"There's no acknowledgement of what this does to people": A qualitative exploration of mental health among parents of children with critical congenital heart defects.
Sarah E Woolf-King, Emily Arnold, Sandra Weiss and 1 others
PMID 29345005WHAT IT FOUND
Parents of children with critical CHD described shock, trauma and stress around diagnosis, surgery and coming home.
They wanted peer support, clear communication, and mental health check-ins offered gently when they were ready.
Key findings
01Parents described their child's diagnosis and the hospital stay around the first cardiac surgery as shock, grief and extremely stressful.
02Parents and providers said psychological support was most needed at diagnosis, surgery and the transition home, with peer connection the most commonly suggested support.
03Parents were receptive to mental health check-ins during cardiology care if offered as a menu when ready, while providers raised space, hours and funding barriers.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Single-center study at one US children's hospital, so experiences may not transfer to other settings. Only English-speaking US parents were interviewed, so families facing language, travel or immigration barriers were not represented. No parents of children with single ventricle physiology or needing heart transplant were included, so the most complex CHD experiences may be missing. Only four couples were interviewed, so the study cannot describe effects on parenting relationships. The interviewer was a licensed clinical psychologist and parent of a child with CHD, which may have increased disclosure and socially desirable responses that favored integrated care. Qualitative interviews report experiences and preferences, not tested effects of mental health integration.
The easy way to misread this
Do not conclude that integrated mental health support improves parent or child outcomes. The study reports parents' and providers' experiences and preferences, not a tested intervention.