title: What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up.
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.
authors.affiliation: University of Bristol, Bristol, UK. hareth.al-janabi@bristol.ac.uk
authors.forename: Hareth
authors.initials: H
authors.lastname: Al-Janabi
authors.forename: Joanna
authors.initials: J
authors.lastname: Coast
authors.forename: Terry N
authors.initials: TN
authors.lastname: Flynn
mesh_terms: D000368:Aged; D000884:Anthropology, Cultural; D017028:Caregivers / Q000191:economics / Q000523:psychology*; D005260:Female; D006701:Home Nursing / Q000191:economics / Q000523:psychology*; D006801:Humans; D007389:Internal-External Control; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D036301:Qualitative Research; D019057:Quality-Adjusted Life Years; D012944:Social Support