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?
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 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 COPD9,10 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 professionals19, 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 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.
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.
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.
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.
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 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.
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.
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.
1. GOLD. Global Strategy for the Diagnosis, Management and Prevention of COPD, Global Initiative for Chronic Obstructive Lung Disease (GOLD) 2014. 2014; [internet]. [cited 2015 February 5]. Available at: http://www.goldcopd.org/
2. Gershon AS, Warner L, Cascagnette P, Victor JC, To T. Lifetime risk of developing chronic obstructive pulmonary disease: a longitudinal population study. Lancet 2011; 378(9795):991-996.
3. Mannino DM, Buist AS. Global burden of COPD: risk factors, prevalence, and future trends. Lancet 2007; 370(9589):765-773.
4. Reinke LF, Engelberg RA, Shannon SE, Wenrich MD, Vig EK, Back AL, et al. Transitions regarding palliative and end-of-life care in severe chronic obstructive pulmonary disease or advanced cancer: themes identified by patients, families, and clinicians. J Palliat Med 2008; 11(4):601-609.
5. Bourbeau J, Saad N. Integrated care model with self-management in chronic obstructive pulmonary disease: from family physicians to specialists. Chron Respir Dis 2013; 10(2):99-105.
6. Bergs D. ‘The hidden client’ - women caring for husbands with COPD: their experience of quality of life. J Clin Nurs 2002 09; 11(5):613-621.
7. Pinto RA, Holanda MA, Medeiros MM, Mota RM, Pereira ED. Assessment of the burden of caregiving for patients with chronic obstructive pulmonary disease. Respir Med 2007; 101(11):2402-2408.
8. Kirkpatrick P, Wilson E, Wimpenny P. Support for older people with COPD in community settings: a systematic review of qualitative research. JBI Database Sys Rev Impl Reps 2012; 10(57):3649-3763.
9. van Manen JG, Bindels PJ, Dekker FW, Bottema BJ, van der Zee JS, Ijzermans CJ, et al. The influence of COPD on health-related quality of life independent of the influence of comorbidity. J Clin Epidemiol 2003; 56(12):1177-1184.
10. Hu J, Meek P. Health-related quality of life in individuals with chronic obstructive pulmonary disease. Heart & Lung 2005; 34(6):415-422.
11. Sundh J, Johansson G, Larsson K, Linden A, Lofdahl CG, Janson C, et al. Comorbidity and health-related quality of life in patients with severe chronic obstructive pulmonary disease attending Swedish secondary care units. Int J Chron Obstruct Pulmon Dis 2015; 22(10):173-183.
12. Huber MB, Wacker ME, Vogelmeier CF, Leidl R. Comorbid Influences on Generic Health-Related Quality of Life in COPD: A Systematic Review. PLoS One 2015; 10(7), DOI:10.1371/Jul 13.
13. Gardiner C, Gott M, Payne S, Small N, Barnes S, Halpin D, et al. Exploring the care needs of patients with advanced COPD: an overview of the literature. Respir Med 2010; 104(2):159-165.
14. Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med 2003; 26(1):1-7.
15. Bourbeau J, Nault D, Dang-Tan T. Self-management and behaviour modification in COPD. Patient Educ Couns 2004; 52(3):271-277.
16. Bodenheimer T, Lorig K, Holman H, Grumbach K. Innovations in primary care. Patient self-management of chronic disease in primary care. JAMA 2002; 288(19):2469-2475.
17. Bentsen S, Langeland E, Holm A. Evaluation of self-management interventions for chronic obstructive pulmonary disease. J Nurs Manag 2012; 20(6):802-813.
18. Gautun H, Werner A, Lurås H. Care challenges for informal caregivers of chronically ill lung patients: Results from a questionnaire survey. Scand J Public Health 2012; 40(1):18-24.
19. Spence A, Hasson F, Waldron M, Kernohan G, McLaughlin D, Cochrane B, et al. Active carers: living with chronic obstructive pulmonary disease. Int J Palliat Nurs 2008; 14(8):368-372.
20. Gysels MH, Higginson IJ. Caring for a person in advanced illness and suffering from breathlessness at home: threats and resources. Palliat Support Care 2009; 7(2):153-162.
21. Janssen DJ, Spruit MA, Wouters EF Schols JM. Family Caregiving in Advanced Chronic Organ Failure. J Am Med Dir Assoc 2012; 13(4):394-399.
22. Grant M, Cavanagh A, Yorke J. The impact of caring for those with chronic obstructive pulmonary disease (COPD) on carers’ psychological well-being: A narrative review. Int J Nurs Stud 2012; 49(11):1459-1471.
23. Miravitlles M, Pena-Longobardo LM, Oliva-Moreno J, Hidalgo-Vega A. Caregivers’ burden in patients with COPD. Int J Chron Obstruct Pulmon Dis 2015; 10:347-356.
24. Nordtug B, Krokstad S, Sletvold O, Holen A. Differences in social support of caregivers living with partners suffering from COPD or dementia. Int J Older People Nurs 2013; 8(2):93-103.
25. Hynes G, Stokes A, McCarron M. Informal care-giving in advanced chronic obstructive pulmonary disease: lay knowledge and experience. J Clin Nurs 2012; 21(7):1068-1077.
26. Seamark DA, Blake SD, Seamark CJ, Halpin D. Living with severe chronic obstructive pulmonary disease (COPD): perceptions of patients and their carers: an interpretative phenomenological analysis. Palliat Med 2004; 18(7):619-625.
28. Ministry of Social Affairs and Health reports and memoranda 2013:10. Interim working group report: National Development Programme for the support of family care [Työryhmän väliraportti: Kansallinen omaishoidon kehittämisohjelma. 2013] In Finnish. [internet]. [cited 2015 June 3]. Available at: http://urn.fi/URN:ISBN:978-952-00-3483-2
29. Kanervisto M, Paavilainen E, Heikkila J. Family dynamics in families of severe COPD patients. J Clin Nurs 2007; 16(8):1498-1505.
30. Caress A, Luker K, Chalmers K. Promoting the health of people with chronic obstructive pulmonary disease: patients’ and carers’ views. J Clin Nurs 2010; 19(3-4):564-573.
31. Trivedi RB, Bryson CL, Udris E, Au DH. The influence of informal caregivers on adherence in COPD patients. Ann Behav Med 2012; 44(1):66-72.
32. Caress A, Luker KA, Chalmers KI, Salmon MP. A review of the information and support needs of family carers of patients with chronic obstructive pulmonary disease. J Clin Nurs 2009; 18(4):479-491.
Appendix I: Appraisal instruments
QARI appraisal instrument
Appendix II: Data extraction instruments
QARI data extraction instrument