Adaptive Leadership in Parents Caring for their Children Born with Life-Threatening Conditions.
Anne C McKechnie, Kathy A Johnson, Maureen J Baker and 3 others
PMID 32438191WHAT IT FOUND
Parents of children born with life-threatening conditions described moving from managing their own distress and uncertainty to coordinating care and prompting others to adapt.
Some became active partners with clinicians; others did not.
Key findings
01Parents’ self-focused adaptive work involved building emotional and physical stamina, regulating fear and uncertainty, and sometimes postponing distressing topics until later.
02Parents’ interpersonal adaptive work involved balancing hospital, home, and work demands, changing roles or employment, and trying to see the child as both ordinary and extraordinary.
03Some parents persisted in addressing healthcare providers’ practices and decision-making, but not all parents took on adaptive leadership activities.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Participants chose to take part in the original and follow-up studies. Only about one-third of the original participants were retained for follow-up. Conceptual saturation might not have been reached. The sample was primarily white and heterosexual, and some under-represented groups were not retained. Couples built a shared narrative, which could have been shaped by social desirability. Mothers spoke more explicitly than fathers, and recall bias was possible.
The easy way to misread this
Do not read this as evidence that a program improves parent or child outcomes. It is a qualitative follow-up interview study, and not all parents described adaptive leadership.