
Health questionnaires
Study III
Free text notes in
health records
CHS
SHS
CHS
SHS
CHS
SHS
Participants
National
expert
group
n=4
National
expert
group
n=4
375/510
109/280
17/30
21/30
Materials
for analyses
124/174*
57/77*
19/25*
123/193*
34/60**
41/60**
* included/collected; ** included/requested
Data collection (Studies I, II and III)
In Study I, the collected data consisted of lists of health terms based on what
should be included in the national standardized electronic version of the HR in
the CHS and SHS. The lists were developed by the national expert group
consisting of nurses and physicians, and were provided by the Swedish
Association of Local Authorities and Regions. The health information on the
lists was called ‘health terms’, since it was derived from the national IS project.
In agreement with the Swedish Association of Local Authorities and Regions
and the National Board of Health and Welfare, terms concerning interventions
were excluded since a Swedish classification system for care interventions has
already been developed. Further excluded health terms from the lists before the
linking was performed were diagnoses, vaccinations, interventions and personal
35
factors such as age and sex. Personal factors like age and sex were excluded
because the ICF-CY cannot handle such information in its current form.
In Study II, a total of 218 health questionnaires used within the services in three
counties formed the basis of the analyses. Based on screening of health
questionnaires, 76 were excluded as they were duplicates (n=65), solely related
to the caregiver’s health (n=5), or checklists of vaccinations (n=6). A total
number of 142 questionnaires remained for analysis; see Table 2.
The HRs in Study III were obtained from three counties in southern Sweden.
Following the approval of coordinators, nurses were selected for the study
based on the first 20 nurses per county, in alphabetical order by last name. The
inclusion criteria for HRs were that all ages were represented, and that smaller
as well as larger municipalities participated. The children were divided into the
following groups: 0-2 years (0-24 months), 3-5 years, 6-11 years and 12-18
years. The purpose was to obtain as broad variation as possible of the content
of free text notes in the HRs. The coordinators informed 60 nurses by email
that they would receive a letter about the survey within a few days.
Data analysis (Studies I, II and III)
To make inferences from the texts, content analysis was applied in Studies I, II
and III. The content of the lists of health terms (Study I) and the health
questionnaires (Study II) containing information on health and health aspects
was readily apparent and needed almost no interpretation of underlying
meanings. As the ICF-CY guided the data collection in Studies I and II and the
content was on a low level of abstraction a deductive, manifest content analysis
was performed. Since little is known about the content of the free text notes, a
content analysis with an inductive approach was chosen (Study III). The free
text notes consisted of short sentences and revealed no deeper meaning related
to the topic, so a manifest analysis was chosen. The labeled categories answered
the question of what the content of the health information contained in the free
text notes.
In Study I, one list of health terms each from the CHS and the SHS formed the
basis of the analyses. The procedure was divided into different steps: reviewing,
linking health terms to the ICF-CY codes, verification and continued linking of
health terms. The lists were reviewed and refined. Further, medical diagnoses
belonging to the ICD-10, different types of vaccinations and heredity were
excluded. Guidelines and rules for the linking procedure will be explained later
in this text.
36
In Study II, a total of 142 health questionnaires were included for analysis. In
the health questionnaires, demographic variables such as sex, birth date and
address were excluded. The health questionnaires were designed for different
ages and school years and where thus divided into established age groups
(Simeonsson, 2006). Since only two health questionnaires for children aged two
years and younger were identified, an age group of 0-5 years was created. After
analyzing 47 questionnaires and linking their health items to the ICF-CY,
saturation had been reached (Polit & Beck, 2008). To ensure the saturation, the
remaining 95 health questionnaires were screened visually. Both focus of
content and target groups differed between the health questionnaires. Two
common foci of the content were the assessment of health in general, and
speech/language. The target groups of the health questionnaires are presented
in Table 3.
Table 3. Distribution of analyzed health questionnaires (n=47).
Target group (respondents)
Age
groups
Focus of health questionnaire
Professionals
Caregivers
Children
General
health
Speech/
Language
0-5
15
4
-
8
11
6-11
1
11*
6
18
-
12-17
5
5
10
*One of the 11 health questionnaires was directed at both the caregivers and
the child.
In Study III, the software program ATLAS.ti was used for storing, ordering and
retrieving the information (Krippendorff, 2004). All content analysis is guided
by research questions, and the main question was “What is the content of
health information in the free text notes in children’s HRs?” To get a sense of
the whole picture within the text in each HR, the text was read several times
and the descriptions in the Krippendorff analyzing model were followed in
different steps (Krippendorff, 2004). Due to the lack of knowledge of what
information was contained in free text notes the approach was inductive, in that
the codes were developed through a close reading of the records. The analyst’s
interactions with the data revealed subcategories and categories.
37
Linking data to the ICF-CY
(Studies I, II and III)
Guidelines and rules for linking
The data analysis followed the linking steps based on ICF-CY guidelines for
assigning codes (World Health Organization, 2007). In addition to the WHO
guidelines, eight validated linking rules developed and refined by Cieza (2005)
and her colleagues were used when linking information on health to codes in
the ICF-CY; see Table 4 (Cieza, et al., 2005).
Table 4. Eight specific rules for the linking of health information in documents
to codes in the classification (Cieza et al. (2005), adapted and abbreviated).
Linking
rules
1
2
3
4
5
6
7
8
Content of the rules
To have acquired good knowledge about the whole framework
To link each meaningful concept to the most precise category
Do not use the so-called “other specified” categories
Do not use the so-called “unspecified” categories
If a meaningful concept is not sufficient for making a decision
about the most precise category, the meaningful concept will be
assigned nd (not definable).
Special cases of this rule:
nd-gh
Not definable - General health
nd-ph
Not definable - Physical health
nd-mh
Not definable – Mental health
nd-qol
Not definable – Quality of life
Personal factors such as gender, age, heredity, social background
etc. will be assigned pf
If a meaningful concept is not contained in the classification and it
is not a pf, it will be assigned nc (not covered)
Diagnosis or health conditions will be assigned hc (health
condition)
According to the WHO the linking process follows three steps, the first of
which is to identify which of the components Body Functions (b), Body Structures
(s), Activities and Participation (d) and Environmental Factors (e) the health term
belongs to. The categories are denoted with unique alphanumeric codes,
38
making it possible to classify on both an individual and a population level.
When the component with its corresponding letter is found, the second step
consists of finding the chapter corresponding to content relevant to the given
component. The third step involves selecting the appropriate level category for
the health term. The implemented detail level of classification depends on the
clinical needs presented. For example, to link the health item “seeing”, the first
step is to identify the component to which it belongs. “Seeing” is a physiological
function, and hence belongs to Body Functions (b). Secondly, the most
appropriate chapter in this component is called “Sensory functions and pain”( b2)
on the first category level with low detailed grade. Finally, when selecting the
appropriate level of category for the health item, seeing functions are found on
the second level and two more detailed alternatives are available on the third
and fourth category levels (see Figure 3).
Figure3. The structure of the linking processes. An example of how to link the
health term seeing, which belongs to the Body Functions component.
Linking process (Studies I, II)
In Study I the health terms on the lists were linked to the highest level of detail
to explore the extent to which it was possible to classify them. During the
linking procedure, some of the health terms on the lists appeared to have broad
descriptions, e.g. “enjoys the school day”. There is no description in the
national guidelines for SHS (National Board of Health and Welfare, 2004) of
which content should be included in such health terms. Broad descriptions like
the one above were analyzed and linked to relevant ICF-CY definitions of
health terms, such as the child’s relations with classmates, engagement in
learning, coping with general tasks and demands, etc. These broad descriptions
39
of health terms were interpreted into ICF-CY codes. These linked codes with
their corresponding descriptions called for verification.
