Family Function, Quality of Life, and Well-Being in Parents of Infants With Hypoplastic Left Heart Syndrome

Abstract

Survival for hypoplastic left heart syndrome (HLHS) has improved dramatically. Little is known about early family function, quality of life (QOL), or well-being/adjustment for parents of infants with HLHS. Parent/family outcomes over time, predictors, and differences in 143 mothers and 72 fathers were examined. Parents reported better family function compared with published norms, but 26% experienced family dysfunction. QOL and well-being were significantly lower than adult norms. QOL scores generally declined over time, whereas self-reported well-being improved. Responses from mothers and fathers showed different trends, with mothers having worse scores on most measures and at most time points. Being a single parent was a risk factor for poorer family function, but not for lower individual QOL or well-being. Family characteristics, stress, and coping skills were predictive of outcomes. Parents' psychosocial responses to the challenges of life with infants with HLHS change over time. Individually tailored psychosocial support is needed.

Keywords: congenital heart disease; family; quality of life; well-being.

Figure 1.

Family adaptation to the diagnosis of congenital heart disease in a newborn child.

Figure 2.. Outcomes of mothers and fathers over time. (A) Family function scores over time. (B) Quality of life scores over time. (C) Well-being scores over time.

Note. Repeated measures mixed model regressions compared mean (SEM) scores for each outcome between mothers and fathers, and over time. Family function was assessed using the general functioning scale of the FAD (Miller et al., 1985), where lower scores are better. No significant differences were found between parents at any time point or overall; however, mothers’ FAD scores worsened from Time 1 to Times 2 and 3 (p = .017), whereas fathers’ scores did not significantly change over time. Quality of life was assessed using the PQoL Scale (Patrick et al., 2000), where higher scores are better. Fathers had a significantly higher PQoL Scale score than mothers at Time 1 (β = 0.63, p = .02), but no differences were found between parents at other time points. For both parents, reported QOL decreased from Time 1 to Time 2 (mothers: β = −0.39, p = .047; fathers: β = −0.82, p < .01), but there were no differences between Time 2 and Time 3 for either parent. Well-being was assessed using the FMWB, where higher scores are better. Fathers had a significantly higher FMWB score than mothers at Time 1 (β = 7.1, p .0001), but no differences were found between parents at other time points. Mothers reported improved well-being at both Time 2 (β = 3.6, p .0001) and Time 3 (β = 8.9, p < .0001) compared with Time 1, while fathers’ well-being was better at Time 3 compared with Time 1 (β = 6.5, p < .01) but did not differ from Time 1 to Time 2. Number participating: Time 1: 104 mothers, 50 fathers. Time 2: 78 mothers, 39 fathers. Time 3: 62 mothers, 27 fathers. FAD = Family Assessment Device; SEM = standard error of the mean; PQoL = Perceived Quality of Life; FMWB = Family Member Well-Being Index.