Towards Inclusive Colorectal Cancer Screening: Experiences and Needs of Adults With Intellectual Disabilities

People with intellectual disabilities (ID) face significant barriers to healthcare and preventive cancer care, resulting in delayed cancer diagnosis and higher mortality rates. There is limited understanding of the factors that influence their participation in colorectal cancer (CRC) screening, particularly from their own perspectives. This study aimed to identify the barriers, facilitators, and needs of people with ID for an inclusive CRC screening programme from their own experiences and viewpoints.

Semi-structured qualitative interviews and focus groups (N = 31) were conducted with adults with ID in Austria. Interviews and group discussions were audio recorded and transcribed verbatim. Thematic analysis was used as a flexible method to analyse the data.

Five themes were identified from the data with each consisting of two to four sub-themes: (1) independence within individually adjusted scopes of arrangement and decision-making, (2) 'When it comes to health, I do it', (3) enhancing wellbeing, (4) seeing the person first, then their ID, and (5) deficits in resources and the healthcare system.

The findings reveal significant barriers to healthcare and preventive cancer care for people with ID. The following practical implications were derived: Eliminating discrimination, improving accessibility, designing appropriate information and educational materials, implementing mandatory ID-specific training for health professionals, considering the importance of emotions and implementing ID-appropriate health services. Considering these aspects when developing inclusive cancer screening programmes is of paramount importance to promote equitable health and cancer prevention, especially for marginalised and vulnerable groups.