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Care and social integration in European societies
- Editors:
- PFAU-EFFINGER Birgit, GEISSLER Birgit, (eds.)
- Publisher:
- Policy Press
- Publication year:
- 2005
- Pagination:
- 324p.
- Place of publication:
- Bristol
This book provides descriptions and comparative analyses of the now complex and highly varied arrangements for the care of children, disabled and older people in Europe, set within the context of changing labour markets and welfare systems. It includes analyses of the modernisation of informal care and new forms of informal care, topics often neglected in the literature. Issues of gender, family change, social integration and citizenship are all explored in a series of chapters that report on original empirical, cross-national research. All contributors are high-ranking experts involved in the COST A13 Action Programme, funded by the European Union.
Longitudinal changes in the amount of informal care among publicly paid home care recipients
- Author:
- LI Lydia W.
- Journal article citation:
- Gerontologist, 45(4), August 2005, pp.465-473.
- Publisher:
- Oxford University Press
This study examined how the amount of informal care received by disabled elders changes when they are receiving publicly paid home care, and whether formal service use, disability, caregiving arrangements, and demographic characteristics of older adults predict changes in the amount of informal care. Hierarchical linear models were estimated, using 3-year data (12 repeated observations) collected from 888 elderly participants in Michigan's Home- and Community-Based Medicaid Waiver Program. The amount of informal care declined in the beginning period when publicly paid home care was received, and then it stabilized. Changes in activities and instrumental activities of daily living and caregiver residence predicted changes in the amount. The living arrangement and age of elders predicted different patterns of change over time. Neither formal service amount nor its change significantly predicted the amount of informal care. The study concludes informal caregivers do not relinquish caregiving when publicly paid home care is available. Expanding community-based long-term care is a means of fostering partnerships between formal and informal caregivers.
Dependence, independence or inter-dependence? Revisiting the concepts of 'care' and 'dependency'
- Authors:
- FINE Michael, GLENDINNING Caroline
- Journal article citation:
- Ageing and Society, 25(4), July 2005, pp.601-621.
- Publisher:
- Cambridge University Press
Research and theory on ‘dependency’ and ‘care-giving’ have to date proceeded along largely separate lines, with little sense that they are exploring and explaining different aspects of the same phenomenon. Research on ‘care’, initially linked to feminism during the early 1980s, has revealed and exposed to public gaze what was hitherto assumed to be a ‘natural’ female activity. Conversely, disability activists and writers who have promoted a social model of disability have seen the language of and the policy focus upon ‘care’ as oppressive and objectifying. ‘Dependency’ is an equally contested concept: sociologists have scrutinised the social construction of dependency; politicians have ascribed negative connotations of passivity; while medical and social policy discourse employs the term in a positivist sense as a measure of physical need for professional intervention. Autonomy and independence, in contrast, are promoted as universal and largely unproblematic goals. These contrasting perspectives have led social theory, research and policies to separate and segregate the worlds of ‘carers’ from those for whom they ‘care’. Drawing on the work of Kittay and others, this paper explores the ways in which sociological perspectives can develop new understanding of the social contexts of ‘care’ and ‘dependence’.
How do carers of disabled children cope?: the Ugandan perspective
- Authors:
- HARTLEY S., et al
- Journal article citation:
- Child: Care, Health and Development, 31(2), March 2005, pp.167-180.
- Publisher:
- Wiley
Community-based rehabilitation (CBR) was recommended by the World Health Organization in 1989 as the strategy for improving the quality of life of disabled people and their families, which should be built on local knowledge and practices. In Uganda, there is no documentation on how services relate to local knowledge. There is a need for increased knowledge and understanding of how family members cope with their disabled children to provide the basis for future service development. A qualitative phenomenological design was used to develop an in-depth understanding of how Ugandan families cope with their disabled children in their own communities. Data were collected from 52 families with children with disabilities from five impairment groups, through interviews and observations in three districts of Uganda, one urban, two rural. There are many children with disabilities who are included, loved and cared for by their families. A lot of time and money is spent on seeking a cure. The extended family systems are breaking down and the main burden of caring for a disabled family member generally falls on one, sometimes two, female carers. Male members act as gatekeepers, controlling the key decisions concerning the child and the associated resources. CBR should move the focus of their services away from the disabled individual towards the whole family. It is important to provide accurate information about causes and prevention of impairments, the realities of a cure, support and respite for the female carers, and opportunities for the involvement of fathers. This methodology is a practical mechanism for collecting data that have the potential to positively influence and guide the development of CBR practice in the locality. At a conceptual level the data support the philosophy of inclusion, social integration, the importance of trust and respect, and utilizing a holistic approach. These are eminently transferable to other settings.