Routinely excluded from participating in research on topics that affect their lives, the viewpoints of people with intellectual disabilities are still unrepresented on topics related to death and dying. With a focus on the topics explored in the limited amount of literature, this entry seeks to provide a broad overview of the data collection methods utilized when working with participants with intellectual disabilities on topics related to death and dying. Interviews, focus groups, and observation were the most frequently used methods, often in combination with one another. The use of semistructured interview questions and images was also a popular choice. Future research can use visual methods to include people with severe to profound intellectual disabilities. Death is a multifaceted topic, and we have only just scratched the surface with regards to research on the subject that includes the opinions and lived experiences of this population. In highlighting the topics represented across the literature and data collection methods that have already been utilized, this entry serves as a reference for future researchers who want to undertake qualitative research on this topic and provides guidance on future steps ahead.

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Qualitative Methods in Studying Death and Dying among Individuals with Intellectual Disabilities

  • Marissa A. Diaz

摘要

Routinely excluded from participating in research on topics that affect their lives, the viewpoints of people with intellectual disabilities are still unrepresented on topics related to death and dying. With a focus on the topics explored in the limited amount of literature, this entry seeks to provide a broad overview of the data collection methods utilized when working with participants with intellectual disabilities on topics related to death and dying. Interviews, focus groups, and observation were the most frequently used methods, often in combination with one another. The use of semistructured interview questions and images was also a popular choice. Future research can use visual methods to include people with severe to profound intellectual disabilities. Death is a multifaceted topic, and we have only just scratched the surface with regards to research on the subject that includes the opinions and lived experiences of this population. In highlighting the topics represented across the literature and data collection methods that have already been utilized, this entry serves as a reference for future researchers who want to undertake qualitative research on this topic and provides guidance on future steps ahead.