Header

UZH-Logo

Maintenance Infos

Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups


Inglin, S; Hornung, R; Bergstraesser, E (2011). Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups. European Journal of Pediatrics, 170(8):1031-1038.

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.

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.

Statistics

Citations

14 citations in Web of Science®
17 citations in Scopus®
Google Scholar™

Altmetrics

Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Children's Hospital Zurich > Medical Clinic
06 Faculty of Arts > Institute of Psychology
Dewey Decimal Classification:150 Psychology
610 Medicine & health
Language:English
Date:2011
Deposited On:21 Oct 2011 14:34
Last Modified:07 Dec 2017 09:16
Publisher:Springer
ISSN:0340-6199
Publisher DOI:https://doi.org/10.1007/s00431-011-1398-5
PubMed ID:21274564

Download

Full text not available from this repository.
View at publisher