PMID- 20067341
OWN - NLM
STAT- MEDLINE
DCOM- 20100315
LR  - 20151119
IS  - 1751-8431 (Electronic)
IS  - 1751-8423 (Linking)
VI  - 13
IP  - 1
DP  - 2010 Feb
TI  - Living and ageing with spinal muscular atrophy type 2: observations among an 
      unexplored patient population.
PG  - 10-8
LID - 10.3109/17518420903154093 [doi]
AB  - 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.
FAU - Jeppesen, Joergen
AU  - Jeppesen J
AD  - RehabiliteringsCenter for Muskelsvind, Aarhus, Denmark. mail-jeppesen@mail.dk
FAU - Madsen, Anny
AU  - Madsen A
FAU - Marquardt, John
AU  - Marquardt J
FAU - Rahbek, Jes
AU  - Rahbek J
LA  - eng
PT  - Journal Article
PL  - England
TA  - Dev Neurorehabil
JT  - Developmental neurorehabilitation
JID - 101304394
SB  - IM
MH  - Activities of Daily Living
MH  - Adaptation, Psychological
MH  - Adolescent
MH  - Adult
MH  - Age Factors
MH  - Aged
MH  - Aging/*psychology
MH  - Cross-Sectional Studies
MH  - Data Collection
MH  - Denmark
MH  - Female
MH  - Health Status
MH  - Humans
MH  - Interpersonal Relations
MH  - Male
MH  - Middle Aged
MH  - Quality of Life/*psychology
MH  - Sex Factors
MH  - *Social Support
MH  - Spinal Muscular Atrophies of Childhood/*psychology
MH  - Surveys and Questionnaires
EDAT- 2010/01/14 06:00
MHDA- 2010/03/17 06:00
CRDT- 2010/01/14 06:00
PHST- 2010/01/14 06:00 [entrez]
PHST- 2010/01/14 06:00 [pubmed]
PHST- 2010/03/17 06:00 [medline]
AID - 10.3109/17518420903154093 [doi]
PST - ppublish
SO  - Dev Neurorehabil. 2010 Feb;13(1):10-8. doi: 10.3109/17518420903154093.