ABSTRACT
Background
People with intellectual disabilities face inequities across the cancer care continuum. Barriers in communication and healthcare accessibility contribute to late-stage cancer diagnoses and poorer outcomes. People with intellectual disabilities are often excluded from cancer research. This study presents a researcher-led interpretive analysis of participant-generated artwork to explore what being involved in cancer research means to them.
Methods
Drew and Guillemin’s three-stage framework (participant engagement, researcher engagement and re-contextualising) was utilised. Twenty-four artworks completed by people with intellectual disabilities were thematically analysed for common themes about cancer research and examined for visual characteristics. Themes were identified and, through researcher-led interpretation and re-contextualisation, patterns linked to inequities surrounding cancer research for people with intellectual disabilities.
Results
Five themes were identified: empowerment, positivity, inclusion, science and discovery and community and togetherness. These themes were developed based on recurring symbols such as hand holding and microscopes, as well as keywords such as ‘cancer research for all’ and ‘we hold the key’. Suggestions for increased inclusion in cancer research, screening, and treatment structures include encouraging self-advocacy, positive communication, accessible healthcare frameworks, easy-read and accessible materials and support groups.
Conclusions
Participant-generated artwork provides a creative means through which people with intellectual disabilities can express perspectives on inclusion in cancer research. This study offers insight into how cancer research and health care can be better attuned to people with intellectual disabilities. Overall, the visual arts are a unique method to amplify the voices of people with intellectual disabilities and promote inclusion in cancer research more broadly.