Challenges and coping between parents in shared decision-making for children with complex, life-threatening conditions: A qualitative content analysis.
Heeyeon Son, Tolu O Oyesanya, Debra Brandon and 1 others
PMID 37516648WHAT IT FOUND
Parents of seriously ill infants often could not talk together in time, and some hid frightening news from a spouse.
They coped by acknowledging each other, working together, or letting the parent with more medical knowledge or experience lead.
Key findings
01Parents said urgent treatment schedules and physical separation left them too little time to talk together, interrupting shared decisions.
02Parents described fear and guilt about their child's limited lifetime or possible death, which made it hard to share emotions with each other.
03Some parents coped by having one partner take a leadership role, based on information-gathering, quick thinking, medical knowledge, or emotional capacity rather than gender.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
This was a secondary analysis of interviews collected to study parent and provider decision-making, not specifically the parental coping questions asked here. Only enrollment interviews were used, so it captures one time point and not changes over the illness trajectory. The sample was 20 couples from one U.S. academic medical center, English-speaking, and limited to congenital heart disease or genetic or metabolic disorders requiring hematopoietic stem cell transplant, so it may not fit other families or conditions. Data were collected from 2008 to 2011, so the clinical setting and family supports may differ now. No provider interviews were included in this analysis, so it describes only the parent side of shared decision-making.
Declared interests
The authors declared no conflict of interest.
The easy way to misread this
Do not conclude that written information, family conferences, or asking parents about withheld news improves shared decision-making. This qualitative study reports parents' experiences and authors' suggestions, not tested interventions.