Experiences of quality of life in people with Multiple Sclerosis who are in a wheelchair.
Stine Torp Løkkeberg, Gunnar Thoresen
PMID 34053191WHAT IT FOUND
Six wheelchair users with MS living at home said quality of life depended on managing everyday life and being seen as themselves.
Hope, aids and talking about limits helped; fatigue and people addressing family members instead threatened identity.
Key findings
01Many participants equated quality of life with freedom and independence in everyday life.
02Participants described that being in a wheelchair could threaten identity because they felt overlooked, including when people spoke to family members instead of them.
03Participants adapted by maintaining hope and matching activities to daily energy, especially when fatigue was strong.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for RNs
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What it does not show
Only 6 participants were interviewed, all living at home and using wheelchairs, so the findings may not represent people with MS who live in institutions or need more assistance. Participants were recruited through MS associations and may have been more resourceful or connected than others; the authors say results might differ with different social and economic starting points. The authors describe reaching saturation, but the sample was small and narrow, so transferability is limited. Data were collected in Norway, where the public sector finances health care, so access to aids and services may not apply elsewhere. Transcripts were not returned to participants for comments. Spouses were present in 2 interviews, which may have affected what participants said. Both authors had prior experience with MS through close relatives, although they tried to set this aside.
Declared interests
The authors report no conflicts of interest.
The easy way to misread this
Do not treat these themes as evidence that aids, hope or communication improve quality of life. The study interviewed 6 people about experiences and did not test any intervention.