JBI Database of Systematic Reviews & Implementation Reports
2016;14(2):16-25
Family members’ experiences and expectations of self-management
counseling while caring for a person with chronic obstructive
pulmonary disease: a systematic review protocol
Hannele Siltanen1
Virpi Jylhä2,3
Eija Paavilainen1
1. School of Health Sciences, University of Tampere, Finland
2. Nursing Research Foundation, Finland
3. Finnish Center for Evidence-Based Health Care: an Affiliate Center of the Joanna Briggs
Institute, Finland
Corresponding author:
Hannele Siltanen
[email protected]
Review question/objective
The objective of this systematic review is to identify and synthesize existing evidence of the experiences
and expectations of self-management counseling of adult family members (e.g. spouse, adult child)
who are informal caregivers of a person with chronic obstructive pulmonary disease (COPD).
The specific research questions are:
What are the experiences of adult family members in self-management counseling of COPD?
What are the expectations of adult family members in self-management counseling of COPD?
Background
Chronic obstructive pulmonary disease is one of the leading causes of mortality (forth) and morbidity
worldwide.1 During their lifetime, about one in four individuals is likely to be diagnosed with COPD.2 The
prevalence of COPD is likely to increase as the population ages1; in the western countries the burden of
COPD thus increases year by year.3 Chronic obstructive pulmonary disease is a preventable and
treatable but not fully curable disease. The main risk factor for the development of COPD is smoking,
but several comorbidities, such as cardiovascular disease, osteoporosis, diabetes, anxiety and
depression that coexist with COPD, also have a significant impact on the prognosis.1
Chronic obstructive pulmonary disease is a lifelong disease.4 Hence, in the management of COPD, a
chronic care approach is needed, which involves the affected person’s active participation and
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promotion of his/her autonomy in self-management. An essential part of the chronic care approach is
the partnership of health professionals with the person with COPD and family members.5 As the
disease progresses, people have several unpredictable transitions from diagnosis, to activity limitations
or functional decline with increasing dependency on help, to initiation of oxygen therapy, to
exacerbations and a shift from curative to palliative care. The trajectory of COPD is always unique and
thus difficult to predict.1,4,6,7 As a debilitating disease, COPD is connected to the individual’s quality of
life.8 Health-related quality of life (HRQoL) can be reduced by both COPD 9,10 and related
comorbidities.9,11,12 Furthermore, the quality of life of family members is also affected by COPD.6,7,13
People with chronic diseases are responsible for the day-to-day management of the disease.
Self-management as a lifetime task is the person’s ability to solve problems, make decisions, find and
use resources, and take action (e.g. change a behavior) in partnership with his/her healthcare
providers.14 The goal of self-management counseling is adherence to treatment, and improving the
ability to make healthier lifestyle choices (e.g. smoking cessation) and integrate the demands of the
disease into daily routines15 Successful self-management is linked to the person’s improved quality of
life,16,17 wellbeing and level of activity.17 Self-efficacy, which means the confidence to carry out behavior
required to reach an eligible goal, is the central concept in self-management.16 In COPD
self-management, the skills needed are guided by healthcare professionals. A prerequisite for
self-management is the person’s ability to integrate the demands of the disease, information and skills
into everyday life.15
Self-management at home, even in the exacerbation phase, is the preferred choice of people with
COPD.8 In addition to this, the current emphasis is on care in community settings due to the increasing
economic burden of chronic diseases.1 Self-management is usually carried out by a family
member-patient dyad, and spouses are the most common family members.6 Although the most
common help provided by family members is practical support such as housework, shopping and
transportation13,18, with illness progression, family members take on other caring activities such as
medication, symptom assessment, liaison with health professionals 19, helping their loved ones with
breathlessness and making decisions on when to call the emergency clinic in the critical phase.18,20
Previous studies have shown that family members perceive the caring relationship as a rewarding and
positive experience18,21, although in everyday life it can eventually become a burden on family
members6,18,22-24 due to overall concerns for the loved one18 and the constant fear about
breathlessness20,25, acute exacerbations20 and sudden death.6 Family members can experience
helplessness in such life-threatening situations20,25 because they are unprepared, for example, for
acute exacerbations.20 One aspect of these situations is the current trend towards early discharge after
exacerbations.25 Furthermore, the care of people with COPD can be challenging due to the complex
technologies, e.g. home oxygen, and multiple medication regimens for both COPD and comorbidities,
such as several kinds of inhalers or medication for each disease several times a day.
As the disease worsens, both the person with COPD and the family member can lose their social life,
which may result in social isolation.6,25,26 They can experience further losses, such as loss of previous
lifestyle and independence.25 It can also be taxing to adapt to new restrictions caused by COPD and
even reversal of roles.20 Due to the unpredictable trajectory of COPD, it is very difficult to provide a
prognosis to the person with COPD and their family members. Consequently, they have to live with
uncertainty about the future.20 Informal caregiving can also have other consequences. Caring for a
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person with many needs can be tremendously time-consuming; the caregiver may even find that his/her
performance at work begins to suffer.23 Moreover, those who leave the workforce to care for a family
member may later find it hard to re-enter the labor market during or at the end of the caring spell.27
Chronic diseases like COPD should be managed, if possible, in the family context in which the person
with COPD is able to receive help and support.15 The presence of a family member seems also to be a
significant factor in delaying residential care of a chronically ill person.28 Furthermore, it seems to be
both cost-saving and preferable for people with COPD to be cared for at home even during
exacerbations.8 However, people with COPD and their family members are faced with several
challenges in home care. This type of care requires that the family member-patient dyad has
information on a wide range of topics relating to the condition and skills needed to manage the chronic
condition and home care. Nevertheless, the information needs of people with COPD and their families
seem to be unmet in counseling; moreover, they do not always have a complete understanding of the
disease and of self-management.13 In several studies, family members have expressed a need for
support, information6,26,29 (e.g. drugs and symptoms of COPD) and advice (e.g. how to help their loved
ones)30 from health-care personnel. Due to the important role of family members31, especially in times of
exacerbations, it is critical that counseling is offered to family members to help them carry out their role
as informal caregivers as well as maintain their own physical and emotional health.6,23 Thus, more
information is needed on the kind of self-management counseling family members need and expect. In
this systematic review, the concept of counseling includes any advice or information for family members
of people with COPD in the context of self-management delivered by healthcare professionals (e.g.
