Children and young people, and their parents, diagnosed with a life-shortening or life-threatening condition Other Pediatric palliative care
Conditions
Interventions
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 describ
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
Sponsors
University of York
Eligibility
Sex/Gender
All
Inclusion criteria
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.
Exclusion criteria
Exclusion criteria: Does not meet inclusion criteria
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 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
| Measure | Time frame |
|---|---|
| 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 | — |
Countries
England, United Kingdom
Outcome results
None listed