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