ArticlePediatric surgery international2024
Experiences of youth growing up with anorectal malformation or Hirschsprung's disease: a multicenter qualitative in-depth interview study.
Article in Pediatric surgery international, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed.
- Precision minimally invasive strategy for Hirschsprung's disease: from anatomical resection to whole-cycle functional management-a review.Frontiers in pediatrics · 2026Review
- Gender differences in self-reported quality of life and bowel function among patients with anorectal malformation and Hirschsprung's disease compared to a healthy population: a multicenter cross-sectional study.Pediatric surgery international · 2025Article
- Hirschsprung Disease: The Role of the Clinical Nurse Specialist.Children (Basel, Switzerland) · 2024Article
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Authors and funding
9 authors.
Funding
Abstract
purposePatients with anorectal malformation (ARM) and Hirschsprung's disease (HD) live with long-term impact of these diseases even into adulthood. We aimed to explore the physical, social and emotional impact of these diseases in adolescents and young adults to develop best practices for transition care.
methodsWe conducted one-on-one in-depth interviews with ARM and HD patients aged ≥ 11 years who had undergone surgery at four tertiary referral centers. All interviews were audio-recorded and transcribed verbatim. We analyzed transcripts for recurring themes, and data were collected until data saturation was reached. Three researchers independently coded the transcripts for major themes using thematic analysis approach.
resultsWe interviewed 16 participants (11 males) between October 2022 and April 2023. Ages ranged from 11 to 26 years. Five major themes emerged: (1) personal impact (subthemes: physical, emotional and mental health, social, school), (2) impact on family, (3) perceptions of their future (subthemes: relationships, career, state of health), (4) sources of support (subthemes: family, peers, partner), and (5) transition care (subthemes: concerns, expectations). Only females expressed concerns regarding future fertility.
conclusionThis study highlights the evolving problems faced by adolescents and young adults with ARM and HD, especially gender-specific concerns. Our findings can inform efforts to provide individualized care.
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