Understanding the pastoral, spiritual and religious care and support needs of children and young people with life-threatening or life-shortening conditions, and their families
| ISRCTN | ISRCTN41288313 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN41288313 |
| IRAS number | 288298 |
| Secondary identifying numbers | IRAS 288298 |
- Submission date
- 19/08/2020
- Registration date
- 10/09/2020
- Last edited
- 05/06/2025
- Recruitment status
- No longer recruiting
- Overall study status
- Completed
- Condition category
- Other
Plain English summary of protocol
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. For some, support to practice religious beliefs is 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.
The aim of this study is to gather evidence that the NHS and children's hospices can use to guide how they meet the PSR needs of children and their families, including how chaplaincy services can best care for and support them.
The study is made up of four work packages (WP):
1. Work package 1: 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.
2. Work package 2: Focus groups with chaplaincy staff will explore their views on the differences between caring for children, parents, and adult patients, the unique needs of families, and barriers to meeting the PSR needs of families
3. Work package 3: Interviews with children and parents will explore their PSR needs, sources of support, understanding of chaplaincy services, and experiences of using them
4. Work package 4: 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
Who can participate?
1. Work package 1: Chaplaincy service leads at acute NHS Trusts or chaplains/heads of care at children's hospices in England
2. Work package 2: Salaried chaplains and chaplaincy volunteers based in acute NHS Trusts in England, and chaplains based in children's hospices across England
3. Work package 3: Children and young people with life-threatening or life-shortening conditions, and their parents. Clinical or hospice care teams will identify children and young people on their caseloads suitable for the study, and for whom they have no concerns about passing on information about the study. Around 12 clinical teams and 5 hospices will be supporting the recruitment of children/young people and parents to the study.
4. Work package 4: Staff in clinical or care teams from the clinics and hospices supporting the recruitment of children and young people, and their parents, to work package 3
What does the study involve?
The study will last 26 months, and is made up of four work packages:
1. Work package 1: Chaplaincy service leads will complete an electronic survey which will take about 20 minutes to complete.
2. Work package 2: Chaplaincy staff will attend a single focus group discussion, lasting 60-90 minutes and taking place in their usual place of work or via a virtual conferencing facility.
3. Work package 3: Children, young people and parents will take part in a single interview – conducted face-to-face or via telephone or video call. Interviews with children/young people will around 40-70 minutes; interviews with parents will last around 60-90 minutes.
4. Work package 4: Clinical team members will attend a single focus group discussion, lasting 60-90 minutes and taking place in their usual place of work or via video conference. Focus groups for hospice chaplains will either be via video conference or take place at three children’s hospices, with chaplains working in other hospices travelling to these venues.
What are the possible benefits and risks of participating?
Professionals taking part in this study will be doing so in their professional capacity and the study concerns their professional role. There are no risks to them taking part in the study.
There are no direct benefits to the children, young people, and parents who take part in this study. However, we know from other studies that people typically value the opportunity to ‘tell their story’. There is a risk that children, young people, and parents may find talking about their situation, concerns and experiences cause them to become upset or feel uncomfortable. The study has put in place a number of strategies to minimise that risk and to ensure distress is well-managed, there is access to appropriate support, and there are no longer-term negative impacts.
Where is the study run from?
The University of York (UK)
When is the study starting and how long is it expected to run for?
From August 2020 to September 2022
Who is funding the study?
The National Institute for Health Research (UK) Health Services and Delivery Research Programme
Who is the main contact?
Prof Bryony Beresford (CI)
bryony.beresford@york.ac.uk
Contact information
Scientific
Social Policy Research Unit
University of York
York
YO10 5DD
United Kingdom
 ORCID ID |
0000-0003-0716-2902 |
|---|---|
| Phone | +44 1904-321950 |
| bryony.beresford@york.ac.uk |
Study information
| Study design | A mixed-method observational study, comprising four work packages: 1. Work package 1, a survey of chaplaincy services in acute NHS trusts and children's hospices 2. Work package 2, focus groups with chaplaincy staff based in acute NHS trusts and children's hospices 3. Work package 3, interviews with children and young people, and parents 4. Work package 4, focus groups with clinical and hospice care teams |
|---|---|
| Primary study design | Observational |
| Secondary study design | Cross sectional survey, qualitative |
| Study setting(s) | Other |
| Study type | Quality of life |
| Participant information sheet | No participant information sheet available |
| Scientific 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 |
| Study objectives | To support evidence-informed change and practice in the provision of pastoral, spiritual and religious care, through chaplaincy services and other health/care professionals, to children and young people facing end of life and their parents |
| Ethics approval(s) | 1. Work package 1, not required 2. Work packages 2, 3, and 4, Pending 01/09/2020, NHS REC via UK Health Research Authority approvals process |
| Health condition(s) or problem(s) studied | Children and young people, and their parents, diagnosed with a life-shortening or life-threatening condition |
