Implementation challenges in end-of-life research with adults with intellectual and developmental disabilities

Abstract

Although the 4 million+ people in the U.S. with an intellectual or developmental disability (I/DD) experience close to the same life expectancy as those in the general population, end-of-life research including these individuals is lacking and can be difficult to implement. As will be described in this paper, it is possible to overcome barriers to successfully include people with I/DD in end-of-life research. In this paper, the implementation challenges, feasibility, and implications for successful end-of-life research with individuals with I/DD using focus groups are described. Individuals with I/DD were able to discuss their experiences and views about end-of-life care. However, while people with I/DD made valuable contributions to the focus groups, there were several modifications needed in order to execute this study. In order to gain a complete picture of end-of-life care for people with I/DD, it is imperative to include them in research to the best of their ability. By anticipating issues related to recruitment, the consent process, setting, and support needs of participants, focus groups can be successfully implemented.

How do People with Intellectual Disabilities in Norway Experience the Transition to Retirement and Life as Retirees?

“…Research on the transition to retirement has rarely included the voices of people with intellectual disabilities (Savage et al 2015). There is a need for increased knowledge about the challenges they face and how caregivers can help make the transition as smooth as possible.…”

Agency, social and healthcare supports for adults with intellectual disability at the end of life in out‐of‐home, non‐institutional community residences in Western nations: A literature review

“…Ideally, people with intellectual disabilities from other countries, as well as those with a range of illnesses such as heart disease, will also increasingly be included in this research. There are two current methodological articles that outline how to successfully include people with intellectual disabilities in sensitive research (Butler, Cresswell, Giatras, & Tuffrey-Wijne, 2012;Savage, Moro, Boyden, Brown, & Kavanaugh, 2015).…”

Intellectual Disabilities and Decision Making at End of Life: A Literature Review

“…The authors also discussed the need for support to be available if discussing this sensitive topic became emotionally overwhelming for the participants (Savage et al . ).…”

“…Savage et al . () discussed the challenges of obtaining consent from individuals with cognitive impairments that have not been coerced. Concepts such as death, end‐of‐life planning and grief were explained in numerous ways to participants yet whether comprehension was achieved was not able to be fully assessed.…”