Review
The impact of caring for those with chronic obstructive pulmonary disease (COPD) on carers’ psychological well-being: A narrative review

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Abstract

Objective

To identify and summarise studies of the psychological well-being of informal carers of people with chronic obstructive pulmonary disease.

Design

The review included studies if they reported the carers perspective of caregiving – studies that focused mostly on the person with chronic obstructive pulmonary disease were included only if the carers perspective of the caregiver role could be extracted.

Data sources

Electronic searches of MEDLINE, CINAHL, PsychInfo, Sociological Abstracts and The Cochrane Library were carried out between December 2008 and February 2009, with update searches undertaken in June 2011.

Review methods

A narrative approach was adopted to evaluate studies according to their contribution and drew together evidence from a range of methodologies, including qualitative and quantitative studies.

Results

Twenty studies were included in this review. Twelve studies focuses only on the caregiver (quantitative studies = 7 and qualitative studies = 5) and eight included caregivers and the person with chronic obstructive pulmonary disease (quantitative = 6 and qualitative = 2). Common methodological limitations of studies included in this review were a lack of non-caregiver age-matched comparison groups, focus on the experience of female carers, small sample sizes, and failure to follow-up caregivers longitudinally. Seven studies provided estimates of the prevalence of psychological distress among caregivers but no conclusions could be drawn from the current evidence base. The totality of the current evidence-base suggests that many factors are related to caregiver psychological distress, but it is not possible to gauge the prevalence of this at present.

Conclusion

Further studies are needed to clarify the prevalence of chronic obstructive pulmonary disease caregivers’ psychological comorbidity and disease specific factors that predict poorer carer health outcomes. That work will enable appropriate interventions to be developed and evaluated.

Introduction

Chronic obstructive pulmonary disease (COPD) is among the leading 10 causes of death worldwide (World Health Organisation, 2002). In the United Kingdom, it is estimated that over 3 million people live with the disease with an approximated annual health care cost of approximately £930 million (National Clinical Guideline Centre, 2010). COPD is a chronic and not fully reversible disease, thus treatment is aimed at promoting self-management and providing supportive care (Effing et al., 2007). Periods of disease stability are punctuated by acute exacerbations often requiring medical intervention and hospitalisation. Ultimately, COPD can have a substantial impact on the quality of life for both patients and their families.

In recent years emphasis has been increasingly placed on delivery of care to patients with COPD in the community. With this approach increased care responsibilities are placed on the families who are required to carry greater care burdens for longer periods of time. Caregiver burden reflects the extent to which a carer perceives their emotional health, physical health, social life and financial status to have been affected as a result of caring for a friend or relative (Zarit et al., 1986). The terminology used to define a ‘carer’ is ambiguous (Spence et al., 2008). The term ‘informal caregiver’ is often used to refer to a person who is providing care but is not a health care professional and is unpaid, however it has been argued that the provision of care provided by ‘informal’ carers is formal in everything but the receipt of pay (Beesley, 2006). In the UK, the term ‘carer’ has been adopted by the Department of Health (2006) to demarcate the care provided by family or friends from the care provided by health and social care professionals. Carers themselves, in particular spouses, do not refer to the notion of being a carer or caregiver, often describing the experience as an extension of their loving role and commitment to the person requiring support (Bergs, 2002, Seamark et al., 2004). In this paper, the terms ‘carer’ and ‘caregiver’ are used interchangeable and we adopt the following definition: people who look after a relative or friend who needs support because of age, physical or learning disability or illness, including mental illness (Department of Health, 2005). For the purposes of this review, the definition is applied within the context of living with COPD.

Despite the growing numbers of COPD caregivers and potentially high burden, little is known about the effect that COPD has on the caregivers psychological well-being. By way of example, the UK Department of Health made a commitment to produce a strategy to support people with COPD and their carers by offering education on managing their disease (Department of Health, 2010). Whilst this strategy may educate carers on how to support people with COPD, the needs of caregivers themselves are notable by their absence.

It has been estimated that between 40% and 70% of caregivers have clinically significant symptoms of depression (Zarit, 2006). A meta-analysis of 84 studies indicated that carers had significantly higher levels of depression and stress and lower levels of general subjective well-being than non-carers (Pinquart and Sorensen, 2003a). In that review, spousal caregiving was particularly stressful, as there were large differences in the levels of depression and stress of carers who were spouses compared to non-carers. In addition, caregiver strain is associated with a mortality risk that is 63% higher than non-caregiving comparisons (Schulz and Beach, 1999).

It has been purported that each chronic condition presents distinct caregiving challenges and as such research needs to delineate the disease specific from the general aspects of caregiving (Molloy et al., 2005, Biegel and Schulz, 1999). Previous reviews relating to the experience of COPD caregivers have focused on information needs and interventions designed to meet the needs of carers (Caress et al., 2009), and the general impact of providing care to a person with advanced disease (Simpson and Rocker, 2008, Boyle, 2009). The review by Caress et al. (2009) concluded that there is little evidence of the information and support needs specific to COPD caregivers, and no studies of interventions designed to meet these needs. However, prior to the development of interventions designed to help COPD carers in their caregiving role, greater understanding of the psychological impact of the provision of informal care is needed. The aim of this paper is to investigate, through a narrative review of international published literature, the psychological burden for COPD caregivers and their perception of the adequacy of care provided by health professionals.

Section snippets

Methods

The aim of this review was to identify and summarise studies of the psychological well-being of informal carers of people with COPD. Specifically, our objectives were to address the following questions: (i) What is the prevalence of psychological distress in carers of patients with COPD; (ii) What factors are associated with carer distress; and (iii) How do caregivers perceive support from health care professionals. The literature was reviewed using a narrative approach (Grant and Booth, 2009,

Types of studies included in review

Twenty studies met the inclusion criteria (Fig. 1). Twelve studies focuses only on the caregiver (quantitative studies = 7 and qualitative studies = 5) and eight included caregivers and the person with COPD (quantitative = 6 and qualitative = 2) (Table 1). Two studies used a non-caregiving age-matched comparative group (Ross and Graydon, 1997, Sexton and Munro, 1985). The majority of studies were conducted in the United States of America (n = 6), Canada (n = 3), Japan (n = 3) and Australia (n = 2) (Table 1).

Discussion

Our primary objective was to determine the prevalence of psychological distress and risk factors of distress for informal caregivers of people with COPD. It is important to develop a greater understanding of caregiving psychological distress to help clinicians to identify caregivers whom may require more intensive assessment and support mechanisms. Our review was limited by the sparse amount of studies that have assessed the prevalence of psychological distress, in particular depression, in

Implications and conclusion

In this paper, we have provided a review and analysis of studies that have explicitly investigated the psychological well-being of informal caregivers of patients with COPD. The totality of the current evidence-base suggests that many factors are related to caregiver psychological distress, but it is not possible to gauge the prevalence of this at present. To date, research into the psychological impact of COPD caregiving has largely been confined to small, local investigations with a potential

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