Parents' Experiences of Family-Centred Care in Home-Based Paediatric Care of Their Child With Life-Limiting Illness: A Qualitative Descriptive Study.
Karjula Sari, Pölkki Tarja, Hökkä Minna and 1 others
PMID 40129088WHAT IT FOUND
Parents valued home-based care for children with life-limiting illness but found it burdensome when services were not tailored.
They wanted privacy, sibling support, inclusion in decisions and competent home care teams.
Key findings
01Parents recommended home-based care even though it was burdensome and asked for services tailored to the family's needs.
02Parents said the constant presence of home care staff and medical sounds in the home disturbed sleep and limited family life, and that siblings often felt left out.
03Parents felt safer when ward staff were directly reachable and preferred ward nurses for demanding care, but reported home care team competence and substitute systems were sometimes inadequate.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Only 11 parents were interviewed, all linked to one Finnish university hospital system, so the findings may not transfer to other services. Home care models varied widely, including 24-hour care, visiting nurses and parent-delivered treatments, so it is not possible to separate which arrangement produced which experience. The interviewer was a paediatric nurse and a parent of a child with a life-limiting illness, and transcripts were not returned to participants for checking. Parents were recruited through ward managers, so families not known to the departments or who declined were not represented. No field notes were taken, and the analysis was conducted mainly by the first author, although the research team discussed the process.
Declared interests
The authors declare no conflicts of interest.
The easy way to misread this
Do not read the parents' recommendation of home-based care as proof that it improves outcomes or that family-centred care is being delivered effectively. The study reports experiences, not outcomes, and parents also described burdens, privacy loss, sibling neglect, ignored concerns and competence gaps.