Seen and Be Heard: Ensuring Fair Cancer Care for All Children
Launched by GREAT ORMOND STREET HOSPITAL FOR CHILDREN NHS FOUNDATION TRUST · Jun 25, 2024
Trial Information
Current as of August 20, 2025
Not yet recruiting
Keywords
ClinConnect Summary
The "Seen and Be Heard" clinical trial is studying how children and young people with cancer, especially those with learning disabilities or autism, experience their care. Researchers want to understand if there are any differences in the care these children receive compared to those without such conditions. They will gather information through surveys, interviews, and observations in hospitals to find out what challenges these children and their families face during treatment.
To participate, children aged 5-15 who are receiving cancer care, whether or not they have learning disabilities or are autistic, may be eligible. Their parents can also take part in interviews. The study will take place from September 2024 to January 2026, and it aims to ensure that all children get fair and quality cancer care. This trial is important because it seeks to give a voice to families who may feel unheard in the healthcare system and improve the overall experience of cancer care for these young patients.
Gender
ALL
Eligibility criteria
- • Work package 1
- • A) National staff survey
- Inclusion criteria:
- • Healthcare professionals involved in cancer care delivery
- • UK based
- Exclusion criteria:
- • Outside stated of location
- • B) Organisational survey
- Inclusion criteria:
- • - Clinical service leads
- • C) Anonymised retrospective electronic case note review
- Inclusion criteria:
- • Children and Young aged 0-16 with Cancer diagnosis between April 2017 - present, within one large children's hospital site.
- • Work Package 2 - Ethnography study (including interviews)
- • Inclusion criteria
- • Children and Young people receiving cancer care, with/without learning disability and or who are autistic at hospital research site
- • Ages 5-15
- • Exclusion criteria
- • Within palliative care at the time of recruitment
- • Subject to child safeguarding proceedings
- • Outside of stated age range
- • Children who have not been disclosed their cancer diagnosis and where their family would prefer to maintain a complete non-disclosure approach
- Parents:
- • Inclusion
- • Of children receiving cancer care in hospital research site
- • If included for interview only, child's age may be aged 0-16
- • Conversational English
- • Exclusion - Has mental health difficulties that would impair ability to participate effectively or create an unmanageable risk e.g. psychosis
- Healthcare professionals:
- • Inclusion
- • - Service providers of cancer care at hospital research site
About Great Ormond Street Hospital For Children Nhs Foundation Trust
Great Ormond Street Hospital for Children NHS Foundation Trust is a leading pediatric healthcare institution in the UK, renowned for its commitment to advancing child health through innovative research and clinical trials. As a prominent sponsor of clinical studies, the Trust focuses on developing and evaluating new treatments and therapies for a wide range of pediatric conditions, leveraging its extensive expertise and state-of-the-art facilities. With a multidisciplinary team of specialists and a patient-centered approach, Great Ormond Street Hospital aims to improve outcomes for children and contribute to the global body of medical knowledge.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Patients applied
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported