Healthcare disparities in colorectal cancer prevention for people with intellectual and developmental disabilities: A caregiver perspective

BACKGROUND: Colorectal cancer (CRC) screening is crucial for early detection, but people with intellectual and developmental disabilities (IDD) face significant healthcare disparities, including lower screening rates. OBJECTIVE: This study explores barriers and facilitators to CRC screening for individuals with IDD from the caregiver perspective. METHODS: Semi-structured interviews were conducted with 13 caregivers (eight women, mean age 45) of individuals with IDD in Austria and analyzed using thematic analysis. A modified version of the Bowel Cancer Awareness Measure (CAM) questionnaire was used to assess CRC-related healthcare literacy of the caregivers. RESULTS: The modified CAM revealed low CRC knowledge among caregivers, with gaps in symptom and risk factor recognition and low self-reported confidence in symptom detection. Four themes emerged from the interviews: (1) Improving access to inclusive healthcare, highlighting systemic healthcare challenges, inclusive environments, clinician expertise, and health education; (2) Managing IDD-specific challenges, including communication difficulties, reliance on routines, and comorbidities; (3) The critical role of caregiver support, focusing on the empowerment of people with IDD; and (4) Challenging stigma and bridging social gaps, addressing stereotypes and social segregation of people with IDD. CONCLUSIONS: This study serves as a case study, illustrating how the exclusion of people with IDD from the design of preventive healthcare perpetuates inequities in CRC screening, and emphasizing the need for more inclusive systems and practices. Addressing these shortcomings requires improved knowledge and educational resources, disability-sensitive training for professionals, accessible healthcare environments and systemic efforts to promote autonomy and reduce stigma.