title: Paediatric end-of-life care in the home care setting (PELICAN HOME)--a mixed methods study protocol.
abstract: OBJECTIVE
  (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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
  
  
  BACKGROUND
  The PELICAN-study is registered in the database of Clinical Trial gov. Study ID-number: NCT 01983852.
authors.affiliation: Institute of Nursing Science, University of Basel, Switzerland.
authors.forename: Katri
authors.initials: K
authors.lastname: Eskola
authors.forename: Eva
authors.initials: E
authors.lastname: Bergstraesser
authors.forename: Karin
authors.initials: K
authors.lastname: Zimmermann
authors.forename: Eva
authors.initials: E
authors.lastname: Cignacco
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D006699:Home Care Services / Q000458:organization & administration*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D010290:Parents / Q000523:psychology; D013557:Switzerland; D013727:Terminal Care
keywords: home care; midwives; mixed methods; nurses; nursing; paediatric end-of-life care; parental experiences; parental needs