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

Not all parents completed every time point: 154 parents at Time 1, 117 at Time 2, and 89 at Time 3, so later results come from fewer parents. The most common reason for missing surveys was that parents felt under too much stress, so the most distressed parents may be undercounted and results may look too positive. All outcomes were parent self-report, and the authors note possible social desirability bias, especially for family function. Parents who could not speak or read English were excluded. The study was observational, so it can show associations but not prove that stress, coping, or nurse-led support causes better or worse outcomes. The sample was specific to complex single-ventricle congenital heart disease and may not apply to families with less complex heart conditions. Postpartum depression was not measured, although mothers were recovering from childbirth at the first time point. The family function measure may underrepresent single-parent families, although the authors say this has not been documented.

The authors declared no potential conflicts of interest. The paper lists NIH and non-U.S. government research support.

Do not read better-than-norm family function as reassurance. Parent quality of life and well-being were lower than healthy and cancer-parent reference groups, and 26% of parent reports across time points indicated family dysfunction.