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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

This study is gathering evidence the NHS and children's hospices can use to guide how they meet the pastoral, spiritual and religious needs of children and young people living with a life-threatening or life-shortening condition, and their families.

Background and study aims

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, and to feel valued and supported, are core elements of what is known as pastoral and spiritual care.  Anyone, religious or not, may have pastoral and spiritual needs.  For some, support to practice religious beliefs is also important. Not meeting these needs causes additional suffering. Yet we know that needs may not be not recognised or attended to.

At the moment, we know very little about how to meet the pastoral, spiritual and religious needs of children and young people diagnosed with a life-threatening or life-shortening condition, and their parents.

The aim of this study is to gather evidence the NHS and children's hospices can use to guide how they meet these needs, including the role of chaplaincy services (sometimes called pastoral and spiritual care services).  It will also explore how chaplaincy services can support clinical and care teams involved in the care of these children and young people.

How we will do the research

The study is made up of four work packages (WP):-

WP1: A survey of NHS and children’s hospice chaplaincy services in England will describe their characteristics, ways of working, and compare provision for adult patients, parents and children.

WP2: Focus groups with chaplaincy staff will explore their views on the differences between caring for children, parents and adult patients, the unique needs of children and parents, and barriers to meeting their pastoral, spiritual and religious needs.

WP3. Interviews with children, young people and parents will explore their pastoral, spiritual and religious 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 children’s and parents’ pastoral, spiritual and religious needs, how they respond to them, and their views about how chaplaincy services can support families and the team.

Sharing the study findings

Some of the project’s outputs will be designed specifically to help the NHS and children’s hospices consider what the study’s findings mean for their chaplaincy services and how they currently identify and respond to pastoral, spiritual and religious support needs. We will also create an audio-visual information resources for families. Finally, we will publish the findings in high-impact, peer reviewed journals and present findings at national and international conferences.

Getting involved

The project has Parent and Young Adult advisory groups.  Please contact Bryony [hyperlinked] if you’d like to find out more about these groups.

Project number: 128468

https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/NIHR128468/#/