Open AccessSelf-management and independence guidelines for the care of people with spina bifida
Author(s) -
Lynne Romeiser Logan,
Kathleen J. Sawin,
Melissa H. Bellin,
Timothy J. Brei,
Julie Woodward
Publication year - 2020
Publication title -
journal of pediatric rehabilitation medicine
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.277
H-Index - 23
eISSN - 1875-8894
pISSN - 1874-5393
DOI - 10.3233/prm-200734
Subject(s) - spina bifida , independence (probability theory) , self management , psychological intervention , medicine , bowel management , spinal dysraphism , population , psychology , pediatrics , nursing , environmental health , surgery , computer science , constipation , statistics , mathematics , machine learning
Self-management and independence behaviors are associated with improved health conditions common to spina bifida such as skin integrity and bowel and bladder management. While most children with spina bifida ultimately achieve basic self-care behaviors, (e.g., dressing appropriately, planning activities with peers, or cooking pre-planned meals), they often lag 2–5 years behind their typically-developing peers in these activities [1]. Valid and reliable condition-specific assessments of self-management and independence are critical to optimizing outcomes for this population. Partnerships among parents, clinicians, and youths with spina bifida are essential to implementing tailored interventions based on these assessments. The guidelines delineated in this article are informed by current self-management research for people with spina bifida and offer recommendations to promote self-management and independence across the lifespan.