Pastoral, spiritual and religious care of children facing end of life
Research type
Research Study
Full title
Supporting the complete care of children and young people with life-threatening or life-shortening conditions, and their families: a mixed-method study of pastoral, spiritual and religious needs and support, and the role of chaplaincy services
IRAS ID
288298
Contact name
Bryony Beresford
Contact email
Sponsor organisation
University of York
Clinicaltrials.gov Identifier
41288313, ISRCTN
Duration of Study in the UK
2 years, 1 months, 30 days
Research summary
Having a life-threatening or life-shortening condition is an extremely challenging experience and raises troubling questions in people's minds. Having the chance to explore these thoughts and feelings, to feel valued and supported are core elements of what is known as pastoral and spiritual care. For some, support to practice religious beliefs are important to coping. Not meeting these needs causes additional suffering. In the NHS, chaplaincy is defined as the main provider of pastoral, spiritual and religious (PSR) care. Anyone, religious or not, may have spiritual and pastoral needs. We know very little about how to best meet the PSR needs of children diagnosed with a life-threatening or life-shortening condition, and their parents.
This study will generate evidence the NHS and children's hospices can use to guide how they meet the PSR needs of children and their families, including how chaplaincy/spiritual care services can support them.
The study, lasting 26 months, is made up of four work packages (WP):
WP1: A survey of heads of chaplaincy/spiritual care in NHS acute trusts and children’s hospices will describe their characteristics, ways of working, and – within NHS settings - compare provision for adult patients, parents and children.
WP2: Focus groups with chaplaincy/spiritual care staff will explore differences between caring for children, parents and adult patients, the unique needs of families, and barriers to meeting their PSR needs.
WP3: Interviews with children and parents will explore their PSR needs, sources of support, understanding of chaplaincy services and experiences of using them.
WP4: Focus groups with clinical/care teams will investigate their views on the PSR needs of families, how they respond to them, and their views about how chaplaincy services can support families and the team.
The study is funded by National Institute for Health Research’s Health Services and Delivery Research Programme.REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
21/YH/0072
Date of REC Opinion
15 Apr 2021
REC opinion
Further Information Favourable Opinion