title: 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 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.
authors.affiliation: University of Illinois at Chicago College of Nursing, Department of Women, Children and Family Health Sciences, 845S. Damen, Room 858, Chicago, IL 60612, USA. Electronic address: tsavag2@uic.edu.
authors.forename: Teresa A
authors.initials: TA
authors.lastname: Savage
authors.affiliation: University of Chicago, School of Social Service Administration, 969 E. 60th Street, Chicago, IL 60637, USA. Electronic address: moro@uchicago.edu.
authors.forename: Teresa Thalia
authors.initials: TT
authors.lastname: Moro
authors.affiliation: Capital Caring, Education Research, 2900 Telestar Court, Falls Church, VA 22042, USA. Electronic address: Jackelyn.boyden@gmail.com.
authors.forename: Jackelyn Y
authors.initials: JY
authors.lastname: Boyden
authors.affiliation: Department of Psychology, University of Illinois Urbana-Champaign, 603 E. Daniel St. (M/C 716), Champaign, IL 61820, USA. Electronic address: lisab@illinois.edu.
authors.forename: Allison A
authors.initials: AA
authors.lastname: Brown
authors.affiliation: Wayne State University College of Nursing, Family, Community, and Mental Health, 5557 Cass Avenue, Detroit, MI 48202, USA. Electronic address: Karen.kavanaugh@wayne.edu.
authors.forename: Karen L
authors.initials: KL
authors.lastname: Kavanaugh
mesh_terms: D000328:Adult; D035843:Biomedical Research; D002658:Developmental Disabilities / Q000235:genetics*; D017144:Focus Groups; D006801:Humans; D013727:Terminal Care
keywords: Intellectual disability; Research design; Terminal care