Center for End-of-Life Transition Research (CEoLTR)

Projects

Project #3 (Dr. Savage)

End of Life Care f or pe ople with Intellectual and Devel opmental Disabilities

PI (Dr. Savage)

While over 4 million people in the U.S. have an intellectual or developmental disability (I/DD), they are a disenfranchised group in the health care system and many of these individuals are left out of decision-making regarding their own health care, especially at the end of life. The current status of end of life care for individuals with I/DD is not well understood. Using an exploratory, descriptive design we will employ a qualitative approach using focus groups and individual in-depth interviews to describe dimensions of care experienced near the end of life (EOL) and desired dimensions of a respectful death for individuals with I/DD. The purpose of this study is to describe: dimensions of care experienced near the end of life for individuals with I/DD; desired level of advance care planning and approaching death dimensions of respectful death; and, perceived facilitators and barriers to the desired respectful death. We will use focus groups and one-on-one interviews with 45 participants (9 groups with 5 participants each). We will conduct three focus groups with each of the following: direct support staff caregivers, family caregivers and persons with I/DD. Focus group participants who are identified as direct support staff caregivers will be chosen based on the following criteria: at least 18 years of age, English speaking, provides direct care to persons with I/DD and as been involved in the care of a recently deceased (within 2 years) person with I/DD. The family caregivers will be at least 18 years of age, English speaking, and have provided care to a recently deceased (between 3 months and 2 years prior) adult with I/DD. Individuals with I/DD must be: at least 18 years of age; English speaking; a user of I/DD agency services; capable of giving informed consent or assent if person has legal guardian; has been screened by agency staff for ability to participate in small group discussion on this topic; and, has experienced the recent death (between 3 months - 2 years prior) of a loved one. In-depth interviews will be conducted with 30 individuals from the focus groups who have additional information and/or individuals identified in the focus group but who were not participants. Analysis of data will be two fold. After the first focus group, an ongoing, iterative analysis will be done to refine and add questions regarding new information yielded from the first group. Data will also be analyzed for themes relating to the information obtained in both the focus groups and individual interviews. The data obtained from this study will be used in a subsequent intervention study. This study will contribute to the growing body of literature and it will make a unique contribution by conducting focus groups of individuals with I/DD, family and direct support staff caregivers regarding perceptions of end-of-life care. By better understanding what facilitates or inhibits quality end of life care we will be able to ascertain areas in which to improve care from both an individual and caregiver perspective.