title: Informal caregivers' experiences of formal support in a changing context.
abstract: As the location of long-term care of elderly people moves to homes and communities, and responsibility for care shifts to families, understanding the experience of people in this situation is necessary to ensure that support is appropriate, accessible and effective. The present paper explores informal caregivers' and recipients' relationships with formal support, drawing on thematic and narrative analysis of 30 in-depth interviews with self-identified family caregivers conducted over a year in a mid-size city in Ontario, Canada. All but six of these caregivers had had some interaction with formal support. The semistructured interviews explored caregivers' knowledge about, and perceptions and experiences of accessing and using formal support. Interpretation reveals how confusion and lack of knowledge about services, the inflexibility and lack of availability of services, and increasing pressure on the quantity and quality of publicly funded community-based resources combine to impact negatively on the experience of accessing and using formal support. Different ideas about the relative roles and responsibilities of seniors, informal caregivers and 'family' in general, and the state both shape and are shaped by policies and the situated realities of the provision of formal support. Providing care at home creates both opportunities and constraints for caregivers in their interactions with formal support. Lastly, this paper highlights the difficulties of interacting with publicly funded formal support as the costs of care are moved away from the state and onto families and individuals.
authors.affiliation: Health Geography, School of Geography and Geosciences, University of St Andrews, St Andrews, UK. jlw10@st-andrews.ac.uk
authors.forename: Janine
authors.initials: J
authors.lastname: Wiles
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006302:Health Services Research; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D008134:Long-Term Care / Q000523:psychology; D008297:Male; D008875:Middle Aged; D009864:Ontario; D012944:Social Support