Experiences of RT involving adults with Intellectual Disabilities V1
Research type
Research Study
Full title
An investigation of the process of Radiotherapy as perceived by people with an Intellectual Disability who have cancer, their family members, paid carers, and the professionals that support them: A Constructivist Grounded Theory Study.
IRAS ID
324949
Contact name
Charlotte Nutting
Contact email
Sponsor organisation
Sheffield Hallam University
Duration of Study in the UK
1 years, 5 months, 1 days
Research summary
In England and Australia, people with Intellectual Disabilities (ID) are living longer however their mean life expectancy is significantly reduced, and they are three-times more likely to die from an avoidable medical cause of death (University of Bristol, 2021). The incidence of cancer amongst people with ID is increasing (Public Health England, 2019) and advanced stage cancer diagnoses (Heslop et al., 2022) and fewer invasive cancer treatments (Boonman et al., 2022) are documented. People with ID are often excluded from conversations about their cancer care (Abdulla & Spassiani, 2021) (NHS England, 2022) and research about Radiotherapy decision-making, treatment and post-treatment support involving people with ID is limited.
Interviews with adults who have ID, paid carers, family and healthcare, social care and medical professionals in England and Metropolitan Melbourne, Australia will explore how the Radiotherapy pathway is: 1) experienced by people who have ID and cancer, and 2) perceived by family, paid carers, and professionals who support people with ID who have cancer.
Principal research questions:
1. How is the Radiotherapy pathway experienced by people who have Intellectual Disabilities and cancer?
2. How is the Radiotherapy pathway perceived by family members, paid carers, and healthcare, social care and medical professionals who support them?Data collection and analysis of interview data and Radiotherapy documents will be undertaken side-by-side and will support the development of a framework to optimise Radiotherapy decision-making, treatment and post-treatment support involving people with ID who have cancer. The framework will facilitate the empowerment and inclusion of people with ID to be active participants in their cancer care. The framework will detail factors that enable: 1) family members and paid carers in their supportive role, and 2) professionals to optimise the process of Radiotherapy, and the transition to life beyond cancer treatment, for and with people with ID.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
23/LO/0736
Date of REC Opinion
10 Nov 2023
REC opinion
Further Information Favourable Opinion