What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up

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Abstract

Government policies to shift care into the community and demographic changes mean that unpaid (informal) carers will increasingly be relied on to deliver care, particularly to older people. As a result, careful consideration needs to be given to informal care in economic evaluations. Current methods for economic evaluations may neglect important aspects of informal care. This paper reports the development of a simple measure of the caring experience for use in economic evaluations. A meta-ethnography was used to reduce qualitative research to six conceptual attributes of caring. Sixteen semi-structured interviews were then conducted with carers of older people, to check the attributes and develop them into the measure.

Six attributes of the caring experience comprise the final measure: getting on, organisational assistance, social support, activities, control, and fulfilment. The final measure (the Carer Experience Scale) focuses on the process of providing care, rather than health outcomes from caring. Arguably this provides a more direct assessment of carers' welfare. Following work to test and scale the measure, it may offer a promising way of incorporating the impact on carers in economic evaluations.

Introduction

Friends and family members who act as unpaid (or informal) carers are integral to the well-being of many patients. The informal care required, particularly for older patients, can be substantial. A family member of someone with dementia, for example, will often be on call 24 h a day, arranging care, doing housework, as well as feeding, washing, toileting, and reassuring the person they care for. While caring can often put people under strain, it can also be an important source of happiness in people's lives (Brouwer, Van Exel, Van Den Berg, Van Den Bos, & Koopmanschap, 2005). Government policies to shift care into the community, coupled with ageing populations suggest that informal carers will be increasingly relied upon to provide care. In order to evaluate the wider effects of health and social care interventions on carers, careful consideration needs to be given to informal care in economic evaluations.

Carers are rarely considered in economic evaluations (Brouwer, 2006) and the methods for including informal care are subject to some limitations. Quality Adjusted Life Years (QALYs) are the favoured method of measuring the impact (or effects) of an intervention (National Institute for Clinical Excellence, 2004, Russell et al., 1996). However, QALYs only cover health and may miss broader quality of life impacts on carers. Empirically, for example, QALYs were unable to detect any gains to carers from stroke training (Patel, Knapp, Evans, Perez, & Kalra, 2006), while theoretically QALYs may lack sensitivity to the psychological impacts of caring (McDaid, 2001). Another option is to consider informal care as a cost input. Approaches have been developed to assign informal care a monetary value (Posnett and Jan, 1996, Van Den Berg et al., 2004). These methods estimate the opportunity costs of providing care, but do not incorporate the positive aspects of caring. In summary, both QALYs and the monetary methods may miss important aspects (attributes) of the carer's welfare.

Various other quality of life measures have sought to capture the caring experience but are of limited use in economic evaluations. Deeken, Taylor, Mangan, Yabroff, and Ingham (2003) identified 28 generic measures, covering different aspects of care. The measures tend to focus on specific areas such as strain and needs and may therefore, like the economic methods, miss important attributes of carers' welfare. A second limitation of existing measures is their reliance on simple sum scores. These scores can give a misleading indication of overall attainment, as carers may value certain dimensions in the measure more than others (Van Exel, Brouwer, Van Den Berg, Koopmanschap, & Van Den Bos, 2004). This limits the usefulness of such measures in economic evaluations. Preference-based measures are an alternative to sum score measures. In a preference-based measure each potential response profile is assigned a ‘utility’ score. These scores can be derived through economic techniques such as discrete choice experiments, time tradeoffs and standard gambles.

This paper reports the development of a concise measure of the caring experience for use in economic evaluation. To ground the measure in the issues that are important to carers, two phases of qualitative research were used. First, a meta-ethnography of qualitative research was used to identify the key attributes of the experience of caring. Second, interviews were used to consolidate the attributes and develop the final measure. The literature search and interviews focussed on the experience of caring for an older person. This was in recognition of the importance of informal care in the total care provided to older people. This has implications for the generalisability of the measure, which are discussed in the final section of the paper.

Section snippets

The meta-ethnography

Meta-ethnography is a technique to synthesise qualitative research, or develop “translations of qualitative studies into one another” (Noblit & Hare, 1988, p. 25) and has been applied in a variety of settings (Beck, 2002, Britten et al., 2002, Campbell et al., 2003). This study employs the meta-ethnography framework to synthesise existing qualitative literature into conceptual attributes of the caring experience. This appears to be the first time that meta-ethnography has been used in the

Meta-ethnography

Fifty publications were identified as possibilities for inclusion in the meta-ethnography to generate conceptual attributes for the measure. Six publications were rejected because they employed quantitative methods or were secondary qualitative research. Table 1 shows the study characteristics of the remaining 44 papers. Purposive sampling of this set resulted in a set of six studies for the meta-ethnography. These studies listed in Table 2.

The characteristics of each of the six studies, as

Discussion

A measure of the caring experience for use in economic evaluation was developed through a meta-ethnography and a set of semi-structured interviews with carers. The six attributes of the measure were not altered substantially during the interviews, suggesting that meta-ethnography is a useful framework for identifying the attributes of a quality of life measure. Aside from acting as a check on the meta-ethnography findings, the interviews were useful in consolidating the meaning and content of

Acknowledgement

The authors would like to thank the carers who agreed to be interviewed. Without them this research would not have been possible. They would also like to thank Simone Angel for assistance in transcribing the interviews and the following people for helpful comments at various stages of the research: Rona Campbell, Jenny Donovan, Rachael Gooberman-Hill, Sandra Hollinghurst, Will Hollingworth, Paul MacNamee, Sian Noble, Stephanie Payet, Eileen Sutton, Bernard Van Den Berg and the three anonymous

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