Parents' Experiences and Information Needs While Caring for a Child With Functional Constipation: A Systematic Review

Abstract

Pediatric functional constipation (FC) reportedly affects at least 1 in 10 children worldwide. Parent and family education is a key component for successful treatment, yet there is little research exploring what information families need and how to best support them. The aim of this review is to synthesize current evidence on the experiences and information needs of parents caring for a child with FC. We systematically searched published research and completed screening against a priori inclusion criteria. Thirteen studies (n = 10 quantitative, n = 3 qualitative) were included. We found 2 main themes, precarious footing and profound and pervasive effects. Heavy caregiving burdens fueled doubts, misinformation, relationship breakdown, and treatment deviation. In light of clinical recommendations, our findings reveal a potential mismatch between parents' needs and care provision for FC. It is likely that both parents and health care providers would benefit from resources and interventions to improve care related to pediatric FC.

Keywords: constipation; experience; information needs; parents; pediatric.