Exploring Cancer Prevention Challenges for People with Intellectual Disabilities: Perspectives from Family Caregiver

Abstract

Background: Cancer prevention is a crucial public health strategy, with 30–50% of cancers being preventable through early screening and lifestyle modifications. However, people with intellectual disabilities (PWID) face significant barriers to cancer prevention services, leading to delayed diagnoses and poorer outcomes. Family caregivers play a key role in bridging the healthcare access gaps for PWID, but there is limited research exploring their perspectives on cancer prevention. This study examined the needs, challenges, and strategies family caregivers employ in cancer prevention for PWID, framed within Bronfenbrenner’s ecological systems theory. Methods: A mixed methods sequential explanatory design was used. Quantitative data were collected through a structured questionnaire from 41 caregivers of PWID, followed by qualitative semi-structured interviews with 15 caregivers to explore the quantitative findings further. Data were analysed using descriptive statistics, chi-square tests, and thematic content analysis. Results: The study revealed that 75.6% of caregivers had not received information about cancer prevention for PWID, and 63.4% did not regularly coordinate cancer screenings. Barriers identified included a lack of accessible information, logistical challenges, and emotional strain. However, 80.5% of caregivers expressed a need for additional training to support their roles in cancer prevention. Qualitative findings highlighted four key themes: promoting a healthy lifestyle, access to healthcare services, health literacy, and psychosocial support. Conclusions: The findings emphasise the need for tailored cancer prevention strategies and educational resources for caregivers of PWID. Addressing these gaps requires systemic changes in healthcare practices, better coordination of services, and enhanced support for caregivers to reduce the barriers to cancer prevention for PWID.