Understanding Parents’ Experiences and Information Needs to Inform a Digital Knowledge Translation Tool about Pediatric Functional Constipation

  • Author / Creator
    Thompson, Alison Paige
  • Background: Functional constipation is very common and has devastating effects on the physical, psychological, social, and financial well-being of children and families, while also inflating costs and healthcare resource use. Adequate clinical care for this difficult condition is lacking and treatment outcomes are often insufficient to prevent lifelong constipation. Although parents are key stakeholders in treatment, there are limited resources available and little evidence to pinpoint what information will meet parents needs and accurately reflect their experiences. Therefore, finding innovative ways to support families living with pediatric functional constipation can make a positive contribution towards improving care. Specifically, patient-direct knowledge translation has the potential to increase knowledge, improve experiences, optimize health resource use, and encourage effective health behaviours. In addition, the integration of patient engagement methods in research can enhance relevance and recognize patients as valuable contributors to knowledge development.

    Purpose: The overarching purpose of this dissertation is to contribute towards improving care for children and families affected by pediatric functional constipation. The step-wise objectives of the research are to: i) identify and synthesize existing evidence about parents’ experiences and information needs related to pediatric functional constipation; ii) explore in-depth parents' experience and information needs caring for a child with functional constipation; iii) collaborate with parents to create a novel knowledge translation tool that integrates best evidence with parental perspectives; iv) assess usability of the knowledge translation tool amongst parents in real-life context
    Methods: This dissertation consists of a knowledge translation tool and four related papers: (i) a systematic review of research evidence about parents’ experiences and information needs caring for a child with functional constipation; (ii) a qualitative study using interpretive description methodology to explore the experiences and information needs of parents related to pediatric functional constipation; (iii) a study protocol for the evaluation of the patient engagement process in child health research; and (iv) a descriptive study of the development and usability testing of the knowledge translation tool.
    Findings: Results from the systematic review demonstrate that research specifically exploring parents’ experiences with pediatric functional constipation is scarce and insufficient to meaningfully inform improvements in practice. The qualitative inquiry reveals that parents have significant unmet needs for information and support related to pediatric functional constipation, including validation and recognition of extreme caregiver burden for the condition, physiology of the condition, pathophysiology of soiling, safety and use of medications, and greater understanding of treatment goals and duration. Both the systematic review and qualitative inquiry findings also highlighted the need for improved resources for healthcare providers and consideration of alternative models of care delivery to better meet parents’ needs. These results contributed to the development of a knowledge translation tool for parents. Usability testing of the tool with parents in a real-life context was overwhelmingly positive, citing ease of use and clarity of information as strengths.

    Conclusions: This dissertation provides a comprehensive understanding of parents’ experiences and information needs when caring for a child with functional constipation. In addition to developing knowledge, this research led to the creation of an enduring, patient-direct knowledge translation tool for parents. The development of practice relevant knowledge and a novel resource for parents are substantive contributions to the field of pediatric functional constipation, with implications for patient engagement and knowledge translation science. The research findings, methodological, and practical contributions of this dissertation have the potential to improve health outcomes for patients and families while also creating a foundation for future research.

  • Subjects / Keywords
  • Graduation date
    Fall 2021
  • Type of Item
  • Degree
    Doctor of Philosophy
  • DOI
  • License
    This thesis is made available by the University of Alberta Libraries with permission of the copyright owner solely for non-commercial purposes. This thesis, or any portion thereof, may not otherwise be copied or reproduced without the written consent of the copyright owner, except to the extent permitted by Canadian copyright law.