Parents’ Perceptions of Emerging Adults With Congenital Heart Disease: An Integrative Review of Qualitative Studies

Abstract Background As the primary caregivers for children with congenital heart disease (CHD), parents' perceptions are important for emerging adults to achieve independence. This integrative review of qualitative studies aimed to describe parents' perceptions of emerging adults with CHD. Method Seven electronic databases were searched. Data extraction and quality assessment were performed. A meta-synthesis was conducted to inductively develop essential themes from five included studies. Results Three essential themes encompassing the parents' perspective of emerging adults with CHD were: (1) concerns about emerging adults' ability to be independent; (2) concerns about emerging adults' future; and (3) impact of disease on family. The themes depicted parents' concerns and worries about their children's ability to successfully achieve independence, especially in disease self-management and life goals. Discussion This review highlights parents' concerns about their emerging adult children's independence. Understanding these concerns allows for developing interventions to facilitate emerging adults' independence and ease parents' worries.