End-of-life care for infants, children and young people with life-limiting conditions Other
Conditions
Interventions
A mixed-methods study focused on three exemplar clinical settings: cancer services, paediatric intensive care units (PICUs), and neonatal units (NNUs). The study consists of three workstreams, with th
Sponsors
University of York
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Current exclusion criteria as of 04/03/2024: WS1: The researchers intend to recruit all clinical leads of children’s cancer services, NNUs and PICUs, and all Chairs of paediatric palliative care networks. WS2: 1. Parents whose child has died at least 3 months prior to contact and no more than 3 years prior to contact 2. Healthcare professionals working in a children's cancer service, PICU or NNU WS3 Part 1: All children and TYAs with cancer in England who died between 2012-2020. WS3 Part 2: Parents of Infants and children who received treatment in either a NICU or PICU and who have died in the last 5 years. _____ Previous inclusion criteria: WS1: The researchers intend to recruit all clinical leads of children’s cancer services, NNUs and PICUs, and all Chairs of paediatric palliative care networks. WS2: 1. Parents whose child has died at least 3 months prior to contact and no more than 3 years prior to contact 2. Healthcare professionals working in a children's cancer service, PICU or NNU WS3 Part 1: All children and TYAs with cancer in England who died between 2012-2020. WS3 Part 2: Infants and children being treated in NNUs and PICUs and identified by staff as being at high risk of death
Exclusion criteria
Exclusion criteria: Current exclusion criteria as of 04/03/2024: WS2: Parents whose child died less than 3 months ago or more than 3 years ago (at the time of recruitment) WS3 Part 1: The researchers intend to use data of all children and TYAs who died in NHS cancer treatment centres 2012-2018 WS3 Part 2: Parents not able to give informed consent or under the age of 16. Parents in cases where there are safeguarding issues. _____ Previous exclusion criteria: WS2: Parents whose child died less than 3 months ago or more than 3 years ago (at the time of recruitment) WS3 Part 1: The researchers intend to use data of all children and TYAs who died in NHS cancer treatment centres 2012-2018 WS3 Part 2: Children not identified as being at high risk of death
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| WS3 Part 1: The presence (or not) of the following three high-intensity treatments in the final days of each child's life, measured using retrospective secondary analysis: intravenous chemotherapy <14 days from death; more than one emergency department visit; and more than one hospitalization or intensive care unit admission <30 days from death WS3 Part 2: The children's quality of death, measured using an appropriate scale to be determined through consultation with the study's Parent Advisory Group | — |
Secondary
| Measure | Time frame |
|---|---|
| WS3: 1. Presence of mechanical ventilation (yes/no) <14 days from death 2. Place of death (hospital, home, hospice) measured using patient records | — |
Countries
England, United Kingdom
Contacts
Public ContactAndrew Haynes
Outcome results
None listed