Grant: Project Grant

Many adults with intellectual or developmental disabilities aren't diagnosed with cancer until it is too late for a cure and need good quality end-of-life care. Our other work suggests adults with intellectual or developmental disabilities die quickly after a cancer diagnosis and aren't getting the same cancer directed care, as adults without intellectual or developmental disabilities. Given the lack of information to guide healthcare providers and caregivers of adults with intellectual or developmental disabilities and cancer, we are concerned they may also be experiencing differences in cancer care at the end-of-life. Our team will include researchers from different areas, like cancer, and disability studies. We will collaborate with adults with IDD, and their caregivers. Using data collected during healthcare encounters, we will describe end-of-life care and identify who is receiving good care among adults with IDD. We will also identify what factors lead to better or worse care. We will then compare the end-of-life cancer care for adults with intellectual or developmental disabilities have received to those without intellectual or developmental disabilities. We also plan to speak with adults with intellectual or developmental disabilities, their family, and their caregivers to explore what they consider to be good end-of-life cancer care. A lot of people with intellectual or developmental disabilities die from cancer but there is not enough research exploring end-of-life cancer care for adults with intellectual or developmental disabilities. This research will help how end-of-life care is delivered to adults with intellectual or developmental disabilities, because all people should be able to take control of their cancer care when approaching death.