To verify the accuracy of the interpretations a regional working group was
established, consisting of 17 professionals in leading roles at the services in
three counties in southern Sweden. They reviewed the content of selected
health terms with more than one code descriptor. The members of the regional
working group received a letter with descriptions of the procedure of the
verification of health terms. Each member also received a number of health
terms and their descriptions. The descriptions were quoted from the service
acts or the ICF-CY’s explanation of the codes. It was requested that the
participants answer whether the descriptions of the health terms were correct,
partly correct or incorrect. If they deemed an answer partly correct or incorrect,
they were asked to suggest a more correct description.
In Study II, the second category level was chosen for the intended aim used for
screening children’s health and development. When all health information had
been linked, some occurred frequently within and between the health
questionnaires and was called “total occurrences of ICF-CY codes”, compared to
“specific ICF-CY codes”, which were counted only once.
As recommended by Cieza et al. (2005), health items that were not possible to
link to ICF-CY codes were categorized as different categories of “other health
information” (Cieza, et al., 2005). Examples of “other health information” included:
interventions, additional information (not definable), allergy, diabetes (health
conditions), gender, heredity, age (personal factors), thumb-sucking, pacifier use (not
covered), perceived health, (not definable-general health), value health (not definablequality of life).
To compare the results of the different Studies (I, II, III) considering a
biopsychosocial perspective, the subcategories in Study III were roughly linked
to the ICF-CY.
Participants (Study IV)
All permanently employed nurses and physicians in the CHS and SHS in three
counties were invited to participate in Study IV. Convenience sampling was
used, including neighbor counties in southern Sweden. Of the 240 nurses and
243 physicians in the CHS, 162 (68%) and 84 (35%) were willing to participate.
Of the 270 nurses and 37 physicians in the SHS, 213 nurses (78%) and 25
physicians (68%) participated.
40
Data collection (Study IV)
For the purpose of Study IV a questionnaire was constructed. It was tested in
the field for feasibility and evaluated individually by eight professionals. After
this review, the wording of some of the questions was revised to reduce
ambiguity and improve readability. The questionnaire consisted of 28 questions,
some structured and others semi-structured, with space for comments. The
comments did not prove to be important for the result. The 28 questions
covered demographic data (n=9), transferring HRs and health information
within and between the CHS and SHS (n=11), and the professionals’
perceptions of a national standardized electronic HR (n=8).
The coordinators of the CHS and SHS were informed about the survey and
were asked to distribute a list of people in leading positions at the services in
each municipality. These people were asked to distribute the questionnaires to
each nurse and physician at their local organization. A postal letter with
informed consent was distributed, also containing a postage-paid envelope.
Each questionnaire was coded by letters: one signifying county, one signifying
CHS or SHS, and one signifying municipality. Of 790 distributed postal
questionnaires, 484 had been completed (61%) and returned after two
reminders. External dropout was high among the physicians within the CHS,
with a response rate of 35%.
Data analysis (Study IV)
In Study IV, the questions in the constructed questionnaire with a four-grade
ordinal scale (totally agree, partly agree, partly disagree and totally disagree were
transformed into dichotomous variables (agree and disagree). The data were
analyzed using the statistical software Statistics 17.0. The dichotomous variables
and questions that were ranked for group comparison were analyzed for group
differences using chi-squared tests. A significance level of p < 0.05 was
accepted (Kazdin, 2003)
Ethical considerations
The conducting of research always requires ethical consideration. The studies
have considered the four fundamental ethical principles derived from
Beauchamps and Childress (2001) – autonomy, beneficence, non-maleficence
and justice – which are perceived as universal and timeless in any human
culture (Tangwa, 2009). The principles of autonomy were considered in the
verbal and written information presented to the informants (Studies II, III &
IV) and in their informed consent (Study III). In accordance with the guidelines
41
in Swedish law (SFS 2003:460) which are equally central in other regulatory
documents (World Medical Association, 1964), the information letter explained
the aim and objective of each study, the voluntariness of participation and the
right to withdraw without consequences. Two separate information letters, one
to the caregivers and one to participants 15 years or older, were used to request
permission to collect data from the HRs (Study III). We requested that the
informed written consent of the participants (Study III) was to be safely stored
at the clinics in the CHS and SHS. All participants (Studies II, III & IV) were
informed that the data material would be handled in a way that guaranteed
confidentiality. If the participants had any questions or doubts, they could
contact people mentioned in the information letter.
Beneficence and non-maleficence are best considered together, as the first does
good and the second avoids doing harm. They are complementary principles,
and translate into the obligation to maximize benefit while minimizing harm
(Tangwa, 2009). The risks of participating in Studies III and IV were
considered to be very low. Should a child be recognized in the free text notes
(Study III) by one of the participating researchers, the ethical principle of
confidentiality would be applied. However, the researchers are not employed in
the services, which minimize this risk. Further, the burden of participation for
the staff was the time required to answer the questionnaires (Study IV) and to
collect the data material (Studies II, III), which exceeded their everyday work
tasks. However, the staff’s participation was also an opportunity to actively
share their views and opinions on developing a core of research-based
professional knowledge (International Council of Nurses, 2006). Justice was
demonstrated in that all participants were given the same opportunity to take
part. The outcomes will hopefully generate practical beneficence in the future in
the CHS and SHS. The primary benefit of the research is theoretical, and
contributes valuable knowledge concerning the content of documentation. The
results of the studies have been reported to the clinical settings in which they
were conducted.
In accordance with Swedish law, ethical approval for the studies in this thesis
was obtained from the Research Ethics Committee of Faculty of Health
Sciences, Linköping University, Sweden, Dnr: 245-08 (SFS 2003:460). Approval
for Studies III and IV was also given by the coordinators of the services.
42
Result
Content of health information in documentation
In the CHS and SHS, 70% of the codes linked from the produced lists of
health terms (Study I) were found in the ICF-CY Body Functions and Body
Structures components, i.e. the biological perspective on health. Less than 30%
of the codes were found in the Activities and Participation and Environmental Factors
components, i.e. the psychosocial perspective on health. Within the
components, the identified codes were distributed unevenly among chapters. In
the Body Functions component, codes were identified in all chapters. However,
one-fourth of the coded health terms in the CHS were found in the chapter
concerned mental functions, e.g. self-other relationships, sleep functions and
mental functions of language. In the Body Structures component, the majority of
the health terms from the CHS were linked to structures related to movement.
For the SHS, most health terms were linked to codes with structures related to
the genitourinary and reproductive systems. In the Activities and Participation
component, most of the health terms from the CHS list were linked to the
chapters with topics like learning, communicating and mobility. A few health
terms were found in the chapter concerning undertaking single or multiple
tasks, carrying out daily routines, handling stress and managing one’s own
behavior. The ICF-CY codes based on the health terms from the SHS were
mainly linked to codes in the chapters on learning, mobility, and interpersonal
interactions and relationships. None of the services contained health terms that
could be linked to the chapter on domestic life (e.g. setting the table, making
one’s bed). Approximately 40% of the health terms linked to codes in the
Environmental Factors component were linked to codes in the chapter,
concerning products and technology. Among other things, this chapter deals
with food, including breast milk, beverages and medications. Also, in this
chapter, health terms were linked to codes dealing with products and
technology, e.g. for personal use in daily living, play, communication and other
aid.
In the locally produced health questionnaires (Study II), for all age groups, the
linked health items counted only once were distributed in the Activities and
Participation component (39%), followed by Body Functions (34%), Environmental
Factors (19%) and Body Structures (7%). The content of health items occurring in
at least 50% of the health questionnaires was found for the 0-5-year age group
in the Activities and Participation component. The most common health items
were related to the child’s ability to communicate verbally, e.g. express
him/herself with words, sentence structure, correct word order, and the
process which the child is acquiring or has acquired language, e.g.
