Illness experiences of people with intellectual disabilities facing cancer: A qualitative study

People with intellectual disabilities (PWID) experience substantial disparities across the cancer care continuum, including delayed diagnosis, communication barriers, and unequal access to information and support. Little is known about the illness experiences of PWID facing cancer.

This study explored the illness experience of PWID and cancer and elicited their illness narratives, with particular attention to their perceptions of cancer, communication about the disease, and the support they received from healthcare professionals, residential staff, and family.

Semistructured, linguistically adapted interviews were conducted with 18 PWID diagnosed with cancer. Reflexive thematic analysis was applied. Interviews were adapted to remove communicative barriers and structured at a pace that minimized anxiety.

Four themes emerged: (a) perceptions of cancer-participants seldom used the word "cancer," describing illness through bodily sensations, treatments, or vague terms; (b) emotional responses to cancer-dominated by fear of death, yet participants reported few opportunities to express or discuss these emotions; (c) Impact of cancer on life after treatment -participants reported changes in body, functioning, and dependence, with varied life disruptions; and (d) social reactions-support from family and others was meaningful, but concealment of the illness was often encouraged, reinforcing silence and isolation.

Across these accounts, a lack of accessible information and limited emotional dialogue shaped experiences of loneliness and silence. The findings underscore the need for cancer care practices that prioritize accessible communication, emotional engagement, and inclusion of PWID as active participants in their care.