Navigating cancer treatment in people with intellectual disability: a qualitative study of professionals’ and family members’ perspectives

Cancer occurs in people with intellectual disability (ID) as frequently as in the general population. However, successful cancer treatment is less likely in people with ID, and the underlying reasons are not well-documented. Here we investigated the perspectives of health care professionals (HCPs) and family members regarding cancer care delivery and challenges for people with ID, with the aim of identifying the barriers and facilitators to care. Semi-structured interviews were conducted with professionals and family members involved in cancer care for adults with ID. The obtained data were subjected to thematic analysis. Thirty-seven interviews were analyzed. Ten barriers to care were identified, four of which emerged from the participants’ accounts. The main identified barriers to care were related to patients’ limitations (psychological, physical, and treatment non-agreement), communication difficulties (i.e., with the patient, or between professionals or institutions), professionals’ lack of knowledge, and advanced cancer stage at diagnosis. Facilitating circumstances were also identified—which included any presence of a proactive family member or professional caregiver, presence of a proactive family member or caregiver throughout the course of treatment, the patient having a confident and positive attitude, and tailored environment. While barriers related to patient characteristics are unmodifiable, it may be possible to improve professionals’ knowledge, communication skills, the patient’s environment, and diagnostic delays. Thus, many obstacles that complicate cancer treatment for people with ID, and those who care for them, can be alleviated to potentially improve cancer prognosis in this vulnerable population.