Parental experience of anal dilations: Comparing hospital teaching with home implementation using the adapted AHPEQS-parent survey.

BACKGROUND

Parents of children with anorectal malformations (ARM) are taught to perform anal dilations in hospital and then continue the procedure at home for months. How their experience changes across the transition has not been systematically measured. We adapted the AHPEQS-Parent questionnaire to capture parental experience during both phases of care.

METHODS

We conducted a cross-sectional electronic survey of parents of children with ARM who underwent primary repair at a tertiary pediatric centre between 2018 and 2023 and completed both hospital teaching and home implementation of anal dilations. The survey included dilation-specific items and the adapted AHPEQS-Parent, administered separately for the hospital teaching and home implementation phases. Mean scores (1 = Always to 5 = Never; lower scores indicate better experience) were compared using paired t-tests and Cohen's d; a separate item assessed harm/distress, where higher scores indicate more harm.

RESULTS

Of 133 invited families, 53 parents completed both AHPEQS phases (47 unique children). Internal consistency was good to excellent (Cronbach's alpha 0.823 hospital; 0.898 home). Four domains worsened at home: pain control (mean difference +0.51, 95% CI 0.12-0.89), safety and confidence (+0.38, 0.12-0.64), feeling supported (+0.23, 0.06-0.39) and team communication (+0.17, 0.02-0.32). Parents also reported more child harm or emotional distress during home implementation than during hospital teaching (mean 1.26 vs 0.87; mean difference +0.39, 0.09-0.69). Seven domains, including decision involvement and overall quality, remained stable.

CONCLUSION

Parental experience of anal dilations deteriorated when care moved from supervised hospital teaching to home, particularly for pain, perceived safety and confidence, support and team communication. These findings support the need for structured pain control advice, clear escalation pathways and proactive follow-up for families performing anal dilations at home.