Living and ageing with spinal muscular atrophy type 2: observations among an unexplored patient population.

OBJECTIVE: To study conditions of living, participation and diagnostic perceptions in a national population of adult persons with spinal muscular atrophy type 2 (SMA 2). METHODS: A mixed method design combining cross-sectional survey data with personal narratives was chosen. Twenty-nine of 37 patients with SMA 2 aged >or=18 years participated in a semi-structured questionnaire survey and three were selected for in-depth journalistic interviews. Socioeconomic data, activities and personal significance of problems were calculated. Journalistic stories were analysed for constructs of personal diagnostic qualities. RESULTS: Everyone was actively directing their life despite being heavily dependent. Deterioration of physical abilities was a major concern for women. Seventy-six per cent were single, but stated their quality of life as fine. Narratives of living with SMA 2 were associated with positive characteristics, as opposed to the medical diagnostic wording. CONCLUSION: Female coping needs more research. Narrative method complements medical knowledge.

Source : http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?tmpl=NoSidebarfile&db=PubMed&cmd=Retrieve&list_uids=20067341&dopt=Abstract

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