What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up
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
References (27)
- et al.
Process utility from providing informal care: the benefit of caring
Health Policy
(2005) - et al.
Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care
Social Science & Medicine
(2003) - et al.
Care for the caregiver: a review of self-report instruments developed to measure the burden, needs and quality of life of informal caregivers
Journal of Pain and Aging
(2003) Mothering multiples: a meta-synthesis of qualitative research
MCN: American Journal of Maternal/Child Nursing
(2002)- et al.
Using meta ethnography to synthesise qualitative research
Journal of Health Services Research and Policy
(2002) Too important to ignore: informal caregivers and other significant others
Pharmacoeconomics
(2006)- et al.
The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations
Quality of Life Research
(2006) - et al.
The experience of spousal carers of people with multiple sclerosis
Qualitative Health Research
(2004) - et al.
Developing attributes and levels for discrete choice experiments: a case study using qualitative methods
Journal of Health Services Research and Policy
(2007) - et al.
Positive aspects of caregiving: rounding out the caregiver experience
International Journal of Geriatric Psychiatry
(2002)
Patient and public involvement in health: The evidence for policy implementation
Synthesis through meta-ethnography: paradoxes, enhancements and possibilities
Qualitative Research
Metasynthesis: the state of the art – so far
Qualitative Health Research
Cited by (102)
The role of performativity in informal dementia carers' capability to be mobile
2023, Social Science and MedicineCapability theory inspired tools for aiding policy design
2022, EURO Journal on Decision ProcessesCitation Excerpt :As argued in Robeyns (2003), we can distinguish three levels in which the Capability Approach (CA) can be used: a critique, a paradigm, a tool to make interpersonal comparison of well-beings. Large part of the applications of the CA concerns poverty and social inequalities (see Alkire et al. (2014); Sen (1985); Zeumo et al. (2014)), but also in health economics (see Al-Janabi et al. (2008, 2011, 2012); Coast et al. (2008); Flynn et al. (2011)) or in urban planning (see Blečić et al. (2013); Fancello et al. (2020); Fancello and Tsoukiás (2020)). The CA has a strong theoretical background and presents a number of conceptual advantages (accounting for citizens’ diversity), but is far from being either an established norm for welfare measurement or an operational tool.
Validity and Responsiveness of Preference-Based Quality-of-Life Measures in Informal Carers: A Comparison of 5 Measures Across 4 Conditions
2020, Value in HealthCitation Excerpt :Considering QoL outcomes, such as “relationships” or “feeling supported,” may be more appropriate as they may map onto the issues important to carers better than HRQoL measures.15 Care-related QoL (CRQoL) measures, such as the Carer Experience Scale (CES),23 CarerQoL-7D,24 and Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) (which measures social CRQoL)25 are designed for use in economic evaluation with the intention of providing additional information to standard methods. Generic QoL measures, such as those capturing well-being and capability, are an alternative to HRQoL or CRQoL measures.