Title

Identifying Needs, Challenges, and Benefits Among Adults and Parents of Children With Hirschsprung Disease.

Document Type

Article

Publication Date

5-1-2022

Identifier

DOI: 10.1097/MPG.0000000000003411

Abstract

ABSTRACT: Adults with Hirschsprung disease (HD), unaffected parents of children with HD, and affected adults with an affected child completed a cross-sectional survey with open-ended questions about greatest needs at diagnosis and at current time, greatest challenges encountered, and any benefits of having HD or having a child with HD. In the 297 respondents, information and good medical care were common needs at diagnosis and at the time of survey, but the information needed evolved with time. Managing ongoing symptoms was a frequently cited need and challenge, along with managing medical care and the social and emotional impact of HD. Perceived benefits included empathy for others and new perspectives on life. The needs and challenges identified in this study can guide healthcare providers in discussions with families. Provision of information, recommendations, and referrals based on each individual family's needs can support families with HD throughout the lifecycle and facilitate adaptation.

Journal Title

Journal of pediatric gastroenterology and nutrition

Volume

74

Issue

5

First Page

103

Last Page

108

MeSH Keywords

Adult; Child; Cross-Sectional Studies; Family; Hirschsprung Disease; Humans; Parents; Surveys and Questionnaires

Keywords

Family; Hirschsprung Disease; Parents; Surveys and Questionnaires

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