43
understandable speech and language. For the 6-11-year age group, frequently
requested health information belonged to the Body Functions component and
related to pain functions such as headache, stomach ache and
back/neck/shoulder pain. It was followed by health items related to taking care
of one’s health, as defined in Activities and Participation, closely followed by issues
associated with the school education. Health items within Environmental Factors
were also common, and the single most frequently occurring ICF-CY category
was issues relating to the child’s and his/her family’s diet, such as nutrition
content, regular meals and beverages. The most requested health items within
the 12–17 year age group related to Activities and Participation, and also dealt with
issues in the category associated with taking care of one’s health. The second
most common group of health items was defined in Body Functions and related
to pain functions such as headache, stomach ache and back/neck/shoulder
pain. This was followed by a group of requested health items in the
Environmental Factors component relating to the same issues as for the 6-11-year
age group, i.e. the child’s and his/her family’s diet. The analysis of the text in
free text notes in the HR (Study III) in the CHS and SHS yielded seven
categories with associated subcategories. The categories were: development, family,
health problems, living habits, medical issues, preschool/school and leisure and wellbeing.
The content of the free text notes included general information, children’s
health status and problems specific to the child. The categories were
represented across all age groups, but were unevenly distributed. Nearly all
health information documented in free text notes was included in the national
standardized part of the HR for the CHS as well as the SHS. However, a lack of
certain subcategories deserves mention. The standardized part of the HR in the
CHS does not include information like general health or emotions/mood in the
wellbeing category. Likewise symptoms such as pain within the health problems
category are not included in the standardized part of the HR. Furthermore,
issues that may indirectly influence children’s health and wellbeing, such as the
mother’s mental health or medical problems are also information that is not
standardized. The standardized part of the HR in the SHS does not include
information such as enuresis in the category of development or pain, distress and
concentration in the health problems category. Also lacking in the standardized
part of the HR were issues described in the free text notes such as leisure
activities, emotions and sexual habits.
To get an overview of the health information documented in free text notes in
the HRs, the subcategories were linked to the ICF-CY. The purpose was to get
a picture of how the content was distributed across the components and make
it comparable with the health data in Studies I and II. Of the 39 subcategories
35 were distributed in the four components: Body Functions (n=11), Body
Structures (n=3), Activities and Participation (n=13) and Environmental Factors (n=8).
Additionally, four linkages were not related to any component but rather to
“other health information”. The main content of the free text notes focused on
44
psychosocial health, i.e. belonged to Activities and Participation or Environmental
Factors. In conclusion, the results between the three data sets – the lists of
health terms (Study I), the health questionnaires (Study II) and the free text
notes in the HRs (Study III) – showed different distribution between the
components in the ICF-CY regarding physical and psychosocial health (see
Figure 4).
Psychosocial health
Physical health
Lists with health terms (I)
Health questionnaires (II)
Free text notes in HRs (III)
0
10
20
30
40
50
60
70
80
Figure 4. Distribution (%) of children’s health variables in the three datasets,
linked to the ICF-CY. Physical health is represented by the ICF-CY
components Body Functions and Body Structures, and psychosocial health is
represented by the Activities and Participation and Environmental Factors
components.
Views on health information in documentation
In Study IV a majority of the nurses and physicians in the CHS and SHS agreed
that the HR system they used fulfilled their needs to perform documentation,
and were satisfied with the transfer of HRs; more in the CHS than the SHS
(p < 0.05). The transfer to other cooperation partners within the municipality
and council also functioned satisfactorily; however, there were nurses and
physicians who disagreed with this. A majority ranked a personal handover as
the most common way to transfer HRs within the municipality, regardless of
which type (paper or electronic) of HRs the services used.
A majority of the respondents agreed with the statement that more health
information than what was written in the HRs was transferred between the
CHS and SHS when children began school. The SHS participants agreed with
45
this to a greater extent than did those from the CHS, and nurses more than
physicians (p < 0.05). When a need arose to get supplementary health
information, in addition to what was written in the HRs, both within and
outside the municipality nurses and physicians in the SHS agreed to a larger
extent than nurses and physicians in the CHS (p < 0.05). In the respondents’
ranking of the most commonly transferred additional information, first ranked
was family function, second social health function and third psychological/mental health.
The SHS ranked social health function higher more often than the CHS did (p <
0.01). Nurses, more than physicians, ranked psychological/mental health as the most
common health area in which additional health information was transferred (p
< 0.01).
Views regarding an electronic version of the HR
In Study IV, the respondents in the CHS and SHS had positive opinions
regarding the possibilities of an electronic version of the HR. In total, the SHS
agreed more than the CHS, and nurses more than physicians (p < 0.05). Almost
all respondents agreed with the statements that the electronic version of the HR
postulates a uniform common language and assigns similar meanings to words
when working with, for example, age-specific guidelines for following children’s
health and development. The advantages of using an electronic version of the
HR were ranked, the highest being “safer documentation” followed by “allows
the following of children’s health and development” and third “facilitates
evaluation of the services”. More nurses than physicians ranked all three of
these advantages regarding the use of an electronic version of the HR (p <
0.05). The disadvantages of using an electronic version of the HR were also
ranked, the highest being “unauthorized people can read the HRs” followed by
“difficult to standardize children’s health and development” and third “takes a
longer time”. More nurses than physicians ranked that the documentation
would take a longer time (p < 0.05). A majority in the CHS (93%) and the SHS
(96%) agreed that there should be one common electronic version of the HR
for the CHS and SHS, i.e. one child (0–18 years) = one HR. More nurses than
physicians (p < 0.05) agreed with this. A majority in the CHS and the SHS
agreed that caregivers as well as the student should have the right to access the
content of the electronic version of the HR. However, one-fourth of those in
the SHS disagreed with this.
The utility of linking health data to ICF-CY
The two perspectives on health, physical and psychosocial, could be identified
by linking the health information to the ICF-CY. Nearly all of the health
information produced on the lists of health terms (Study I) from the CHS and
46
SHS judged to be directly related to children’s health could be linked to the
ICF-CY. Some of the health terms were represented by multiple codes. The
124 health terms from the CHS were linked to a total of 263 ICF-CY codes.
The 57 health terms from SHS were linked to 164 ICF-CY codes. Most of the
multiple-coded health terms were linked to body functions, e.g. abdomen, skin
tone and respiratory function. Health terms linked to the ICF-CY codes were
found from a low to a high level of detail. A low level of detail made them
broad and imprecise and required several coding alternatives, e.g. learning and
enjoying school. About 80% of the terms were linked to codes on a high level
of detail in the ICF-CY.
Health information with similar or identical content was able to be identified,
and occurred frequently in the health questionnaires (Study II). Health items
revealed a great deal of linkages (n=1000) to the ICF-CY. Of all linkages, 182
were not covered by the ICF-CY, i.e. “other information about health”. These
items not covered by the ICF-CY contained meaningful information, such as
“Is there anything else that is important for the services to know, such as
disability or somatic condition?”, but were not sufficient to make a specific
ICF-CY category i.e. “not definable”. Further, all diagnoses were assigned as
“health conditions”. Another type of content, not yet included in the ICF-CY, was
linked to the category of “personal factors”; it includes family background in terms
of late development of language and literacy, and whether the child was born
prematurely. The total list of health items linked to 818 ICF-CY codes
contained 110 specific codes when each code was only counted once. Table 5
displays the distribution of codes across ICF-CY components in the three age
groups.
47
Table 5. Requested information about health in questionnaires for children in
different age groups linked to total occurrences and specific numbers of ICFCY codes distributed in the ICF-CY’s components.
