A beautiful struggle: Parent-perceived impact of short bowel syndrome on child and family wellbeing
jpedsurg.org shows its articles on its own site.
Read the article on jpedsurg.org ↗Article · Oct 2021 · 1 min read
In brief
In brief
This study examined parent-perceived quality of life for children with short bowel syndrome using validated tools, finding that most parents view their child's wellbeing as better than initially expected and report fairly normal family functioning. Involvement with intestinal rehabilitation programs was associated with improved outcomes across multiple domains, and many parents reported personal growth from managing their child's condition.
Written by the GCMD Library team from the article.
Background
: Despite considerable improvements in outcomes for children with short bowel syndrome (SBS), many clinicians remain pessimistic about long-term quality of life (QoL) for this population.
Methods
: The validated FaMM tool was used to measure parent-perceived impact of the child's condition on child and family life. Partnered disease-specific survey questions relevant to child's overall wellbeing and family function were additionally completed and reported. The cross-sectional surveys were distributed to a convenience sample of parents of children with SBS. Child and family wellbeing were described and compared across child age group and involvement of an intestinal rehabilitation program (IRP). Multivariate regression analyses investigated associations between outcomes and IRP management. Open-ended responses were analyzed to investigate perceived impact of the child's SBS on the parent.
Results
: Seventeen parents completed both surveys; 71% perceived child QoL as higher today than what they had originally been told to expect. Child daily life and family difficulty scores suggest parents perceived both to be fairly "normal". While acknowledging effort invested in condition management, parents perceived high competence in managing their child's condition; 56% perceived personal growth resulting from their child's SBS journey. IRP management was associated with better child daily life (4.11, p=0.015), family difficulty (-4.85, p=0.048), and family management ability (4.28, p=0.014) scores.
Conclusions
: Many parents perceive child and family life with SBS to be fairly "normal", manage their child's care with great competence, and report personal growth because of their child's SBS journey. Additional research inclusive of diverse patient and parent backgrounds is warranted.