JMIR Publications

ABSTRACT

Background:

Pediatric functional constipation (FC) is a common but serious medical condition. Despite significant effects on children, families, and the healthcare system, the condition is typically undertreated. Parents bear primary responsibility for complex treatment programs; therefore, understanding their experiences and needs may offer a critical perspective towards improving clinical care.

Objective:

The initial aim of this study was to understand and give voice to parents’ experiences and information needs when caring for a child with FC. The ultimate objective was to build an evidence base suitable for creating a digital Knowledge Translation tool to better support parents caring for a child with FC.

Methods:

This qualitative design used Interpretive Descriptive methodology to generate findings aimed towards improving clinical care. One-on-one, in-depth interviews were completed either in-person or via online teleconferencing to explore parents’ perspectives. Data collection and analysis occurred concurrently.

Results:

Analysis of sixteen interviews generated four major themes; 1) living in the shadows, 2) not taken seriously - with a subtheme of 2a) persevering and advocating, 3) missing information and misinformation, 4) self-doubt and strained relationships. One minor theme of affirmative influences foster resilience and hope was identified.

Conclusions:

Parents have significant unmet needs for support and information related to pediatric FC. To address gaps in current care provision, decision-makers may consider interventions for clinicians, resources for parents, and shifting care models to better meet parents’ needs.