Plain English Summary
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
Trial website
Contact information
Type
Scientific
Primary contact
Prof Bryony Beresford
ORCID ID
http://orcid.org/0000-0003-0716-2902
Contact details
Social Policy Research Unit
University of York
York
YO10 5DD
United Kingdom
+44 1904-321950
bryony.beresford@york.ac.uk
Additional identifiers
EudraCT number
Nil known
ClinicalTrials.gov number
Nil known
Protocol/serial number
IRAS 288298
Study information
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
Acronym
Study hypothesis
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
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
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
Trial setting
Other
Trial type
Quality of life
Patient information sheet
No participant information sheet available
Condition
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
Phase
Drug names
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 trial start date
01/08/2020
Overall trial end date
30/09/2022
Reason abandoned (if study stopped)
Eligibility
Participant 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.
Participant type
Mixed
Age group
Mixed
Gender
Both
Target number of participants
WP1: 250 respondents; WP2: 75-120; WP3: 45 children & young people, 45 parents; WP4: 80.
Participant exclusion criteria
Does not meet inclusion criteria
Recruitment start date
01/10/2020
Recruitment end date
28/02/2022
Locations
Countries of recruitment
United Kingdom
Trial participating centre
University of York, Social Policy Research Unit
Alcuin B Block
York
YO10 5DD
United Kingdom
Sponsor information
Organisation
University of York
Sponsor details
Research & Enterprise Directorate
RCH/135
Ron Cooke Hub
Heslington
York
YO10 5GE
United Kingdom
+44 (0)1904 328693
michael.barber@york.ac.uk
Sponsor type
University/education
Website
Funders
Funder type
Government
Funder name
National Institute for Health Research
Alternative name(s)
NIHR
Funding Body Type
government organisation
Funding Body Subtype
National government
Location
United Kingdom
Results and Publications
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 statement:
The data sharing plans for the current study are unknown and will be made available at a later date
Intention to publish date
30/06/2023
Participant level data
To be made available at a later date
Basic results (scientific)
Publication list