Outcomes of Congenital Heart Disease: A Review

Angela Green


Pediatr Nurs. 2004;30(4) 

In This Article

Marriage, Reproduction, and Family Impact

Researchers in the early 1990s reported that adults with CHD were less likely than other adults to be married or cohabitating with a significant other and more likely to be living with parents (Kokkonen & Paavilainen, 1992). However, Simko and McGiinnis (2003) recently reported finding no significant differences between adults with CHD and healthy controls in regard to marital status and living with parents.

Pregnancy is not contraindicated in women with CHD, but is associated with increased risk for some patients (Siu, Chitayat, & Webb, 1999). Risk factors for complications include poor maternal functional class, cyanosis, left ventricular outflow tract obstruction, poorly controlled dysrhythmias, and myocardial dysfunction (Foster et al., 2001; Siu et al., 1999). However, unless associated with Eisenmenger syndrome (right to left shunting due to pulmonary hypertension), pregnancy has been associated with low mortality. Many defects have an increased recurrence risk in offspring of affected individuals. Thus, genetic assessment and reproductive counseling have been recommended for men and women with CHD (Siu et al., 1999). Horner et al. (2000) found that reproductive concerns in adults with CHD include concerns about survival to raise offspring and fear of having a child with CHD.

Despite the fact that CHD is the second most prevalent chronic illness in childhood (Tak & McCubbin, 2002), little research has examined the family impact of CHD. Most children are diagnosed in the perinatal period or in early infancy and, thus, families must concurrently deal with the stress of a normative transition (new family member) and the stress of the diagnosis of a chronic illness. Caregiving demands are very high, especially in the early stages of illness (Tak & McCubbin, 2002). Caregiving issues identified in the literature include difficulties with nutrition and feedings and intensive medication regimens (Morelius, Lundh, & Nelson, 2002). Parents have identified psychological stress as their most significant problem (Samanek, 2000). Diagnostic procedures, medical and surgical interventions, perception of the child as "different," social problems, sports restrictions, uncertainty, and disease prognosis have also been identified as sources of stress (Gudmundsdottir et al., 1996; Morelius et al., 2002; Tak & McCubbin, 2002). Among parents of adolescents and young adults, a 1997 study reported that issues related to the perception of their offspring as different persisted. Additional concerns were related to decisions about disclosure of the diagnosis and transitioning offspring to self-management of the chronic illness (Sparacino et al., 1997).

Despite the difficulties, however, many families adapt successfully (Tak & McCubbin, 2002). The most recent study, from 1995, indicated that half of families of adolescents with severe CHD report no or minor chronic difficulties. However, of those who reported moderate to severe family problems, somatic and mental health problems in parents or siblings and/or family conflicts were common (Bjornstad et al., 1995). In an Eastern European study, 1.2% of mothers dropped out of educational programs, and 34.2% either changed jobs or decreased work hours (Samanek, 2000).


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