Background: Survival rates for children with congenital heart disease have increased. However, many of these children are now living with increased co-morbidities. Contemporary healthcare promotes home care, and this is being provided by children’s families. Siblings of children with congenital heart disease are often unintentionally overlooked in research and family centred care strategies. Having a sibling with congenital heart disease affects siblings too, the extent and perceived impact remain unknown.
Aim: To explore perceived impact on children and young people of having a sibling with congenital heart disease.
Methods: Guided by a family advisory group and Bronfenbrenner’s bio-ecological systems theory, a mixed methods sequential exploratory study design was used for this exploratory research and integrated findings are reported. The population was children and young people who had a brother/sister with congenital heart disease, aged 8-17 years old, living in the UK. Phase one involved virtual semi-structured interviews (n=17) exploring experiences. The Pictorial Representation of Self and Illness tool was used to allow visual demonstration of perceived impact. Phase one data were analysed using reflexive thematic analysis. Phase two involved questionnaires (n=52) in which Resilience, Interpersonal perceptions, Intrapersonal relationships, Fear and Communication were measured using two validated scales, the Sibling Perception Questionnaire and Child and Youth Resilience Measure.
Results: Five themes were identified from phase one: My life looks different, Always you before me, My role in our family, Effects on me and moving forward and How COVID-19 changed things for me. In phase two high levels of resilience were demonstrated but communication, intrapersonal perception and intrapersonal relationships could be strengthened and level of fear about the illness could be reduced to improve outcomes. Integrated findings suggest relationships, peer support, communication, information, and inclusion of siblings at home and in hospital were vital recommendations for practice.
Contribution to knowledge: This is the first study to utilise a mixed methods design and Bronfenbrenner’s bio-ecological systems theory to gain a holistic view of the perceived impact on siblings of having a brother or sister with congenital heart disease, from a sibling’s perspective. Virtual interviews and online questionnaires helped to gain a broad understanding of the ever-evolving landscape of perceived impact. Whilst findings suggest this population group are generally resilient, interventions focusing on maintaining resilience and supporting positive relationships, communication and inclusion should be developed to support siblings throughout their life course.