"I Am Forever Changed": A Phenomenological Study of the Existential Experiences of Parents of Children and Young People With Complex Care Needs.
Carina Nygård, Anne Clancy, Gabriele Kitzmüller
PMID 39355997WHAT IT FOUND
Parents of children with complex care needs described constant vigilance, guilt, exhaustion and loss of self.
They valued nurses who listened and recognised these feelings.
Key findings
01Parents described constant vigilance and disrupted sleep, staying awake at night even when their children did not need immediate care.
02They valued healthcare professionals who listened, treated their child with dignity and involved them in care decisions.
03Home could be both a sanctuary and a restrictive space when medical equipment and homecare providers reduced privacy.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study included 16 parents, so the themes cannot be assumed to apply to all families with complex care needs. The sample was recruited through referrals and may overrepresent some types of families. Most participants were mothers and native Norwegians, and only two fathers were included. The study describes experiences from interviews and did not test whether any nurse response improves outcomes. The authors were nurses and may have professional preconceptions, though they tried to reflect on this.
Declared interests
The authors declared no conflicts of interest.
The easy way to misread this
Do not read these themes as evidence that nurse communication improves family wellbeing. The study asked parents to describe their experiences and did not test an intervention.