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Paediatric end-of-life care in the home care setting (PELICAN HOME) - a mixed methods study protocol


Eskola, Katri; Bergstraesser, Eva; Zimmermann, Karin; Cignacco, Eva (2015). Paediatric end-of-life care in the home care setting (PELICAN HOME) - a mixed methods study protocol. Journal of Advanced Nursing, 71(1):204-213.

Abstract

AIMS: (a) To explore parental experiences and needs during their child's end-of-life care at home; (b) to explore patient's characteristics and current provision of paediatric end-of-life care in the home care setting in Switzerland; and (c) to determine influencing system factors impacting end-of-life care at home.
BACKGROUND: Parental experiences/needs and paediatric end-of-life care services in the home care setting are influenced by national healthcare policy, determinants of the family and the individual patient. In Switzerland, there is a lack of information about the provision of paediatric end-of-life care at home and related parent's experiences/needs.
DESIGN: Sub-study of the nationwide multicenter study 'Paediatric End-of-Life CAre Needs in Switzerland' using a concurrent qualitative embedded mixed methods design.
METHODS: Data will be collected from January-May 2014 through community care organizations and children's hospitals. The study includes approximately 40-50 families whose child (0-18 years) died in the years 2011-2012 due to a cardiological, neurological or oncological condition and spent at least 21 days at home during the last 4 weeks of life. Qualitative data will be collected through semi-structured interviews with parents and analysed by 'thematic analysis'. Quantitative data about patient's characteristics will be obtained from patient's medical charts and parental experiences/needs through the parental questionnaire. Appropriate descriptive and inference statistical methods will be used for data analysis.
DISCUSSION: This study will provide comprehensive basic information about parental needs and patient characteristics for the provision of paediatric end-of-life care and may promote the development of family-centred paediatric end-of-life care services at home.
STUDY REGISTRATION: The PELICAN-study is registered in the database of Clinical Trial gov. Study ID-number: NCT 01983852.

Abstract

AIMS: (a) To explore parental experiences and needs during their child's end-of-life care at home; (b) to explore patient's characteristics and current provision of paediatric end-of-life care in the home care setting in Switzerland; and (c) to determine influencing system factors impacting end-of-life care at home.
BACKGROUND: Parental experiences/needs and paediatric end-of-life care services in the home care setting are influenced by national healthcare policy, determinants of the family and the individual patient. In Switzerland, there is a lack of information about the provision of paediatric end-of-life care at home and related parent's experiences/needs.
DESIGN: Sub-study of the nationwide multicenter study 'Paediatric End-of-Life CAre Needs in Switzerland' using a concurrent qualitative embedded mixed methods design.
METHODS: Data will be collected from January-May 2014 through community care organizations and children's hospitals. The study includes approximately 40-50 families whose child (0-18 years) died in the years 2011-2012 due to a cardiological, neurological or oncological condition and spent at least 21 days at home during the last 4 weeks of life. Qualitative data will be collected through semi-structured interviews with parents and analysed by 'thematic analysis'. Quantitative data about patient's characteristics will be obtained from patient's medical charts and parental experiences/needs through the parental questionnaire. Appropriate descriptive and inference statistical methods will be used for data analysis.
DISCUSSION: This study will provide comprehensive basic information about parental needs and patient characteristics for the provision of paediatric end-of-life care and may promote the development of family-centred paediatric end-of-life care services at home.
STUDY REGISTRATION: The PELICAN-study is registered in the database of Clinical Trial gov. Study ID-number: NCT 01983852.

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Children's Hospital Zurich > Medical Clinic
Dewey Decimal Classification:610 Medicine & health
Language:English
Date:January 2015
Deposited On:14 Dec 2015 13:04
Last Modified:08 Dec 2017 15:31
Publisher:Wiley-Blackwell Publishing, Inc.
ISSN:0309-2402
Publisher DOI:https://doi.org/10.1111/jan.12463
PubMed ID:24909918

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