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Parental experiences with a paediatric palliative care team: A qualitative study
Lisa M Verberne1, Antoinette Yn Schouten-van Meeteren2, Diederik K Bosman3
11 Department of Medical Humanities, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands.
Parents found paediatric palliative care teams valuable for continuity, practical help, and sensitive support. Initial expectations were low, but the team
Area of Science:
- Pediatric Palliative Care
- Family Support Services
- Qualitative Research Methods
Background:
- Limited home support for children with life-limiting illnesses.
- Paediatric palliative care teams aim to improve care continuity and family support.
- Parental experiences with these multidisciplinary teams are under-researched.
Purpose of the Study:
- To explore parental perspectives on the support provided by a new paediatric palliative care team.
- To understand how multidisciplinary teams impact families caring for children with life-limiting conditions.
Main Methods:
- Interpretative qualitative interview study.
- Thematic analysis of data from 47 interviews with 42 parents.
- Study involved parents of 24 children with malignant or non-malignant diseases.
Main Results:
- Parents initially had low expectations but grew to value the team's involvement.
- Key valued elements included continuity of care, a single point of contact, practical support, and a sensitive team attitude.
- Parents suggested clearer upfront communication about the team's support services.
Conclusions:
- Parents reported feeling supported by the paediatric palliative care team.
- Continuity, practical support, and team attitude are crucial for quality paediatric palliative care.
- New teams should prioritize these three elements to effectively support families.
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