during a clinical appointment or by telephone).
Prior to finalizing the protocol, preliminary searches in CINAHL, MEDLINE, the JBI Database of
Systematic Reviews and Implementation Reports and the Cochrane Library were conducted to ensure
that no systematic review has previously been published on this topic. In addition, DARE and
PROSPERO were searched to identify if any quantitative reviews related to this topic were published.
One narrative review32 and one systematic review8 were found. The narrative review aimed to identify
the information and support needs of carers, appropriate interventions to support carers, and
information on carers’ needs as reported in studies of people living with COPD in the community. The
conclusion was that there is a dearth of information on the needs of carers of people with COPD.32 The
conclusion of the systematic review on support for older people with COPD was that there is
inconsistency and lack of multiprofessional consensus in the provision of services. 8 According to that
review, people with COPD wished to be cared for at home, while self-management, individual care and
support for the person with COPD and family members were a crucial part of the management of
COPD.8 Neither of these reviews summarized current literature from the viewpoint of family members
using systematic review methods. Thus, there seems to be a gap in systematic reviews on the needs for
and expectations of self-management counseling for family members of people with COPD.
Keywords
Chronic obstructive pulmonary disease; COPD; family member; self-management; counseling
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Inclusion criteria
Types of participants
This systematic review will consider studies that include adults (over 18 years) who are family members
of individuals with any stage of COPD. The concept of family member refers to a person who is an
informal caregiver because of a mutual relationship with the person with COPD. Furthermore, studies
are included if family members have participated in self-management counseling organized by
healthcare professionals or have wished or planned to participate. All types of counseling methods are
included.
Types of phenomena of interest
This systematic review will consider studies that investigate family members’ experiences and
expectations of COPD’s self-management counseling.
Context
This systematic review will consider studies that investigate family members’ experiences and
expectations of COPD’s self-management counseling in the context of inpatients or outpatients care.
Types of studies
This systematic review will consider studies that focus on qualitative data including, but not limited to,
designs such as phenomenology, grounded theory, ethnography, action research and feminist
research.
Search strategy
The search strategy aims to find both published and unpublished studies in English and Finnish. A
three-step search strategy will be utilized in this review. An initial limited search of MEDLINE and
CINAHL will be undertaken followed by an analysis of the text words contained in the title and abstract,
and of the index terms used to describe the article. A second search using all identified keywords and
index terms will then be undertaken across all included databases. Thirdly, the reference list of all
identified reports and articles will be searched for additional studies. All published studies without time
limit will be considered for inclusion in this review.
The databases to be searched include: MEDLINE, CINAHL, PsycInfo and Scopus
The search for unpublished studies including thesis and grey literature will include the following
databases and websites:
Grey Literature database from New York Academy of Medicine, Agency for Healthcare Research and
Quality (AHRQ), WHO Library, The Global Initiative for Chronic Obstructive Lung Disease (GOLD),
European COPD Coalition, Europe E-thesis Portal (DART), Theses Finland (Linda), ProQuest
Dissertation & Theses Database (PQDT) and Dissertation Abstracts Online (DIALOG).
Initial keywords, their synonyms and related words and their combinations to be used will include, but
not be limited to: COPD, chronic obstructive pulmonary disease, family, spouse, adult children,
relatives, caregiver, informal caregiver, next of kin, cohabitant, self-care, self-management, counseling,
counselling, need, expectation and experience. In addition specific search terms and filters for
qualitative evidence will be considered.
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Assessment of methodological quality
Papers selected for retrieval will be assessed by two independent reviewers for methodological validity
prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs
Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements
that arise between the reviewers will be resolved through discussion, or with a third reviewer.
Data extraction
Data will be extracted from papers included in the review using the standardized data extraction tool
from JBI-QARI (Appendix II). The data extracted will include specific details about the phenomena of
interest, populations, study methods and outcomes of significance to the review question and specific
objectives.
Data synthesis
Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the
aggregation or synthesis of findings to generate a set of statements that represent that aggregation,
through assembling the findings rated according to their quality, and categorizing these findings on the
basis of similarity in meaning. These categories will then be subjected to a meta-synthesis in order to
produce a single comprehensive set of synthesized findings that can be used as a basis for
evidence-based practice. Where textual pooling is not possible, the findings will be presented in
narrative form.
Conflicts of interest
The authors declare that there are no conflicts of interest.
Acknowledgements
The authors would like to thank the member of Finnish review panel, Doctor Arja Holopainen, for her
valuable advice with the development of this protocol.
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Appendix I: Appraisal instruments
QARI appraisal instrument
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Appendix II: Data extraction instruments
QARI data extraction instrument
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