| Intervention | The study will last 26 months, and is made up of four work packages: 1. Work package 1: A survey of heads of chaplaincy services in all acute NHS Trusts and children’s hospices in England will describe the organisation and delivery of NHS and hospice chaplaincy services, and identify differences in the nature of provision for children, parents, and adult patients 2. Work package 2: Focus groups with chaplaincy staff and chaplaincy volunteers will explore views and experiences of the pastoral, spiritual and religious (PSR) needs of children and young people facing end of life, their parents and the staff involved in their care, and the ways chaplaincy meets those needs 3. Work package 3: Interviews with children and young people, and parents, will explore pastoral, spiritual, and religious (PSR) needs, sources of support, and experiences of accessing and using PSR care within NHS or children’s hospice settings, including chaplaincy services 4. Work package 4: Focus groups with clinical teams will explore understanding, awareness and use of chaplaincy services, and their perceived impacts; their observations of the pastoral, spiritual and religious needs of patients, and their parents; and their roles (perceived or actual) in identifying and responding to these needs |
| Intervention type | Other |
| Primary outcome measure | 1. Pastoral, spiritual, and religious needs of children and young people facing end of life, and their parents, will be collected between 7 and 19 months: 1.1 Via interviews with children and young people (facing or who have faced end of life), parents of such children, and bereaved parents 1.2. Via focus groups with chaplaincy staff (salaried and volunteer) working in acute hospitals and children's hospices 1.3. Via focus groups with members of clinical and care teams in acute hospitals and children's hospices |
| Secondary outcome measures | 1. Identification and description of the organisation and delivery of pastoral, spiritual and religious care in the NHS and children's hospice by chaplaincy services, and differences in that care for children and young people, parents and adult patients, using the following: 1.1. A cross-sectional survey of NHS chaplaincy services in England and all children's hospices in England between 3 and 6 months 1.2. Via focus groups with chaplaincy staff (salaried and volunteer) working in acute hospitals and children's hospices between 7 and 19 months |
| Overall study start date | 01/08/2020 |
| Completion date | 30/09/2022 |
Eligibility
| Participant type(s) | Mixed |
|---|---|
| Age group | Mixed |
| Sex | Both |
| Target number of participants | WP1: 250 respondents; WP2: 75-120; WP3: 45 children & young people, 45 parents; WP4: 80. |
| Key inclusion criteria | 1. Work package 1: 1.1. Head/service lead of chaplaincy services of an acute NHS Trust or children's hospices in England, or, in case of children's hospice where no in-house chaplaincy service, the head of care 2. Work package 2: 2.1. Salaried chaplains and chaplaincy volunteers based in chaplaincy services participating in the study. Services will be purposefully selected to represent both different organisational settings (such as children’s NHS Trusts, children’s hospitals, general acute services, and hospices) and faiths/religions represented in the local population. 3. Work package 3. Comprises three sub-samples: 3.1. Sub-sample A: 3.1.1. Aged 10 to 18 years 3.1.2. Diagnosed with: relapsed cancer or cancer with ≤75% survival rate; a degenerative neuromuscular condition with evidence of significant deterioration in the past 12 months; or kidney failure 3.1.3. Aware of (potentially) life-limiting nature of condition 3.1.4. Not at end-stage/dying 3.1.5. No significant cognitive impairment 3.1.6. Parents of children aged 0 to 18 years and with the characteristics listed in 3.1.2. to 3.1.4. 3.2. Sub-sample B: 3.2.1. Aged 12 to 24 years 3.2.2. Diagnosed with cancer when aged between 5 and 17 years 3.2.3. Transferred to long-term follow-up within the past 1 year 3.2.4. Within 10 years of the end of treatment 3.2.5. No significant cognitive impairment 3.3. Sub-sample C: 3.3.1. Bereaved parents 3.3.2. Child's cause of death was a life-threatening or life-shortening condition or associated complications 3.3.3. Child died aged 0 to 18 years 3.3.4. Child died ≥3 months ago and ≤2 years ago 4. Work package 4: 4.1. Member of specialist paediatric clinical teams (oncology, renal, neurology, and paediatric and neonatal intensive care) or children's hospice care/bereavement team. Purposive sampling ensures representation of relevant professions (medical, nursing, and allied health), as well as post/role (inpatient, community/outreach, and clinic/outpatient), duration of experience, and faith/beliefs within the recruited sample. |
| Key exclusion criteria | Does not meet inclusion criteria |
| Date of first enrolment | 01/10/2020 |
| Date of final enrolment | 28/02/2022 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centre
York
YO10 5DD
United Kingdom
Sponsor information
University/education
Research & Enterprise Directorate
RCH/135, Ron Cooke Hub
Heslington
York
YO10 5GE
England
United Kingdom
| Phone | +44 (0)1904 328693 |
|---|---|
| michael.barber@york.ac.uk | |
| Website | https://www.york.ac.uk/ |
"ROR" |
https://ror.org/04m01e293 |
Funders
Funder type
Government
Government organisation / National government
- Alternative name(s)
- National Institute for Health Research, NIHR Research, NIHRresearch, NIHR - National Institute for Health Research, NIHR (The National Institute for Health and Care Research), NIHR
- Location
- United Kingdom
Results and Publications
| Intention to publish date | 30/06/2023 |
|---|---|
| Individual participant data (IPD) Intention to share | No |
| IPD sharing plan summary | Data sharing statement to be made available at a later date |
| Publication and dissemination plan | Findings will be published in high-impact, peer reviewed journals. Additional project outputs designed specifically to support consideration of study findings in terms of implications for health care and children's hospice chaplaincy services will be developed. An audio-visual information resources for families will also be created. Once REC approved, the protocol will be available via the funder’s website: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/NIHR128468/#/ |
| IPD sharing plan | The data sharing plans for the current study are unknown and will be made available at a later date |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| Results article | 01/05/2025 | 05/06/2025 | Yes | No |
Editorial Notes
05/06/2025: Publication reference added.
14/09/2020: Internal review.
20/08/2020: Trial’s existence confirmed by the National Institute for Health Research (NIHR).
