Supporting the complete care of children and young people with life-threatening or life-shortening conditions
The aim of this study is to gather 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.
- Professor Bryony Beresford (SPRU/Martin House Research Centre (MHRC))
- Dr Julia Hackett (SPRU/MHRC)
- Lucy Stuttard (SPRU)
- Dr Jan Aldridge (Consultant Clinical Psychologist)
- Mohammed Arshad, Head of Chaplaincy, Bradford Teaching Hospitals NHS Foundation Trust
- Professor Karl Atkin (Department of Health Sciences)
- Lizzie Chambers (Director of Research and Programmes, Together for Short Lives)
- Mark Clayton (Chaplain, Martin House Children's Hospice)
- Professor Faith Gibson (School of Health Sciences, University of Surrey; Centre of Outcomes and Experience Research in Children's Health, Illness and Disability, Great Ormond Street Hospital, London)
- Jessica Grace (Head of Humanist Care, Humanists UK)
- Dr Richard Hain (Consultant and Lead Clinician, Paediatric Palliative Medicine (Wales); University of South Wales
- Reverend Paul Nash (Birmingham Women's and Children's NHS Foundation Trust)
- Dr Rebecca Nye (Developmental Psychology)
- Dr Bob Phillips (Centre for Reviews and Dissemination)
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 will we 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.
The project has Parent and Young Adult advisory groups. Please contact Bryony if you’d like to find out more about these groups.
August 2020 to September 2022