Experiences of Family Caregivers of Children Aged 1-23 Months Who Have Received Pediatric Palliative Care: A Systematic Review With Qualitative Metasynthesis.
Juan Manuel Vázquez Sánchez, Manuela Rodríguez Sánchez, Emilio Mota Romero and 4 others
PMID 40169364WHAT IT FOUND
Parents of infants in pediatric palliative care valued control, home care, and family routines.
They reported gaps in staff training, communication, and discharge instructions, while appreciating supportive nurses.
Key findings
01The synthesis produced four main themes: individual ability to cope, relationship with the child, other family members, and the health system.
02Caregivers valued control over decisions and often preferred the home as the place for care.
03Caregivers reported unsatisfactory healthcare, while also valuing supportive nursing staff.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The included studies covered children from 0 to 17 years, and none focused only on ages 1 to 23 months. Mothers were predominant, and grandparents, siblings, and other caregivers were less represented. Only two studies met the CASPe item about the relationship between researcher and research objective. The review searched only English, Spanish, and Portuguese studies from 2013 to 2023. Oncological conditions were overrepresented relative to global pediatric palliative care needs. The findings describe caregiver experiences, not measured outcomes of care.
Declared interests
The authors declare no conflicts of interest and report nothing to declare in the ethics statement.
The easy way to misread this
Do not read these themes as evidence that nurse training, home care, or palliative care teams improve caregiver outcomes. This is a qualitative synthesis, and the included studies were not limited to children aged 1 to 23 months.