Introduction: Congenital heart diseases are the most common type of congenital disorders in children, imposing a caregiving burden and psychological pressure on the entire family, consequently affecting the quality of life for parents. Given that parents are the primary caregivers for children, and most of the caregiving activities take place at home, identifying interventions that enhance the quality of life for parents is essential.
Methods: In this scoping review, guided by the five-stage Arksey and O'Malley framework and the PRISMA-ScR checklist, a comprehensive search for relevant articles was conducted across databases, including SID, MagIran, PubMed, Scopus, and Web of Science, without time restrictions. The search utilized keywords such as 'Quality of Life,' 'Congenital heart disease,' and 'Parents,' along with their Persian equivalents.
Results: In the initial search, a total of 207 articles were retrieved. After removing duplicates, 145 articles remained. Considering inclusion and exclusion criteria and reviewing the titles and abstracts of the remaining articles, a final set of 6 articles was included in the study. The types of interventions in the remaining articles included remote health monitoring, in-person or virtual education and follow-up, and psychosocial support-based interventions. The minimum and maximum sample sizes in the studies were 56 and 219, respectively. The assessment tools for quality of life included the short-form version of the 36-item Quality of Life questionnaire (SF-36), the brief version of the World Health Organization Quality of Life questionnaire (WHOQOL-BREF), and the Ulm Quality of Life Inventory for Parents questionnaire (ULQIE). The majority of the studies were effective in improving the quality of life for parents. Virtual education and follow-up, conducted through messaging applications such as WhatsApp, or in-person educational sessions, were found to be effective in enhancing the quality of life for parents. However, one study, involving psychosocial support post-childbirth and before surgery, did not result in an improvement in the quality of life of parents. In another study, employing remote health monitoring along with education and follow-up via email, SMS, phone calls, or video, did not lead to an enhancement in parental quality of life.
Discussion and Conclusion: The examination of previous study results indicates that, in designing interventions aimed at improving the quality of life for parents, attention to the educational content is prioritized, and the inclusion of adaptive and coping strategies is essential. It is preferable to initiate interventions with a psychosocial support approach before surgery. Overall, there is a lack of diversity in studies aimed at improving the quality of life for parents of children with congenital heart disease, with the majority focusing on education and follow-up. Given that high stress is a major source of low quality of life in parents of children with congenital heart disease, researchers are recommended to explore the effectiveness of innovative interventions in future studies, including psychological measures such as mindfulness exercises and psychotherapies, to enhance parental quality of life.