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Multiple sclerosis: long-term social care and the 'family care pathway'
- Authors:
- BOWEN Ceri, MACLEHOSE Anna
- Journal article citation:
- Social Care and Neurodisability, 1(1), 2010, pp.31-38.
- Publisher:
- Emerald
Neurological disease and neurodisability can be a source of significant disruption to families. In this paper, the authors present details of personal accounts of relatives coping with one particular neurological condition - multiple sclerosis (MS) - reporting on statements that reflect coping with the condition from onset of symptoms to admission to care from the perspective of the family as a whole. The study involved 7 continuing care and respite facilities for people with complex neurological conditions, and the 25 participants were the visiting relatives of family members with MS either resident in one of the care centres or accessing respite care. Interviews were conducted by a graduate psychologist and data were transcribed and analysed. The article discusses the results in terms of stages of family adaptation to MS (emerging, diagnostic, long-term adaptation, crisis, chronic, and terminal), and makes recommendations for supporting family members in the form of a 'family care pathway' for neurology and neurodisability.