Seen and Be Heard: Ensuring Fair Cancer Care for All Children

The Seen and Be Heard Study: Identifying the Barriers and Facilitators to Ensuring Equitable Cancer Care for Children With and Without a Learning Disability and/or Autism Spectrum Condition.

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 child's perspective.

Ethics and Dissemination: The study will run from September 2024 to January 2026. Health Research Authority approval is granted (REC Reference no. 24/LO/0410 | IRAS Project ID: 335623) for work package 2 and 3 involving the ethnography, with interviews and workshops.

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