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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Acknowledgements
This study was funded by the Swiss foundation Pro Pallium (Schweizer Palliativstiftung für Kinder und junge Erwachsene). The first author had full access to all data in the study and takes responsibility for the integrity of the data and accuracy of data analysis.
We thank the families interviewed in this study for sharing their views and experiences with us. We also want to thank the attending physicians and health care professionals at the four children’s hospitals (Aarau, Lucerne, St. Gallen and Zurich) who helped recruiting the participants.
The authors declare that they have no conflict of interest.
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Inglin, S., Hornung, R. & Bergstraesser, E. Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups. Eur J Pediatr 170, 1031–1038 (2011). https://doi.org/10.1007/s00431-011-1398-5
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DOI: https://doi.org/10.1007/s00431-011-1398-5