Paediatric end-of-life care needs in Switzerland: Current practices, and perspectives from parents and professionals. A study protocol
MetadataShow full item record
Aim: To present a protocol for a multi-phase study about the current practice of end-of-life care in paediatric settings in Switzerland. Background: In Switzerland, paediatric palliative care is usually provided by teams, who may not necessarily have specific training. There is a lack of systematic data about specific aspects of care at the end of a child's life, such as symptom management, involvement of parents in decision-making and family-centred care and experiences and needs of parents, and perspectives of healthcare professionals. Design: This retrospective nationwide multicentre study, Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN), combines quantitative and qualitative methods of enquiry. Methods: The PELICAN study consists of three observational parts, PELICAN I describes practices of end-of-life care (defined as the last 4 weeks of life) in the hospital and home care setting of children (0-18 years) who died in the years 2011-2012 due to a cardiac, neurological or oncological disease, or who died in the neonatal period. PELICAN II assesses the experiences and needs of parents during the end-of-life phase of their child. PELICAN III focuses on healthcare professionals and explores their perspectives concerning the provision of end-of-life care. Conclusion: This first study across Switzerland will provide comprehensive insight into the current end-of-life care in children with distinct diagnoses and the perspectives of affected parents and health professionals. The results may facilitate the development and implementation of programmes for end-of-life care in children across Switzerland, building on real experiences and needs.
Showing items related by title, author, creator and subject.
Supportive and palliative care needs of families of children who die from cancer: an Australian studyMonterosso, Leanne; Kristjanson, Linda (2008)Objective: To obtain feedback from parents of children who died from cancer about their understanding of palliative care, their experiences of palliative and supportive care received during their child's illness, and their ...
Wielenga, J.; Tume, L.; Latour, Jos; van den Hoogen, A. (2015)Objective: This study aimed to identify and prioritise neonatal intensive care nursing research topics across Europe using an e-Delphi technique. Design: An e-Delphi technique with three questionnaire rounds was performed. ...
The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groupsAoun, Samar ; Gill, Fenella ; Phillips, M.B.; Momber, S.; Cuddeford, L.; Deleuil, R.; Stegmann, R.; Howting, D.; Lyon, M.E. (2020)Background: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. Objectives: Evaluate the use and feasibility of the Paediatric ...