Components
of the ICF-CY
Numbers of specific ICF-CY
codes in different age groups
n=110
Total occurrences of ICF-CY
codes
n=818
0-5*
n=71
6-12**
n=54
13>***
n=54
0-5*
n=302
6-11**
n=281
12-17***
n=235
Activities and
Participation
26
(37%)
19
(35%)
18
(33%)
161
(53%)
102
(36%)
87
(37%)
Body
functions
25
(35%)
20
(37%)
22
(41%)
89
(29%)
121
(43%)
103
(44%)
Environmental
factors
13
(18%)
13
(24%)
12
(22%)
41
(14%)
54 (19%)
40
(17%)
Body
structures
7 (10%)
2 (4%)
2
(4%)
11
(4%)
4
(1%)
5
(2%)
*Age
group 0-5 = 19 analyzed questionnaires; **Age group 6-12 = 18 analyzed
questionnaires; ***Age group 13 > = 10 analyzed questionnaires
48
Discussion
A comprehensive documentation of children’s health, i.e. a holistic view,
includes biological as well as psychosocial perspectives. It is necessary that the
documentation includes both perspectives to promote health and prevent
illness. This thesis shows that information on health in different kinds of
documents A) reflected different perspectives on health, partly depending on
the child’s age, B) was influenced by traditions and views, and C) showed the
utility of ICF-CY as a common language and framework.
Different perspectives on health and age differences
The developed lists of health terms (Study I) recommended to be included in
an electronic version of the HR in the CHS and SHS mainly focused on
children’s physical health, i.e. a biological perspective on health. The relevance
of the unequal relation between the biological and the psychosocial
perspectives of the health terms can be questioned. There was a lack of
information focusing on protective determinants of health such as coherence,
participation and engagement in everyday life. The decisive importance of the
environment in a child’s health development is perhaps the strongest
determinant in promotion and prevention work with children’s health. The
interaction between the child and his/her parents is probably the most
important protection against psychosocial illness (El-Khouri& Sundell, 2005;
Swedish National Institute of Public Health, 2011a). Previous studies have
stressed that the interaction between children and parents, as well as that
between the parents themselves, plays a critical role in the development of
emotional, social and intellectual skills (L. Eriksson & Löfstedt, 2010; StewartBrown, 2008; Zimmermann, et al., 2008). This leads to a suggestion for
additional requested information in the standardized part of the HR, which
would contribute to a more comprehensive and informative HR. For example,
it is well established that there are connections between health and the crucial
role of the child’s family, the impact of peer status, achievement and learning in
preschool and school settings, and being part of a context (Almquist, 2009;
Almqvist, Hellnäs, Stefansson, & Granlund, 2006; Johansson, et al., 2007; Royal
Swedish Academy of Sciences, 2010). Truancy among students are often related
to learning difficulties and psychosocial problems (Problems within these areas
are increasing, and commonly appear as psychosomatic symptoms such as
recurrent pain symptoms among young children as well as schoolchildren
(Gobina et al., 2011; Hjern, et al., 2008; Petersen, Brulin, & Bergström, 2006).
Confirming the determinants behind this is difficult (Hagquist, 2009); however,
school stressors and poor quality of life have an impact on psychosomatic
49
complaints (Hjern, et al., 2008; Petersen, Hägglöf, & Bergström, 2009). Issues
within the mental and pain areas were presented in Study I, but are not included
in the standardized part of the HR. These issues are all important parts of the
requested information, and should be documented when a child’s functioning is
limited due to impaired mental health.
In contrast to the predominant medical content of the lists of health terms
(Study I), the analyzed various locally produced health questionnaires (Study II)
and information on children’s health in free text notes in HR (Study III) to a
larger extent covered psychosocial perspectives on health. The health
questionnaires, commonly used as a structured tool in health dialogues (Borup
& Holstein, 2010; Golsäter, Enskär, Lingfors, & Sidenvall, 2009; Golsäter, et
al., 2011), contained health information related to the child’s development
within areas such as communication, emotions, sleep, school environment,
psychosomatic symptoms and how to take care of one’s self by healthy living
habits. However, the requested information on the lists of health terms (Study
I), health questionnaires (Study II) and the content of the free text notes (Study
III) still focuses on the child as a person, rather than having the necessary focus on
the child within the family and preschool/school settings. One of the main areas to
focus on is the child’s participation in the context of everyday life within the
family and at preschool/school. When a child enters the social and culture
arena of a preschool setting, the focus shifts from his/her body and activities
towards interaction with peers and being included in the social context (BjörckÅkesson & Granlund, 2005). These issues are not visible in the documentation,
even though in 2010 86% of all children aged one to five years in Sweden
attended preschool (Swedish National Agency for Education, 2010).
There was novel information in the free text notes (Study III) that was not
included in the standardized part of the HR, and it belonged to the
psychosocial perspective on health, i.e. family relationships, general health, pain,
emotions (CHS); and pain, distress and concentration (SHS). In the absence of
a place to record comments about the child’s health in the standardized part of
the HR, the comments should be documented as free text notes in the record.
It could be suggested that these issues should also be included in the
standardized part of the HR, since they relate to mental health. Of interest in
this study (III) was also the finding that even when no health problems were
present and the information existed in the standardized part of the HR,
documentation of this fact was recorded in the free text notes, e.g. “breastfed
only”, “good growth”. Such documentation is unnecessary and inefficient.
Previous studies claim that nurses write a huge amount of routine notes in the
HR (Hörnfeldt, 2009; Törnvall & Wilhelmsson, 2008). Reasons for these
shortcomings might be the fear of not documenting enough and/or that the
HR does not fulfill the criteria for a useful tool. According to nurses’
50
documentation is time consuming (Clausson, et al., 2008a; Törnvall,
Wilhelmsson, & Wahren, 2004).
One of the hallmarks of the Swedish health services is to provide equal and
uniform health care. However, the findings in this thesis show that this is not
the case today for either the CHS or the SHS (National Board of Health and
Welfare, 2011). Since the national basic program in the CHS was withdrawn
and the services now work without national direction, the validity of the care
provided in general seems to be uneven (Magnusson, et al., 2011).
The extent of the use of locally produced health questionnaires in Sweden is
unknown. However, as no existing national evidence-based health
questionnaire acts as a supplement to the medical-dominant standardized part
of the HR, the services have to create their own solutions. School nurses strive
for balance between experienced vague formal goals and strong informal goals,
due to the absence of clear formal goals for the SHS (Morberg, et al., 2009).
Hence, one way to offer children and their families a more comprehensive core
program is to use health questionnaires (Golsäter, et al., 2011; Reuterswärd &
Lagerström, 2010). The content of health questionnaires and health dialogues
threatens to become arbitrary if the requested information is not based on
evidence and is not followed in a systematic way over the years. The SHS needs
to rely more on evidence-based methods (Morberg, et al., 2009), and there is
ongoing research at both a national and a regional level to develop and evaluate
health questionnaires to be used as a tool in health dialogues for school-aged
children (Golsäter, et al., 2011; Swedish National Institute of Public Health,
2008).
The results from the studies show that there is a need to develop the content of
the national standardized HR with one data set of evidence-based requested
information to be followed over the years. With a systems theory approach the
documentation, conceptualized as an attractor, will act as a boundary to explain
the system’s behavior (Schalock, 1994; Wachs, 2000). Currently, the HR in the
CHS and SHS is a tool for navigating the documentation in a certain direction,
which is not in agreement with the guidelines in legal requirements or the
current health panorama among children. The CHS and SHS are commissioned
by the government to organize and offer health care on equal terms, and to
provide care with a holistic view on the child and his/her family (National
Board of Health and Welfare, 2004, 2009a; Public Orphanage Foundation,
2005). The stability of a system is not an objective in itself; disturbances in
balance may be positive (Schalock, 1994; Wachs, 2000) and the time for change
seems to have come. Recently, a commission by the government to the
National Board of Health and Welfare, along with professional representatives
of the services, has aimed to produce national knowledge overviews and
guidance for three prioritized areas: mental health/ill health, development
51
deviations and somatic screening. A national quality register is requested in
order to provide equal care (National Board of Health and Welfare, 2011). The
focus of efforts in the services has changed to include more on psychosocial
health, but discrepancies between guidance and practice are too great today
(Hallberg, et al., 2005).
