Objectives/purpose:
People with intellectual disability experience persistent barriers to accessing and receiving appropriate cancer care, leading to poorer cancer-related outcomes than the general population. This scoping review aimed to identify and examine peer-reviewed research exploring the cancer survivorship experiences of people with intellectual disability from their perspectives following their own cancer diagnosis.
Procedures:
A scoping review was conducted following the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. A comprehensive search identified 1,239 studies, of which eight met the eligibility criteria and were included in the final review.
Sample and setting:
Of the eight studies included, all were conducted in the UK between 2007 and 2016. Across these studies, a total of 20 participants with intellectual disability were represented, including 12 women and eight men, with a mean age of 53.6 years (range: 34–76). All studies used qualitative methods.
Results:
Three themes were constructed in the synthesis: (1) Include me, (2) My real feelings, and (3) Having the right help. These themes highlight the emotional, communication, and support needs as voiced by people with intellectual disability during cancer survivorship. However, experiences, needs and preferences outside the UK remain unexplored.
Conclusion and clinical implications:
This is the first review to summarise research on the cancer survivorship experiences of people with intellectual disability from their own perspectives. A larger, international evidence base is urgently needed to inform equitable cancer care systems and address the needs of people with intellectual disability.