The Development and Evaluation of a Knowledge Translation Tool for Caregivers of Children with Heart Failure

• Author / Creator

  Cunningham, Chentel R

• Background: Having a child diagnosed with pediatric heart failure (PHF) is an anxiety-provoking experience for caregivers due to its high morbidity and mortality. PHF can follow a more chronic trajectory (e.g., cardiomyopathy, neuromuscular disease, myocarditis, etc.) when children who have exhausted or have limited surgical options experience lifelong burdensome symptoms. With advancements in clinical management, children are now surviving and being
  discharged home. Thus, the focus has shifted from mere survival to day-to-day disease management and quality of life. For a child to be safely discharged home, caregivers need to
  acquire, understand and apply complex information about their child’s heart failure. Daily decision-making about their care largely rests on caregivers in the home and can affect the
  child’s outcome. Empowering caregivers in this context with relevant and understandable health research through targeted knowledge translation strategies will have better knowledge uptake, improve day-to-day management (decision-making) and experience less stress. These elements also reduce stress on the healthcare system. Currently, little is known about caregivers’ information needs, experiences and preferred platforms.
  Purpose: Guided by the Knowledge to Action Framework, this research utilized a multi-phase process to develop and evaluate a caregiver-targeted knowledge translation tool about PHF to enhance knowledge uptake about their child’s health condition. The four aims were: 1) Identify and evaluate online caregiver-targeted PHF educational KT tools to understand gaps in current online education; 2) Examine what currently published knowledge and gaps exist about caregiver’s information needs and lived experience; 3) Understand what lived experience and learning needs through qualitative interviews; and 4) Develop, refine and disseminate a digital educational tool for caregivers about their child’s PHF informed by research stages 1 and 2, medical guidelines and substantive expert opinion.
  Methods: Four research approaches: 1) Environmental Scan, 2) Qualitative Evidence Synthesis (QES), 3) Qualitative Description (QD) and 4) Usability and Knowledge Acquisition Testing.
  Results:
  1) Phase 1. ES: Findings revealed no apps and few online tools for caregivers (n=17), with resources scoring in the superior literacy range. This study identified gaps and features
  that informed the creation of the final knowledge translation tool that targeted caregiver audiences (e.g., plain English, improved graphics, relevant reading level).
  2) Phase 2a. QES: One article met the inclusion criteria, highlighting the limited qualitative knowledge used to inform previous educational strategies in the clinical setting. These
  findings emphasize that caregiver education is primarily based on a combination of healthcare practitioner perception, limited input from caregiver groups, and a lack of research evidence.
  3) Phase 2b: QD Interviews: This study’s findings highlight caregivers’ learning needs and experiences caring for a child with heart failure. The coding of 11 caregiver interviews
  shaped two main categories (a traumatic diagnosis of heart failure influences learning and a new reality for life going forward).
  4) Phase 3: Development, Evaluation, and Refinement of a Knowledge Translation Tool.
  From the subsequent two phases of research about caregiver experiences and learning needs, medical guidelines and substantive expert opinion, we created and evaluated a
  knowledge translation tool for caregivers of a child with PHF. This resulted in a highly rated educational tool for caregiver audiences, demonstrating a predominant knowledge
  improvement and requiring minimal refinements.
  Conclusions: The findings from this research identified and addressed significant knowledge gaps about existing chronic PHF educational tools and previously published
  literature. Caregivers’ lived experiences and learning needs were also explored. These phases informed the development of a patient-targeted online educational tool about PHF, along with the most recent evidence-based care recommendations and substantive expert opinion. With collaboration from a graphic designer, this research informed the development of an online infographic into more understandable formats for caregiver audiences to learn about their child’s disease, reduce stress and provide research-informed care

• Subjects / Keywords

  • pediatric
  • heart failure
  • nursing
  • qualitative
  • caregivers

• Graduation date

  Fall 2024

• Type of Item

  Thesis

• Degree

  Doctor of Philosophy

• DOI

  https://doi.org/10.7939/r3-9bw3-vy44

• License

  This thesis is made available by the University of Alberta Library 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.