The requested health information in the health questionnaires was strongly
related to the ages of children. For the youngest age group, the requested
information was related mainly to communication and verbal speech
development for assessing delay. However, the relationship between early
language problems and subsequent psychosocial health over time is unclear
(Royal Swedish Academy of Sciences, 2010). For the older children, sleeping
habits, school education, sensation of pain and taking care of one’s health were
considered in the health questionnaires (Study II). Regardless of a child´s age,
there are important areas to follow across the years to promote psychosocial
health such as: family situation and peer relationships, psychosomatic
complaints and pain, depression, ability to maintain attention, lack of wellbeing
and problems with behavior and participation in everyday life situations
(Almqvist, et al., 2006; Halonen, Aunola, Ahonen, & Nurmi, 2006; Lee, 2011;
Swedish National Institute of Public Health, 2011b). These areas, to approach
with the right focus depending on the child’s age, would probably generate
predictors of subsequent functioning and should be followed in a systematic
way across children’s ages.
Traditions and views influence the documentation
There is a strong tradition in Sweden to subject virtually all children to agespecific health and development screening and assessment, with the purpose of
discovering early hidden health problems (Hagelin, Magnusson, & Sundelin,
2007; Hörnfeldt, 2009). This formal assessment is performed at the CHS and
SHS clinics, with the exception of the first home visit when a child has just
been born (Baggens, 2004). If a child is identified as having developmental
delays and does not perform activities as expected he/she is referred to, e.g.,
the pediatric department or habilitation services. The focus on the child’s
biological age when evaluating performance is influenced and ruled by
traditional routines, values and professional boundaries within the services
(Baggens, 2001; Magnusson, Garrett, & Sundelin, 2000; Morberg, et al., 2009).
Health problems and developmental delays are detected only to limited extent
within the CHS, and misleading assessments are made (Hörnfeldt, 2009;
Magnusson, Persson, & Sundelin, 2001; Sonnander, 2000) It is difficult to
assess development, as the developmental process is dependent on both
biological and social circumstances (Medicinska forskningsrådet, 1999). A
child’s performance in one context may differ or not work in another. From a
52
systems theory perspective, the assessment and intervention must be brought
into the context where the child resides. Today the development milestones are
assessed in the clinics, through direct single activities; however, the systems
theory emphasizes a co-varying cluster of influences to build the interventions
on. In addition, these influences operate against a background of time, and
interventions have the purpose of enhancing the operation of positive causal
chains (Björck-Åkesson & Granlund, 2005; Guralnick, 2011; Sonnander, 2000;
Wachs, 2000). The aim of screenings is to discover at an early stage whether a
child is in need of support and help in his/her development; thus, resources
must also be available for necessary interventions. It is also necessary to
evaluate the interventions to determine whether they have led to any results for
the child. For this, a reliable documentation is essential.
The participants in Study IV acknowledged that additional health information
besides what was documented in the HR was transferred between the CHS and
SHS. The most common additional information transferred to a receiving nurse
was related to the psychosocial perspective on health and concerned “family
function”. This indicated that the staff worked with psychosocial issues in their
clinical practice. From birth until the end of secondary school, staffs have
meetings with the child and the family approximately over twenty times. During
these meetings, apart from the regular screening and health surveillance, it
occurs that the nurse is privy to more or less sensitive information, e.g. the
family relationship. This information can be verbally given by the child or a
parent, but it can also be in the form of direct observation by the nurse.
According to previous studies, common reasons for not documenting
psychosocial issues are ethical considerations such as a fear of exposing the
families to unintended readers, which may lead to consequences for the family,
as well as a fear of misinterpretation and a lack of time and structure. As the
respective content of the national standardized part of the HR in the two
services is based on a medical view (Clausson, 2008; Hörnfeldt, 2009) and
current trends showing declining mental health, staff members make pragmatic
decisions about what to deliver. Regardless of the difficulties involved with
documenting psychosocial issues including sensitive information, omitted nonwritten information is a serious problem from a child safety perspective
(Tingberg, Falk, Flodmark, & Ygge, 2009). After all, what is not visible in the
documentation cannot be regarded as having been done!
Other sensitive issues within the “family function” could be the parental
socioeconomic situation. It can be questioned whether and how the services
should use parental socioeconomic status in the documentation; however the
connection between the parents’ socioeconomic conditions and the child’s
health is well established (Currie et al., 2008; Nuru-Jeter, Sarsour, Jutte, &
Thomas Boyce, 2010; Turney, 2011; Wallby & Hjern, 2009). Recording
socioeconomic conditions is perhaps difficult as it concerns families’ integrity,
53
and could be one reason for not documenting; nonetheless, it is important and
needs to be transferred. Children living in less favorable social circumstances
and with economic stress in the household more commonly have health
problems compared to children in socially advantaged groups (Mensah &
Kiernan, 2010; Swedish National Institute of Public Health, 2011c; V. Östberg,
Alfven, & Hjern, 2006). The services can offer early assessment of parenting
stress (M. Östberg, Hagekull, & Hagelin, 2007), and supporting parents in
improving the environment their children live in could be one way to enhance
the children’s wellbeing (Swedish National Institute of Public Health, 2011c).
One way to facilitate the documentation within this area is to determine which
important information could be requested concerning domestic life. It is well
known that participating in different everyday situations stimulates a child’s
development and wellbeing. The results show no information within the area of
domestic life in either the standardized part of the HRs or the health
questionnaires (Studies I, II). Previous studies also confirm the lack of
questions within the domestic life spectrum (Adolfsson, Malmqvist, Pless, &
Granlund, 2011). Using a common, unified language may make it easier to
bring up sensitive issues and facilitate their documentation.
The prerequisites for improving the documentation are good. In Study IV, the
staff within the CHS and SHS had a positive approach to documenting in an
electronic version of the HR, which agrees with previous studies (Ruland, 2002;
E. Törnvall, et al., 2004). The main advantage of an electronic version of the
HR was according to the staff a “safer documentation” followed by “following
children’s health and development over time”. Nurses were more positive to a national
standardized electronic version of the HR than physicians were. Nurses are the
key individuals in the CHS and SHS, meeting the child and the family most
frequently, and hence document more often (Krog, 2009; Olander, 2003;
Ruland, 2002). The nurses and physicians ranked as the number one
disadvantage of an electronic version of the HR that “unauthorized people could
read the health records”. This worry that unauthorized individuals will be able to
read the HR has also been confirmed in Swedish daily press: a patient has
reported to the Data Inspection Board that health care staff read in the
patient’s journal about previous occasions of care that had nothing to do with
the current occasion (Folcker Aschan, 2012). Staff is only allowed to read a
patient’s information if they are providing care to the patient and need
information for their work (SFS 2008:355). However, it is easier to track and
reveal unauthorized individuals who have been reading an electronic version of
the HR compared to a paper version. The second ranked disadvantage of an
electronic version was the “difficulty to standardize children’s health and development”.
Interdisciplinary collaboration between nurses, physicians, other occupational
groups and IT specialists (Green & Thomas, 2008; Krog, 2009) is needed in
order to participate actively in the establishment of health care data standards
(Spooner & Classen, 2009).
