Experiences and expectations of parents when young people with congenital heart disease transfer from pediatric to adult care: A qualitative systematic review

Abstract

Parents encounter challenges when their child with congenital heart disease is transferred from pediatric to adult care. Until recently these parents’ experiences and expectations of their child’s transfer have received less attention. This systematic review aims to identify and synthesize qualitative evidence on parental experiences and expectations about their child’s transfer from pediatric to adult care using a meta-aggregation approach. Six studies were included with 39 findings being aggregated into seven categories. Three syntheses were formed: Information is a prerequisite for supporting young people’s transfer. The transition process should be well-prepared, individualized, and based on young people’s maturity. Changing parental roles causes ambivalent feelings requiring support in the transfer process. Parents regard transfer from pediatric to adult care as a natural developmental step. However, some parents are anxious and worried while others found the transfer as feasible as other transitions in their child’s life. Involving parents in the transition process enables them to facilitate their child’s transfer. Parents worry their child is too young to take responsibility for their health. Parental roles from being a full caregiver to becoming a supportive person cause ambivalent feelings. These findings align with research on parents’ experiences of young people with long-term conditions.