Swedish parents' experiences of their role in treatment for children with congenital limb reduction deficiency: Decision-making and treatment support.
Lis Sjöberg, Liselotte Hermansson, Helen Lindner and 1 others
PMID 32789897WHAT IT FOUND
Swedish parents of children with congenital limb reduction deficiency described making treatment choices as both expected and uneasy, wanting clinicians to support their decisions rather than make them.
They also carried daily device practice, school coordination, and aftercare duties.
Key findings
01Parents felt responsible for making treatment decisions for their child, but some described anxiety and a wish that a clinician would make the decision.
02Parents wanted clinicians to support their decision-making with honest information and time, and they wanted to make the decision themselves.
03Parents carried daily responsibility for the child's use of assistive devices and also performed unexpected aftercare duties.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
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What it does not show
17 parents were interviewed, so the findings describe experiences rather than a general population. Only 5 of the 17 participants were fathers, so fathers' experiences were not represented equally. Participants were recruited through a family association, so they may have been more motivated than other parents. Interviews did not ask about goal setting, an important part of parent-clinician collaboration. The study was done in Sweden, where treatments and devices are free of charge, so it may not fit settings with different access. Qualitative interviews cannot show whether treatment choices or support practices improve child outcomes.
Declared interests
The authors report no conflicts of interest.
The easy way to misread this
Do not read these themes as evidence that any specific treatment or support model improves child outcomes. The study describes 17 parents' experiences and did not compare treatments or measure outcomes.