54
The electronic version of the HR gives professional groups the opportunity for
to integrate and reuse the same information to get a holistic view on health,
albeit with different focuses. There was also unanimous consent on the need
for a cohesive HR from birth to 18 years of age, which today is not possible
due to the law establishing that the CHS and SHS belong to different
authorities. These findings are in accordance with the ongoing development
work by the National Board of Health and Welfare (National Board of Health
and Welfare, 2011). To avoid multiple interpretations, terminology with a
uniform description of the health information could help specify what should
be documented (Anderson, 2005; E. Törnvall, et al., 2007). A common
language in a coherent electronic version of the HR is also what the staff within
the CHS and SHS agreed upon (Study IV), and can facilitate the documentation
of psychosocial health related to, e.g., a child’s environment such as the family.
The utility of the ICF-CY
The ICF-CY has previously mainly been used for children with disabilities.
According to the WHO (2007) it provides a unified, neutral and standard
language concerning all children. Hence, it was important to explore the utility
of the framework and the common language in the ICF-CY to analyze whether
the content of the documentation reflected a holistic view on health. As nearly
all children and students meet the CHS and SHS in Sweden today, the
documentation constitutes a source of information on their health.
Health variables related to the ICF-CY
The results in the present thesis confirm the utility of the ICF-CY and reveal
that a majority of the health terms (Study I) can be linked to the ICF-CY.
Different professions in the CHS and the SHS, nurses and physicians,
collaborated and developed the lists of health terms (Study I), and the linking of
these health terms proves the utility of the ICF-CY as a practical tool that can
be used multi-professionally for linking information on health. A majority of
the linked health terms were distributed within the body functions component
(Study I). The professionals at habilitation services in Sweden perceived the
ICF-CY contributed a sharpened focus on participation i.e. a psychosocial
perspective on functioning in daily life (Adolfsson, et al., 2010; E. BjörckÅkesson, et al., 2010), which confirms the need to identify health variables to
increase the validity of the requested information in the national standardized
HR in the CHS and SHS. The ICF-CY has also clarified and improved the
quality of inter disciplinary work to include a more systematic approach to
55
rehabilitation tasks (Adolfsson, et al., 2010; Ibragimova, Granlund, & BjörckAkesson, 2009; Rentsch et al., 2003).
A majority of the health variables were successfully linked into the conceptual
framework and were assigned one or more ICF-CY codes. For obvious reasons
some of the health terms were broad, such as abdomen and skin. For these
kinds of health variables the professionals need to have several code
alternatives. Some health variables – important ones like enjoying school or food –
were too broad and must be defined more precisely to minimize the variation in
interpretation and facilitate the linking. It is of great importance to be aware
that health variables need to be clearly defined and that the professionals put
effort into and agree upon their meaning. The degree of reliability lies in the
interpretation of the health variables. Unclear and broad descriptions in
documentation have also been confirmed in previous studies (Ehrenberg &
Ehnfors, 2001; E. Törnvall & Wilhelmsson, 2008).
Different perspectives on health were revealed when the health variables were
linked to the ICF-CY framework (Studies I, II, III). Whereas the content of the
local various health questionnaires (Study II) and the free text notes in HRs
(Study III) focused on psychosocial perspectives on health, the lists of health
terms focused on physical perspectives on health. The results call for evidencebased decisions regarding which health variables to include in the respective
HRs, to achieve a holistic view on children’s health. This regards also what
needs to be documented in a systematic way for the purpose of following
children’s health over time and to make evaluation possible. There is an
increased demand for follow-ups and outcome measurement systems within the
health care system. Since there is no national follow-up system in the CHS and
SHS, there is no such evaluation (National Board of Health and Welfare, 2011).
Linking health variables to the ICF-CY can provide the possibility to extract
children’s health data to support politicians and decision-makers on different
levels (World Health Organization, 2007). The framework of the ICF-CY can
be used to sharpen the focus in the requested information concerning skills
performances, participation and healthy living habits, as well as the child’s
interaction with his/her physical and social environment, with the purpose of
promoting health.
The need for a common language when documenting in the coherent electronic
version of the HR is currently an important issue, considering the expansion of
the multi-professional and interdisciplinary work. The meaningful use of an
electronic version of the HR and the promise of a standardized data set has
been described elsewhere (Bauer, Davies, & Pelikan, 2006; Johnson & Bergren,
2011). The need for a common language is great when transforming the
information in the documentation into a standardized language, with the
purpose in the long run of developing an evidence-based national data set
56
(Anderson, 2005; Johnson, Bergren, & Westbrook, in press). The gathering of
various professional skills and the sharing of information increase the holistic
view on health from different professional perspectives and can be seen as a
great benefit of inter -disciplinary work. Collaboration and the use of a
common language can improve documentation and minimize or even avoid
duplication, mistakes and delays (SOSFS 2008:14; Thylefors, et al., 2005; World
Health Organization, 2007). However, increased cooperation between different
professions requires clarity regarding what contributions should be made by the
individual trade groups (Morberg, et al., in press).
Limitations of linking health data to the ICF-CY
One limitation of linking some health variables to the ICF-CY categories was
that some of the categories were not sufficiently specific. In the Environmental
Factors component, the broad definition of some categories consistently led to
health variables like food/breastfeeding (e1100), referral/promoting a healthy lifestyle
(e580) having too low a level of detail. This limitation was also seen in the
Activities and Participation component, where some health variables were given
the same code but needed to be separated. In the Activities and Participation
component (d) in Chapter 5, Self-Care, under the category “Looking after one’s
health” (d570) there are codes for health variables that are commonly used and
assessed separately, such as managing nutritious food and maintaining physical fitness
(d5701) and getting immunized (d570). Also, in the Body Functions component
the emotional functions category (b152) does not differentiate between the
most common emotional functions like sadness, happiness and anxiety. These
limitations have been reported to the WHO. The organization demands that
people who work with the ICF-CY report discovered shortcomings (WHO,
2007) for a future revision of the current version.
Another limitation was that all aspects of the child’s health could not be linked.
Personal factors such as age, gender, heredity and social status are included in
the theoretical model (see Figure 1) yet are not classified and thus not codeable. For example, the health variable heredity includes information about
reading and writing disabilities, language delays and different kinds of diseases
among relatives, which are relevant and important when assessing children’s
health. The associations between a family’s socioeconomic status and the
inequalities of the children’s health are well known and thus a health aspect to
consider. Previous studies have identified the need for a category classifying
personal factors (Geyh et al., 2011; Jelsma, 2009).
A further limitation is that the ICF-CY is a numerous classification system. It
takes a great deal of time to familiarize oneself with how the classification
system is built up and to classify the health variables according to guidelines
57
and the magnitude of existing codes. Since the ICF-CY classification system is
universal and encompasses all aspects of human health and health-relevant
issues, it is a by necessity a numerous classification system. This can lead to
difficulties in practice, for instance be time-consuming. There is ongoing
research as well as projects to adapt the ICF-CY for specific purposes such as
core sets, where the ICF-CY categories are related to a specific diagnosis (Cieza
2004), and so-called code sets, including a set of categories most relevant in
following children’s development (Ellingsen, 2011) and functioning in everyday
life situations (Adolfsson, et al., 2011). It would facilitate matters if the CHS
and SHS came to terms with and developed a set of essential health variables
linked to codes for all children, in accordance with a holistic view on health, to
be included in the electronic HR. However, reductions in the core of the child
health promotion program can lead to difficulties in improving health
outcomes for children and their families with high levels of needs (Condon
2011), specifically if these reductions include psychosocial perspectives on
health.
Methodological discussion
Trustworthiness includes different procedures in qualitative and quantitative
research. It is associated with the rigor and trust of the outcome (Polit & Beck,
2008). There are several methodological considerations to be addressed to
show strength and limitations of the studies in this thesis. Content validity,
external and internal validity, face validity and reliability were considered in the
quantitative studies (Studies I, III, IV) and credibility, dependability,
confirmability and transferability in the qualitative study (Study III).
