Ignite Creation Date:
2024-07-17 @ 11:07 AM
Last Modification Date:
2024-10-26 @ 3:33 PM
Study NCT ID:
NCT06481527
Status:
NOT_YET_RECRUITING
Last Update Posted:
2024-07-01
First Post:
2024-06-25
Brief Title:
Seen and Be Heard Ensuring Fair Cancer Care for All Children
Sponsor:
Great Ormond Street Hospital for Children NHS Foundation Trust
Organization:
Great Ormond Street Hospital for Children NHS Foundation Trust
Study Overview
Official Title:
The Seen and Be Heard Study Identifying the Barriers and Facilitators to Ensuring Equitable Cancer Care for Children With and Without a Learning Disability andor Autism Spectrum Condition
Status:
NOT_YET_RECRUITING
Status Verified Date:
2024-06
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief Summary:
Introduction
Research has routinely been conducted into the experiences and well-being of children and young people with cancer and their families However there is little research that directly involves those with learning disabilities LD and or who are autistic This is despite some cancers being more far more prevalent in some syndromes associated with learning disabilities for example Downs Syndrome More generally paediatric hospital care recent research has highlighted inequity for children with LD compared with children and young people without LD Staff often feel less capable and confident to deliver care to those with learning disabilities as well as having less capacity Still less is known about cancer care for autistic children and young people for example relating to symptom management We aim to explore how inequity might present in cancer care for children and young people aged 5-15 years with and without LD and or who are autistic to see what inequities exist for whom why and in what circumstances
Methods and analysis
A transformative mixed methods design will be used comprising an individual staff and organisational level survey retrospective case note review ethnographic observations of clinical care family and staff interviews and participatory workshops The ethnographer will follow and observe individual children and their families A toolbox of creative participatory methods will be employed including providing a co-designed research data collection journal to support elicitation of the childs perspective
Ethics and Dissemination The study will run from September 2024 to January 2026 Health Research Authority approval is granted REC Reference no 24LO0410 IRAS Project ID 335623 for work package 2 and 3 involving the ethnography with interviews and workshops
Research has routinely been conducted into the experiences and well-being of children and young people with cancer and their families However there is little research that directly involves those with learning disabilities LD and or who are autistic This is despite some cancers being more far more prevalent in some syndromes associated with learning disabilities for example Downs Syndrome More generally paediatric hospital care recent research has highlighted inequity for children with LD compared with children and young people without LD Staff often feel less capable and confident to deliver care to those with learning disabilities as well as having less capacity Still less is known about cancer care for autistic children and young people for example relating to symptom management We aim to explore how inequity might present in cancer care for children and young people aged 5-15 years with and without LD and or who are autistic to see what inequities exist for whom why and in what circumstances
Methods and analysis
A transformative mixed methods design will be used comprising an individual staff and organisational level survey retrospective case note review ethnographic observations of clinical care family and staff interviews and participatory workshops The ethnographer will follow and observe individual children and their families A toolbox of creative participatory methods will be employed including providing a co-designed research data collection journal to support elicitation of the childs perspective
Ethics and Dissemination The study will run from September 2024 to January 2026 Health Research Authority approval is granted REC Reference no 24LO0410 IRAS Project ID 335623 for work package 2 and 3 involving the ethnography with interviews and workshops
Detailed Description:
None
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None