This work was supported by a grant from Shalem Fund
This study examined the experiences of people with intellectual disabilities (ID) who have cancer by eliciting their voices. Eighteen participants aged 30–78 and diagnosed with mild to moderate ID and various types of cancer were interviewed. Most participants had received limited medical information, which was sometimes withheld from them, leading to feelings of confusion and lack of control. Participants described fear of death, surgery, and treatment—yet most did not share their fear with caregivers or healthcare staff members. Some participants concealed their illness from friends. Nonetheless, participants also reported significant support from family members and residential staff members. The findings highlight the need for accessible medical information, tailored emotional support, and training for medical and psychosocial support teams to promote empathetic and respectful communication that will empower people ID who have cancer and improve their quality of life.
Keywords: intellectual disabilities, cancer, medical information, illness experience, coping, support, concealment
The English Abstract>>