Validity and Reliability
There are different kinds of validity and reliability (Kazdin, 2003). The primary
meaning of the concept of validity is that a test measures what it is supposed to
measure, and reliability refers to the consistency of the measure. It was
important to be aware of other factors that could plausibly account for the
outcome when linking health characteristics to codes in the ICF-CY (Studies I,
II). To avoid threats to content validity, some important issues were considered.
First, the lists of health terms were developed by a national expert group
recruited from the professionals´ associations, together with the Swedish
Association of Local Authorities and Regions, who were considered experts
and to have great knowledge about children and their health. However, it was
not certain that the lists of health terms represented all important health
characteristics or if they were comprehensively included on the lists. Several
health terms appeared to have broad descriptions and generated possibilities for
58
different interpretations. Therefore, to achieve high content validity a regional
working group, including nurses and physicians from the services, was
recruited. Attending the regional working group was voluntary, and the
professionals who were included seemed to be motivated.
In the linking processes in Studies I and II, the guidelines and rules for linking
to the ICF-CY were closely followed to achieve high internal validity. A threat
could be that the investigator became more skilled in the linking process over
time; to prevent this threat and to achieve high internal validity, the investigator
used peer reviewers for consultations.
External validity relates to the extent to which results can be generalized beyond
the sample, settings and circumstances in which a study was conducted. The
timing of the linking process (measurement) can influence the outcome. It is
not only the timing of the linking process (measurement) but also the time
factor that can matter. Studies I and II did not take too long to execute, so
there were no novelty effects (Kazdin, 2003). The results of Study I were
strengthened, as earlier studies have shown results in the same direction. It is
possible to question whether the analyzed content in the questionnaires is
representative of that used in the CHS and SHS. However, the many
duplications and questionnaires with similar content tend to indicate that this is
the case at least in the three counties involved.
To assure and evaluate the inter rater-reliability (Kazdin, 2003) in the linking of
codes in Studies I and II, the number of corresponding/equal ratings was
divided by the total number of ratings and then multiplied by 100. In Study I, a
random selection of 30% was obtained from the health term lists and was sent
to one rater each for the CHS and SHS. The raters were selected for their
knowledge of the classification ICF-CY and experience of earlier linking
procedures. The results were 80% agreement for the CHS list and 95% for the
SHS list. Reliability has been estimated on the most detailed coding level for
each health term. In Study II, the first author and a co-reader author used a
selection of six health instruments, two from the CHS and four from the SHS,
from the different age groups, and analyzed the reliability of assigning second
category level codes to questionnaire items. The inter-rater agreement for the
predefined second category level code was 80%. Regarding the inter raterreliability, the results in Study I were strengthened as earlier studies have shown
results in the same direction. It can be questioned whether the analyzed content
of the questionnaires is representative of those used in the CHS and SHS.
However, the many duplicates and questionnaires with similar content tend to
indicate that this is the case at least in the three counties involved
In Study IV, the questionnaire to nurses and physicians was based on the
results of a pilot study, which was evaluated individually by eight professionals
59
within the CHS and SHS to face validity (Kazdin, 2003). The professionals in the
pilot read the questions, made comments if something was unclear, answered
the questions and returned the questionnaire. The outcome of the pilot led to
the revision of the wording of some of the questions to improve readability and
reduce ambiguity. There was a low response frequency from physicians in the
CHS, possibly because they perform a considerably smaller part of their work
within this service compared with both the nurses in the CHS and the
physicians in the SHS. Thirty-five percent of the physicians in the SHS worked
more than 60% with this activity, compared with 5% of the physicians in the
CHS. Perhaps the physicians in the CHS with few working hours did not
prioritize time to reply to the questionnaire – they may not see themselves as
part of the CHS organization development. If the content of the questionnaire
had been more about the physician’s role within the CHS, the response
frequency might have been higher. In addition, in the Swedish system there is a
coordinating pediatrician in each county with the role of developing and
coordinating activities within the CHS, but this is not the case in the SHS. This
may make interest in structural issues less relevant for a physician in the CHS
who actually meets with the children. There was also a difference in response
frequency between the nurse groups. A possible explanation for this could be
that it is more important for the nurses in the SHS to respond to questions
because they receive the HRs from the CHS when the child starts school.
However, it was a strength that all nurses and physicians in the CHS and SHS
in three counties were asked to participate and that the response rate was
relatively high.
Credibility, Dependability, Confirmability and Transferability
In Study III, the credibility, dependability, confirmability and transferability
were considered. There are different terms for labeling trustworthiness, and a
common criterion to confirm the “truth” of qualitative data is credibility (Lincoln
& Guba, 1985). In Study III, content analysis with an inductive approach was
chosen due to its openness, and with no attempt in advance to search for any
certain results. The researchers were curious and open-minded to interpreting
the content of the free text notes. Another aspect to point out as strengthening
credibility is clarifying the steps taken for the external reader (Polit & Beck,
2008). Other mentioned criteria for developing trustworthiness are
dependability, confirmability and transferability (Lincoln & Guba, 1985).
Dependability refers to the stability of data over time. One way to prevent threats
to the dependability is to have others concur that the results are consistent with
the collected data. One researcher performed the first part of the analysis
(Study III). To establish confidence in the findings, a senior researcher read and
analyzed a selected text separately. An open dialogue was then initiated in order
to compare the findings and continue performing the analysis. Confirmability
60
refers to the researcher’s neutrality concerning the data and interpretations.
However, no researcher can relate to his/her material in a completely neutral
way, and every researcher’s background with its advantages and limitations
should be kept in mind (Krippendorff, 2004) The researcher who carried out
the whole analysis worked as a school nurse, and the senior researcher had
knowledge of and experience with children. This sometimes helped when the
text in the paper HRs was unclear and hence difficult to read; together we could
lean on our knowledge and experience. Transferability considers the possibility of
the results to be transferred to other settings or groups. The results from 75
HRs from three counties in southern Sweden can only serve as a working
hypothesis to consider other settings or groups, with a description of the time
and context in which they were found (Lincoln & Guba, 1985).
61
Conclusions
Lists of health terms developed for inclusion in the HR mainly focused on
physical health. This predominant medical content was supplemented with
health information related to psychosocial health in requested content in the
locally produced health questionnaires and in the free text notes in the HR.
There was novel information in the free text notes that was not included in the
standardized part of the HR in both services.
Information concerning psychosocial health strongly focused on the child as a
person rather than on the child within a family and preschool/school
environment. The content of the health information was related to age groups
and not followed in a systematic way.
Nurses and physicians had a positive view on documentation. Traditions and
routines within the services influence the content of health information, which
results in pragmatic solutions. Health information not documented in the HR
was transferred between and within the services. This additional information
concerned the child’s context, first and foremost family function.
Nurses and physicians had a positive view regarding the possibilities of an
electronic version of the standardized HR, and that it postulates a common
uniform language. The main advantage of an electronic version of the
standardized HR was safer documentation, and the main disadvantage was that
unauthorized people may be able to read the HR.
The ICF-CY was useful in analyzing the extent to which the documentation in
the CHS and SHS pays attention to a holistic view. Different perspectives on
health in documents were revealed when the health variables were linked to the
framework of the ICF-CY.
The main limitation of linking health data to the ICF-CY was that some
essential health variables with different content had to be linked to the same
code, i.e. the level of detail was too low. Also the degree of reliability when
linking health information is dependent on the interpretation of this
information. Thus, it is important to put effort into agreeing on the meaning of
the content of the health information before linking to the ICF-CY codes.
