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Caregivers of people with multiple sclerosis: experiences of support

Rehabilitation Sciences Research Group, University of Ulster, Newtownabbey, BT36 OQB, Northern Ireland, UK, lp.mckeown{at}ulster.ac.uk

A P Porter-Armstrong

Rehabilitation Sciences Research Group, University of Ulster, Newtownabbey, BT36 OQB, Northern Ireland, UK

G D Baxter

Rehabilitation Sciences Research Group, University of Ulster, Newtownabbey, BT36 OQB, Northern Ireland, UK

The aim of this pheno menological study was to gain an understanding of the experiences of a group of caregivers of people with multiple sclerosis (MS). Sixteen caregivers from Northern Ireland and the Republic of Ireland participated in focus group interviews. The theme of support, either sought or received, emerged as a major aspect of the experiences described. C aregivers’ feelings about, and experiences of, support appeared to change over time. Four common phases that caregivers experienced in relation to support were identified as: ‘rejecting’, ‘resisting’, ‘seeking’ and ‘accepting’ support. This paper will present and discuss these four phases. The study findings highlight the complexity of issues surrounding a caregiver’s decision to seek and accept support. It is hoped that the phases identified within this study are useful in depicting how caregivers of people with MS may progress through stages in their desire for, and acceptance of, support. Findings from this study are useful to healthcare professionals who work with people with MS and their caregivers by increasing awareness that a caregiver’s attitude toward and acceptance of support changes over time.

Key Words: caregivers • community networks • delivery of healthcare • health personnel • multiple sclerosis • social support

Multiple Sclerosis, Vol. 10, No. 2, 219-230 (2004)
DOI: 10.1191/1352458504ms1008oa


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