Family Planning and the Adult with Congenital Heart Disease: A Narrative Inquiry

Background:Cardiovascular congenital defects affect 1% of all infants born in the United Sates regardless of race (Hoffman & Kaplan, 2002; Xu, Kochanek, & Tejada-Vera, 2009). Cardiovascular congenital defects include both treatable or ultimately fatal structural, and functional heart conditions (Gilboa, Salemi, Nembhard, Fixler & Correa, 2010). Surgical advances in congenital heart disease (CHD) have effectively decreased the overall mortality of the CHD population by 24.1%, permitting infants with CHD to live a longer life and increase the possibility of childbearing (Gilboa et al., 2010; Warnes et al., 2008). The overall decrease in mortality has led to an increased prevalence of adults with CHD. Calculating the prevalence of CHD infants and the likelihood of the infant surviving into adulthood, there is an estimated one million adults living with some form of CHD in the United States (Hoffman, Kaplan, & Liberthson, 2004). Current research focuses on adults with CHD and the physical risks associated with contraception, pregnancy, and childbirth. Family planning issues are not addressed consistently with this population (Sable et al., 2011). Family planning decisions include any decision regarding contraception use, getting pregnant, and birthing.  The adult with CHD has specific concerns regarding family planning including pregnancy, surrogacy, adoption, or sterilization (Kovacs & Verstappen, 2011).  The focus of this presentation will be to describe the personal narrative experience of adult women with CHD, of childbearing age, and their struggle with family planning options. Greater understanding of adult experiences with family planning will be useful in future educational efforts for the adult with CHD and their healthcare providers to enhance clinical patient outcomes.

Methods:Narrative inquiry, guided by the Roy adaptation model, was chosen for this study because it is appropriate to describe the reproductive decisions of adults with CHD. Eligible participants included adults between the ages of 18 and 49 diagnosed with mild, moderate, or severe CHD, living in the United States (US), and English speaking. A single in-depth, semi-structured interview was completed. After transcription of the interview, the researcher, and a consultant with qualitative experience performed structural and thematic analysis. Interviews continued until saturation of themes was obtained.

Results: The final sample included 17 adult females, between 24 and 41 years of age, living in 10 U.S. states. The majority of participants were White, married, and had severe types of CHD. The participants described a continuous struggle with family planning decision that occurred throughout their lives, from becoming sexually active to giving birth.  Participants described experiences regarding several options for family planning including contraception, carrying a pregnancy, surrogacy, adoption, and sterilization.

Conclusions: The findings from the study support the need for more research regarding family planning and information communicated to the adult with CHD, and the effects of pregnancy on the adult with CHD.  These individuals are emotionally attached to having a child. These women and had concerns about social, familial, and spousal expectation even though they were afraid of the potential to have a decrease in physical functioning after pregnancy and childbirth. To maximize the health of the adult with CHD, family planning should be incorporated into primary care.