62
Clinical implications and continued research
Additional requested information concerning psychosocial perspectives on
health in the standardized part of the HR would contribute to a more
comprehensive and informative picture of children’s health. There is a need for
more in-depth research on the additional information not recorded. What is
included in the content of family functions, and is it possible to standardize
sensitive parts of the content in order to make the documentation more
complete? Further, the services have to come to terms with which requested
knowledge-based information in documentation should be followed in a
systematic way over a child’s years. There is also a need to improve the
instructions in the HR regarding what information should be documented in
free text notes, since the results indicate that information on typical
development included in the standardized part of the record was frequently
repeated in the free text notes.
The utility of the ICF-CY as a tool has been confirmed, and challenges to
develop a common language to document more on psychosocial health are
indicated. There is a great need for a common language in interdisciplinary
work in order to transform the information in the documentation into a
standardized language. However, professionals have to put effort into and agree
upon the meaning of the content of health information. This thesis perceives
that the ICF-CY as a tool contributes a sharpened focus on the psychosocial
perspective on children´s health. The time has now come to develop one
common electronic version of the HR for the CHS and SHS, including
consensus standards related to a holistic view on children’s health and
development, to be followed from birth to the age of 18 years.
63
Summary in Swedish/
Svensk sammanfattning
Dokumentation i barn- och skolhälsovården
kartläggning av hälsoinformation från ett biopsykosocialt
perspektiv med hjälp av ICF-CY
Den svenska barn- och skolhälsovården arbetar för att främja hälsa och att
förebygga ohälsa hos barn från födelsen till och med avslutad
gymnasieutbildning. Idag är den fysiska hälsan hos barn bättre än någonsin
tidigare, men tendenser visar på att den psykosociala hälsan börjar bli sämre.
Det är viktigt att dokumentera hälsa med en helhetssyn så att det fysiska så väl
som det psykosociala perspektivet inkluderas. Vad som ska dokumenteras om
barns hälsa styrs av lagar, nationella riktlinjer och basprogram.
Dokumentationen styr verksamheternas arbete i en viss riktning och en
tillförlitlig dokumentation är en förutsättning för att ge barn en rättvis bild av
sin hälsa. Utvecklingen av en sammanhållen elektronisk journal innebär ett
utökat tvärprofessionellt reflekterande av den dokumenterade omvårdnaden.
Världshälsoorganisationens hälsoklassifikation Internationell klassifikation av
funktionstillstånd, funktionshinder och hälsa – barn- och ungdomsversionen (ICF-CY)
täcker kroppsliga funktioner och strukturer, aktivitet, delaktighet och miljöer
speciellt relevanta för spädbarn, förskolebarn, skolbarn och ungdomar. ICF-CY
erbjuder med sin funktionella betoning ett gemensamt språk för olika
professioner inom och mellan verksamheter att dokumentera barns hälsa i
relation till ett biopsykosocialt perspektiv. Det finns inte mycket forskning om
vad som dokumenteras inom verksamheterna och om innehållet reflekterar en
helhetssyn på barns hälsa. Därför var det angeläget att undersöka och analysera
innehållet i olika dokument som används inom barn- och skolhälsovården.
Det övergripande syftet med denna avhandling var att analysera om
dokumentationen i barn- och skolhälsovården reflekterar en helhetssyn på hälsa
ur ett biopsykosocialt perspektiv. Avhandlingen innehåller fyra studier där
kvantitativa och kvalitativa analyser valdes för att studera avhandlingens syfte. I
tre av studierna har den efterfrågade informationen och innehållet i olika
dokument analyserats. De dokument som har analyserats är listor med
efterfrågad information om barns hälsa som är avsedd att finnas med i den
nationella standardiserade hälsojournalen (I), efterfrågad information om hälsa i
lokalt konstruerade hälsoenkäter som används för att följa barns hälsa (II) och
innehållet i den fria text som utgör en del av hälsojournalen (III). ICF-CY har
utforskats som verktyg för att analysera om dokumentationen reflekterar en
64
helhetssyn (I, II,). I den fjärde studien har sjuksköterskor och läkares syn på
dokumentation, överföring av information om hälsa och uppfattning om
elektroniska version av den standardiserade hälsojournalen undersökts (IV).
Resultatet visade att innehållet på listor med efterfrågad information om hälsa
till största del fokuserade på den fysiska hälsan (I). ICF-CY som verktyg har
fungerat och en majoritet av information om barns hälsa gick att koda.
Resultatet i hälsoenkäterna handlade till största del om frågor inom områden
med ett psykosocialt perspektiv som kommunikation och språk,
psykosomatiska symtom och att ta hand om sin egen hälsa (II). Fokus låg på
barnets som person istället för att hellre lyfta fram barnet i sin familj, förskola
och skola d.v.s. sin omgivning (II). För att få en tillförlitlig kodning till ICF-CY
är det av stor vikt att informationen om hälsa är tydligt beskriven och att
användare lägger samma innebörd i den information som ska kodas (I, II).
Innehållet i den fria texten i hälsojournaler (III) handlade till största del om
frågor inom områden med ett psykosocialt perspektiv. Det fanns ny
information i den fria texten som inte fanns i den standardiserade delen av
hälsojournalen (III). Möjligheten att skriva fri text användes både till att
beskriva generell hälsa, de aktiviteter som besöket inkluderade och om
upptäckta avvikelser. Den efterfrågade informationen om barns hälsa och
innehållet i den fria texten var ojämnt fördelad i relation till barnets ålder (II,
III). Sjuksköterskor och läkare bekräftade att mer information än vad som
dokumenteras överförs inom och mellan barn- och skolhälsovården (IV). Den
informationen handlar om den psykosociala hälsan och då främst om
familjefunktion. Verksamheterna hade en positiv syn på de möjligheter som en
elektronisk hälsojournal kunde föra med sig. En övervägande majoritet av
respondenterna var positivt inställda till en hälsojournal som följer barnets hälsa
och utveckling från födelsen upp till 18 år (IV).
Kliniska implikationer och fortsatt forskning
Den efterfrågade informationen om barns hälsa i den standardiserade delen av
hälsojournalen behöver utökas för att också inkludera mer av den psykosociala
hälsan. Det skulle bidra till en mer heltäckande bild av barns hälsa. Vidare bör
verksamheterna komma överens om vilken kunskapsbaserad information om
barns hälsa som ska dokumenteras och följas över tid. Det gäller både på
individ- och befolkningsnivå. Det finns också ett behov av fördjupad forskning
kring vad den information, som överförs vid sidan om dokumentationen i
hälsojournalen, handlar om. Hur ser möjligheterna ut att använda ett
gemensamt standardiserat språk för att underlätta dokumentation av känsliga
frågor som påverkar barns hälsa? Vidare behöver instruktioner i befintliga
hälsojournaler förtydligas angående vad den fria texten ska omfatta. Resultat
visade att det var vanligt förekommande att information om barns hälsa i fri
65
text var upprepningar av information som fanns i den standardiserade delen av
hälsojournalen.
Nyttan av ICF-CY som ett användbart verktyg har bekräftats och ger
verksamheterna utmaningar att utveckla ett gemensamt språk för att också
inkludera den psykosociala hälsan i sin dokumentation. I det tvärprofessionella
och interdisciplinära arbetet är ett överenskommet gemensamt språk en
förutsättning för att kunna överföra dokumentationen till ett standardiserat
språk. Verksamheterna behöver lägga ned fortsatt arbete på att komma överens
om beskrivningar och innebörd i olika hälsobegrepp. Den här avhandlingen har
visat på möjligheter med att använda ICF-CY som ett verktyg för att skärpa
fokus på det psykosociala perspektivet på barns hälsa. Tiden är inne för att
utveckla en gemensam elektronisk version av den standardiserade
hälsojournalen, som inkluderar ett set av överenskommen hälsoinformation
med en helhetssyn på barns hälsa och som ska följas upp över tid.
66
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