Cancer information needs of people with intellectual disability: A review of the literature

The lifespan of people with an intellectual disability has increased significantly in recent years; however, this has resulted in a rising incidence of age-related illnesses including cancer. The World Health Organisation has expressed concern as evidence suggests prevalence rates for cancer are increasing for this group. The needs of people with a cancer diagnosis and an intellectual disability are beginning to be highlighted; however, there appears to be a substantial dearth of services including appropriate cancer information. This presents alarming obstacles and barriers to high-quality cancer care impacting on treatment, management and overall survival rates for this client group. Furthermore, a number of policy and research reports directed at the health needs of people with an intellectual, disability have continually highlighted the need for accessible information and effective communication. Having access to cancer information should be considered a crucial part of providing optimum holistic care for this client group. Cancer professionals should assess the unique information needs of people with an intellectual disability as mainstream information does not meet their requirements. Furthermore, health professionals working in intellectual disability settings must also address their knowledge and information deficits in this regard. This paper presents a review of the literature with a specific focus on the cancer information needs of people with an intellectual disability. (C) 2008 Elsevier Ltd. All rights reserved.