Experiences of parents and/or caretakers of children with Hirschsprung’s disease or anorectal malformations during follow-up after pediatric surgery

Abstract

Introduction: Hirschsprung’s disease and anorectal malformations are pathologies that affect the pediatric population and compromise life from birth, making diagnosis and early treatment essential. The comorbidities they lead to in the long-term take parents and caretakers to situations that, without proper accompaniment, can generate serious complications in the child.
Objective: To describe the meaning of the experiences of parents of children with Hirschsprung’s disease or anorectal malformations who have had surgical treatment and are being followed-up.
Materials and methods: This was a phenomenological qualitative research carried out through interviews with five parents of children with Hirschsprung’s disease and five parents of children with anorectal malformations.
Results: We found common experiences from which the following topics emerged: a) Difficult diagnosis, which involves the feelings and the impact generated by receiving this news; for health personnel it is not always a situation that is identified early; b) treatment: Social isolation due to hospitalizations and the presence of an ostomy, in addition to the channeling of resources for the child at the expense of those of the home; coping skills are required to achieve definitive surgical repair; and c) context: Health institutions may become barriers and health personnel must have more education in this regard; social support networks are necessary.
Conclusion: The experiences reflected that diagnosis, treatment, and context generated great impact on the lives of parents and/or caretakers of children with these pathologies.