An examination of the psychosocial consequences experienced by children and adolescents living with congenital heart disease and their primary caregivers: A scoping review protocol

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. A knowledge synthesis including all study designs is yet to be completed mapping the current state of knowledge and research activity with regards to the negative psychosocial consequences experienced by children and adolescents living with CHD and their primary caregivers in high income countries. A synthesis of interventions aimed at decreasing these consequences for these two populations in high income countries has also not been completed. The objectives of this scoping review are to 1) determine the current state of knowledge on negative psychosocial consequences experienced by children and adolescents living with CHD and their primary caregivers in high-income countries, and 2) inform research aimed at developing interventions in high-income countries to decrease the negative psychosocial consequences experienced by children and adolescents living with CHD and their primary caregivers. Methods: Databases and grey literature searched will include MEDLINE, CINAHL, EMBASE, PsycINFO, CENTRAL, Scopus, ProQuest Theses and Dissertations, and Google advanced search. Citation mining of included studies and relevant review articles in the review will be completed. Studies will be screened by title and abstract and then full text by two independent reviewers, using pre-defined inclusion and exclusion criteria. Quality analysis will be conducted on all included studies by two reviewers using MMAT Version 2018. Studies will not be excluded due to quality assessment. Data from all eligible studies will be independently extracted by the two reviewers and verified by consensus. Arksey and O’Malley’s (2005) framework will be used to guide synthesis of extracted data. The data will be presented and synthesized in evidence tables to examine potential patterns. Results: The results of this review will provide recognition of the psychosocial impact of CHD and its treatments on children and adolescents living with CHD and their primary caregivers. It will also highlight interventions that have been developed to decrease these psychosocial consequences. The results from this review will inform a future integrated knowledge translation study by the first author aimed at decreasing one or more of the negative psychosocial consequences experienced by children or adolescents living with CHD and their primary caregivers. Conclusion: Recognition of the negative psychosocial consequences experienced by children and adolescents living with CHD and their primary caregivers is an essential part of caring for this population and their families. Interventions are needed to reduce these outcomes for both children and adolescents living with CHD and their families.