Self-management and independence guidelines for the care of people with spina bifida.
Lynne Romeiser Logan, Kathleen J Sawin, Melissa H Bellin and 2 others
PMID 33252094WHAT IT FOUND
Start building self-management and independence in infancy through small daily choices, chores, and condition-care tasks, increasing gradually with family support.
These spina bifida guidelines offer practical steps, not proof that any single approach works.
Key findings
01The guidelines recommend teaching families condition-care skills and setting expectations for eventual self-management and independence beginning in infancy.
02Children with spina bifida may develop self-management behaviors 2-5 years behind peers, but basic self-management is ultimately achieved by most children and may need deliberate practice.
03The guidelines combine 48 studies and expert opinion, but the authors state more research is needed to support and refine community-based programs.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
This is a guideline review, not a trial, so it cannot show that the recommended practices improve independence or health. Many recommendations are labeled clinical consensus rather than evidence. The authors say more research is needed and the most effective developmental steps are unknown. The search initially omitted self-management studies and was supplemented by one author, so the evidence base may not be complete. Instrument recommendations vary in support; some are not validated in spina bifida or have limited psychometric evidence.
Declared interests
The supplied metadata indicates U.S. government Public Health Service research support; no conflict-of-interest declaration appears in the article text.
The easy way to misread this
Do not read these guidelines as evidence that a specific self-management program works. The paper combines published studies with expert opinion, labels many recommendations clinical consensus, and says more research is needed.