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

Dev Neurorehabil. 2010 Feb;13(1):10-8. doi: 10.3109/17518420903154093.

Abstract

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.

MeSH terms

  • Activities of Daily Living
  • Adaptation, Psychological
  • Adolescent
  • Adult
  • Age Factors
  • Aged
  • Aging / psychology*
  • Cross-Sectional Studies
  • Data Collection
  • Denmark
  • Female
  • Health Status
  • Humans
  • Interpersonal Relations
  • Male
  • Middle Aged
  • Quality of Life / psychology*
  • Sex Factors
  • Social Support*
  • Spinal Muscular Atrophies of Childhood / psychology*
  • Surveys and Questionnaires