EXPERIENCES OF SCHOOL-AGED SIBLINGS OF INDIVIDUALS LIVING WITH COMPLEX, CONGENITAL HEART DEFECTS

Abstract

Although some research has examined the experiences of well-siblings of children with chronic health conditions, more research is needed to specifically explore the lived experiences of school-aged well-siblings of individuals living with complex congenital heart defects. Using family systems theoretical framework, this phenomenological study explored the experiences of well-siblings of individuals living with a complex congenital heart defect. Six well-siblings between the ages of 12 years and 17 years shared their experiences through two in-depth, semi-structured interviews. All participants were younger in age than their sibling living with a CHD. Data saturation was achieved. Interview questions explored the daily lives of the participants, perception of their sense of normalcy, their knowledge of their sibling’s heart diagnosis, and their present level of support. Participants also completed questionnaires to gauge their level of health literacy and current symptoms of anxiety (GAD-7) and depression (PHQ-8). Parents of participants completed a demographic questionnaire. Data analysis resulted in three overlapping themes: viewpoint of daily life in the family, understanding of the sibling’s heart diagnosis, and the well-child’s support champions. Findings suggested parents’ differential treatment of well-siblings. Although the participants were younger than the individual with the complex heart defects, results indicated that well-children experienced roles and expectations congruent with an older sibling, such as increased feelings of responsibility and protectiveness over their sibling living with a heart defect. Sibling rivalry and jealousy were also expressed. Well-children reported their parents as being their primary source of social support, with mothers being the first go-to person for information and support. While participants gained support from close friends, they did not want to share information about their sibling’s heart diagnosis with all friends. Notably, participants reported increased worry about adverse health outcomes including the possibility of death of their sibling during the COVID-19 pandemic and followed more restrictions in their social lives to minimize exposures. The results of this study emphasize the importance of including well-children in conversations about their sibling’s heart diagnosis, as well as the need for both professional and personal support systems. Implications for practice include an ongoing need for psychoeducational interventions for well-children and involvement of well-siblings with child life specialists. For parents, this study indicates a need for improved communication with and attention towards well-children during their sibling’s hospitalizations. Future research should examine the perceptions and experiences of adult siblings and siblings who are older in age than their sibling living with a CHD as well as further examine the experiences of well-siblings during the COVID-19 pandemic and the role of friendships in providing support.