The role of 'familiarity' and 'normality' in supporting transition to end of life care in paediatric oncology: A qualitative study.
Daniel Kelly, Mia Closs, Rachel McAndrew and 1 others
PMID 39001668WHAT IT FOUND
Bereaved parents and staff described familiarity and normality as important during transition to end-of-life care: staying with known staff, home-like routines, and charity accommodation were valued.
No treatment effect was tested.
Key findings
01Parents said becoming familiar with hospital routines, treatments and terminology gave them a sense of control and confidence, while the shift to end-of-life care brought new fear and uncertainty.
02Parents valued the normality provided by a charity family accommodation facility, and said hospital staff and other families became their main support rather than friends or relatives.
03Many parents preferred staying in familiar hospital surroundings with known staff, and moving to unfamiliar settings was described as making the transition harder.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study was carried out in one specialist paediatric oncology setting in Scotland, so it does not show how other units or home-based services would behave. Only seven bereaved families and 10 professionals took part, and 72% of 31 invited parents did not respond, so the themes may reflect those willing to talk about their loss. Fathers were few and several withdrew from the second interview, so fathers' views may be underrepresented. The professional sample was mostly women, which the authors note could introduce gendered bias. The study reports experiences and themes, not measured outcomes or a tested intervention.
Declared interests
The research was supported by The Edinburgh and Lothians' Health Foundation Fund and additional financial assistance from the Children's Cancer and Leukaemia Endowment Fund. The authors declared no conflicts of interest.
The easy way to misread this
Do not read these themes as evidence that staying in hospital or using family accommodation improves end-of-life outcomes. The study reports what parents and staff described, not a tested intervention or measured effect.