Purpose: Little attention has been put to parental self-efficacy (PSE) on the home care management and its impact on the health-related outcome in children with Hirschsprung disease (HD) after surgery. The purpose of this study was to investigate the association between PSE and post-operative outcome and quality of life (QoL) in children with HD.
Design and methods: This study adopted a cross-sectional study design. Children diagnosed with HD who had surgery during 2015 and 2018, and their parents were included. Parental self-efficacy, children's post-operative fecal continence and QoL were evaluated with validated questionnaires; post-operative readmission and adverse events were extracted from electronic medical record system.
Results: Of the eligible families, 69.6% (96/138) responded to the follow-up. The median children's age at surgery and current age were 16 (interquartile range: 10-32) and 45 (interquartile range: 39.7-57) months, respectively. The mean PSE score is 8.78 points, with the lowest score in the bowel habit training dimension (7.88 ± 2.28), followed by getting social support dimension (8.07 ± 2.64). Multivariable linear regression showed that PSE was associated with fecal continence (β = 0.043, 95% CI 0.013-0.072), pediatric QoL total score (β = 0.210, 95% CI 0.011-0.409) and social score (β = 0.273, 95% CI 0.022-0.525). No associations were observed between PSE and weight z-score, height z-score, readmission or adverse events.
Conclusions: PSE is correlated with fecal continence and QoL of children with HD.
Practice implications: PSE should be considered when designing a parental education program, with the focus on bowel habit training and getting social support.
Keywords: Health-related outcome; Hirschsprung disease; Parental self-efficacy; Quality of life.
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