The development of a knowledge translation tool addressing the psychosocial health of children and adolescents living with congenital heart disease and their primary caregivers
Introduction: The chronicity of congenital heart disease (CHD) comes with significant psychosocial consequences for both children and adolescents living with CHD and their primary caregivers. Children and adolescents living with CHD undergo multiple traumatizing invasive surgical and medical procedures, struggle with disabilities resulting from their CHD, face unfair scrutiny and marginalization, and are at risk for mental health issues. Primary caregivers of children and adolescents living with CHD deal with increased stress, fear, anxiety, depression, and financial burden. The objective of this research is to develop a parental knowledge translation (KT) tool which creates an awareness of the potential psychosocial consequences faced by children and adolescents living with CHD and their primary caregivers and available interventions and strategies to help mitigate these consequences. Methods: This research is multi-phased with the results of one phase informing the next. In phase 1, Arksey & O’Malley’s framework will be used to conduct a scoping review to determine: the negative psychosocial consequences experienced by children and adolescents living with CHD and/or their primary caregivers; factors contributing to the development of these consequences; and available interventions to help decrease these consequences. Studies will be screened by two independent reviewers by title and abstract and then full text against predefined inclusion and exclusion criteria. Quality analysis will be conducted on all included studies. Data (e.g., study design, intervention type, outcomes, etc.) from all eligible studies will be extracted and synthesized into evidence tables to examine potential patterns. In phase 2, an integrated KT approach will be used to explore the negative psychosocial consequences experienced by children and adolescents living with CHD and/or their primary caregivers and factors contributing to the development of these consequences. A mixed methods approach (i.e., semi-structured interviews and surveys) will be used to create an in-depth description of the experiences and information needs of primary caregivers of children or adolescents living with CHD. Thematic analysis will be used to analyze qualitative data and bivariate and multivariate statistical analysis will be used to analyze quantitative data. Results: The results from phase 1 and 2 will be used to co-create a KT intervention (e.g., arts-based video) with parents of children living with CHD on the Stollery Children’s Hospital Pediatric Cardiology Family Centered Care Team. In phase 3, the usability of the KT intervention will be evaluated using a Likert survey. Caregivers of a child living with CHD will be surveyed and bivariate and multivariate statistical analyses will be conducted. Conclusion: Developing a KT tool with its end-users (i.e., parents of children living with CHD) will increase the likelihood that the tool developed is easy to understand and useable for the target population. The purpose of this KT intervention is to provide caregivers of children and adolescents living with CHD with the knowledge and strategies they may need to navigate the psychosocial consequences the child or family may face daily due the CHD and its treatments.