Oncology Nursing Care for Persons With Intellectual Disabilities: Are We There Yet?

Globally, there is an increasing prevalence of disabilities. Persons with disabilities face specific challenges and often encounter different barriers to quality care. Professionals often view making high-quality care available to this population as challenging because of clients’ disability-related limitations in their social, environmental, cognitive, behavioral, and communication capacities.1 Interestingly, legal and political components are associated with the healthcare of persons with disabilities. Despite the appreciable improvements in the provision and access to social amenities such as transportation, employment, and access to health occasioned by the Americans With Disability Act of 1990, the quality of care this population receives is often overlooked. Discussions around cancer care for persons with intellectual disabilities have not received significant attention in healthcare. There is a paucity of high-quality research addressing this subject matter; consequently, people with intellectual disabilities and their families are not adequately represented within the currently available evidence. As such, it is challenging to fully appreciate the prevalence and impact of intellectual disabilities on healthcare needs and the corresponding barriers and facilitators experienced by this population. Although the report shows that cancer-related mortality rates in persons with intellectual disabilities are lower than in the general population,2 this relatively lower mortality rate can, however, be generally attributed to the lower life expectancy of people with intellectual disabilities and the fact that the incidence of cancer is highest in the older population. Interestingly, advancement in social and care services has improved longevity for all groups of people, including individuals with disabilities. Thus, more people with intellectual disabilities are essentially expected to live longer, thereby multiplying their chances of being diagnosed with cancer based on age factors. Nevertheless, the incidence of new cancer diagnoses and recorded deaths in this population deserve considerable attention from stakeholders. My argument in this editorial is that oncology and cancer care professionals must consider people with intellectual disabilities when designing cancer screening, prevention, treatment, survivorship, hospice, and palliative care programs. For example, breast self-examination, testicular self-examination, and other bodily self-awareness measures are proven ways to detect cancer at early stages. However, people with intellectual disabilities may be unable to express their concerns when they have any abnormality in their body. Therefore, family and other informal caregivers must be equipped with the proper knowledge and skills to help identify any abnormal growth in the body of the person with disabilities. When a person with a disability is diagnosed with cancer, the treatment process is often challenging due to communication gaps. For example, a study conducted among nurses who cared for cancer patients showed that oncology nurses felt less comfortable communicating with cancer patients with intellectual disabilities and were concerned that the needs of this group of cancer patients were not adequately identified and met.3 Moreover, because healthcare professionals often rely on patient’s subjective reports to determine the need for and effectiveness of pain management, it becomes challenging to adequately manage pain when a patient cannot verbally communicate their symptoms, which requires a particular skill from the nurses to identify that pain may be communicated in atypical ways in individuals with cognitive disabilities. However, the oncology nursing curriculum content designated for caring for cancer patients with disabilities is grossly inadequate to meet the dynamic needs of this patient population. Therefore, a critical point is for oncology nurses to be exposed to special training in caring for cancer patients with intellectual disabilities. Special training can boost oncology nurses’ confidence and enhance the quality of nursing care delivered to these patients. In addition, I am proposing the establishment of a sub-specialty/sub-specialty training for oncology nurses with a specialized focus on providing person-centered care directed at the delivery of care tailored to the specific needs of persons with intellectual disabilities. Addressing cancer care inequalities for people with intellectual disabilities constitutes a vital and urgent international priority. Future research programs should focus on establishing measurable outcome indicators specifically related to the needs of cancer patients with intellectual disabilities. In addition, research must involve people with intellectual disabilities and their family members as active participants to foster a holistic understanding of the inequalities experienced by this population and of their priorities, perspectives, and expectations of person-centered oncology nursing care.