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Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups
Susanne Inglin1, Rainer Hornung, Eva Bergstraesser
1Department of Psychology, Social and Health Psychology, University of Zurich, Binzmühlestr, 14/Box 14, 8050, Zurich, Switzerland.
Insights
Families caring for children with life-limiting illnesses need better pediatric palliative care. Study highlights gaps in practical, psychosocial, and bereavement support, especially for non-cancer diagnoses.
Area of Science:
- Pediatric Palliative Care
- Qualitative Research
- Family Support
Background:
- Children with life-limiting diseases require comprehensive palliative care.
- Existing pediatric palliative care services may not meet diverse family needs.
- Care coordination and psychosocial support are critical for these families.
Purpose of the Study:
- To explore the perceptions and needs of families caring for children with life-limiting diseases.
- To identify specific support requirements across different diagnostic groups (cancer, neurological, other).
- To inform the development of tailored pediatric palliative care in Switzerland.
Main Methods:
- Qualitative study involving interviews with 15 parents.
- Participants' children had life-limiting diseases and received palliative care or had died within two years.
- Interviews focused on communication, care support needs, and bereavement support.
Main Results:
- Parents of children with non-cancer/non-neurological conditions reported significant lack of practical and psychosocial support.
- Parents of children with cancer faced challenges in care coordination, particularly at home.
- Bereaved parents expressed a strong desire for bereavement support services.
Conclusions:
- Pediatric palliative care in Switzerland has shortcomings in meeting family needs.
- Essential needs include enhanced psychosocial support, improved care coordination, and accessible bereavement services.
- Recommendations are provided for efficient and family-centered pediatric palliative care implementation.
Abstract:
The objective of this qualitative study was to explore the perceptions and needs of families who care for a child with a life-limiting disease. Considering the heterogeneity of life-limiting diseases in childhood, three diagnostic groups were defined: (a) cancer, (b) neurological disorders, and (c) non-cancer/non-neurological conditions. Fifteen parents whose child had been treated in one of four children's hospitals and received palliative care or had died within the previous 2 years were interviewed. The main interview topics were: communication with professionals, need for support in care (at home or hospital), and bereavement support. Irrespective of the center of care, parents of children with diagnoses other than cancer reported a lack of support concerning practical issues of care and psychosocial aspects. Parents of children with cancer expressed difficulties related to coordination of care especially when care was provided at home. Bereaved parents emphasized their wish for bereavement support. Our findings demonstrate shortcomings in pediatric palliative care in Switzerland and outline basic needs of affected families including psychosocial support, coordination of care and bereavement support. Based on these findings we formulate some suggestions on how to initiate pediatric palliative care in a most efficient way and tailored to the needs of families in Switzerland.
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