[Palliative home care of children: an opinion survey of orphaned parents]

Title

[Palliative home care of children: an opinion survey of orphaned parents]

Creator

Kuhlen M; Schlote A; Borkhardt A; Janßen G

Publisher

Klinische Pädiatrie

Date

2014

Subject

home care services; survey

Description

INTRODUCTION: In Germany, 500 children die of malignancies per year. Many families wish to be cared for in a home setting at the end-of-life. METHODS: Families of children who were cared for by the paediatric palliative care team (PPCT) in a home setting between 01.02.2003 to 30.09.2009 were included in the survey. The questionnaire consisted of 87 items with nominal scaled variables and numeric rating scales (NRS; 1-4, lowest to highest satisfaction) as response options. RESULTS: 84 relatives of 49 children participated (response rate 53.2%). Duration of care varied between 3-246 days. All 49 patients died at home. 98.8% of the respondents were satisfied with their decision for home care. The symptoms pain (86.9%) and fatigue (85.7%) were reported most frequently. Satisfaction with symptom control was high (NRS 3.55±0.49). The respondents were satisfied with communication (NRS 3.73±0.57) and end-of-life care (NRS 3.85±0.90). Satisfaction with psychosocial care (NRS 3.24±0.87) was significantly lower (p<0.05). Parents who stayed in contact with the PPCT by phone and in person were more satisfied with aftercare. DISCUSSION: From parental view satisfying home-care of children with cancer is feasible. Symptom control succeeds in a home setting.
2014-05

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

182-187

Issue

3

Volume

226

Citation

Kuhlen M; Schlote A; Borkhardt A; Janßen G, “[Palliative home care of children: an opinion survey of orphaned parents],” Pediatric Palliative Care Library, accessed September 17, 2021, https://pedpalascnetlibrary.omeka.net/items/show/15012.

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