Specialized pediatric palliative home care: a prospective evaluation.

Details

Serval ID
serval:BIB_2684BFD9FDE8
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
Specialized pediatric palliative home care: a prospective evaluation.
Journal
Journal of Palliative Medicine
Author(s)
Groh G., Borasio G.D., Nickolay C., Bender H.U., von Lüttichau I., Führer M.
ISSN
1557-7740 (Electronic)
ISSN-L
1557-7740
Publication state
Published
Issued date
2013
Volume
16
Number
12
Pages
1588-1594
Language
english
Notes
Publication types: Journal ArticlePublication Status: ppublish
Abstract
Abstract Objectives: In Germany since 2007 children with advanced life-limiting diseases are eligible for Pediatric Palliative Home Care (PPHC), which is provided by newly established specialized PPHC teams. The objective of this study was to evaluate the acceptance and effectiveness of PPHC as perceived by the parents. Methods: Parents of children treated by the PPHC team based at the Munich University Hospital were eligible for this prospective nonrandomized study. The main topics of the two surveys (before and after involvement of the PPHC team) were the assessment of symptom control and quality of life (QoL) in children; and the parents' satisfaction with care, burden of patient care (Häusliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and QoL (Quality of Life in Life-Threatening Illness-Family Carer Version, QOLLTI-F). Results: Of 43 families newly admitted to PPHC between April 2011 and June 2012, 40 were included in the study. The median interval between the first and second interview was 8.0 weeks. The involvement of the PPHC team led to a significant improvement of children's symptoms and QoL (P<0.001) as perceived by the parents; and the parents' own QoL and burden relief significantly increased (QOLLTI-F, P<0.001; 7-point change on a 10-point scale), while their psychological distress and burden significantly decreased (HADS, P<0.001; HPS, P<0.001). Conclusions: The involvement of specialized PPHC appears to lead to a substantial improvement in QoL of children and their parents, as experienced by the parents, and to lower the burden of home care for the parents of severely ill children.
Pubmed
Web of science
Create date
08/01/2014 10:50
Last modification date
20/08/2019 13:05
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