'A team around the child' professionals' experiences of unmet needs, access and expectations in children's palliative care services, a phenomenological study in the UK.
Georgina Constantinou, Erica J Cook, Elaine Tolliday and 1 others
PMID 36946427WHAT IT FOUND
Professionals reported that families often had to 'fight' to access basic equipment and respite care.
Staff felt blocked by other services or overwhelmed by staffing shortages, while families who did not shout were perceived to suffer in silence.
Key findings
01Professionals described families having to fight for essential items like mobility equipment, beds, and wet rooms to live at home.
02Staff reported being unable to provide care due to insufficient numbers, sometimes having to refuse family requests for palliative support.
03Professionals distinguished between parents who 'shout' to get services and those who 'suffer in silence' without asking for help.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPsWhat it means for RNs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
The study was conducted in a specific geographic area in the UK, so findings may not be transferable to other regions or countries. Recruitment was difficult for some professional groups, including speech and language therapists and psychological services, so their perspectives are underrepresented. The sample size was relatively small (29 participants).
Declared interests
The research was supported by a jointly funded PhD studentship from the Institute for Health Research, University of Bedfordshire and Keech Hospice Care. The authors declared no other potential conflicts of interest.
The easy way to misread this
Do not interpret these findings as evidence that current service models are effective. The paper reports professional perceptions of barriers and unmet needs, not patient outcomes or the success of interventions.