Families of children with congenital heart disease: A literature review

Heart Lung. 2015 Nov-Dec;44(6):494-511. doi: 10.1016/j.hrtlng.2015.08.005. Epub 2015 Sep 26.


In 2000 and 2002, the National Heart, Lung, and Blood Institute launched two initiatives to encourage treatment innovations and research on children with heart disease and their families. Since then, no systematic reviews have examined the evidence regarding the impacts of having a child with congenital heart disease (CHD) on families. This review synthesized key findings regarding families of children with CHD, critiqued research methods, described what has been done, and provided recommendations for future inquiry. Databases searched included PubMed, CINAHL, Family & Society Studies Worldwide, Women's Studies International, and PsycINFO. The literature search followed the PRISMA guidelines. As a result, ninety-four articles were reviewed. Four major themes were derived: parents' psychological health, family life, parenting challenges, and family-focused interventions. In conclusion, while they found parents having psychological symptoms, researchers did not explore parents' appraisals of what led to their symptoms. Research is needed to explore parents' experiences and expectations.

Keywords: Children; Congenital heart disease; Impacts on family; Parents; Psychological health.

Publication types

  • Research Support, Non-U.S. Gov't
  • Review

MeSH terms

  • Child
  • Family / psychology*
  • Heart Defects, Congenital / psychology*
  • Humans
  • Parenting / psychology*
  • Parents / psychology*