Dissertation/Thesis Abstract

A Retrospective Study of the Last Year of Life for People with Intellectual Disabilities in Community Residences
by McGinley, Jacqueline Marie, Ph.D., State University of New York at Buffalo, 2018, 162; 10823247
Abstract (Summary)

Death is inevitable for all; however, the nature of that death varies significantly across subsets of the American population with the opportunity to die well often reserved for the privileged and abled. In the last ten years, there has been increasingly more attention paid to issues surrounding serious illness and end-of-life care for adults with intellectual disabilities (IDs). However, care for this population remains fraught with complex challenges and wanting for best practices and standards. Further, research seeking to identify the complexity of issues faced in the provision of end-of-life care for this population, particularly in the United States, is scarce and often biased toward the perspective of caregivers.

This multiple-case study sought to explore and describe the illness trajectory and differential end-of-life experiences of adults with IDs within the last year of life in diverse community residences operated by one provider agency in New Jersey. Retrospective data from three sources (records, staff, surrogates) was collected sequentially and triangulated via within and cross-case analyses.

This study offers a meaningful contribution to the extant literature by elucidating the last year of life for adults with IDs in community residences. It offers insights into how people with co-occurring IDs and serious illness diagnoses experience their final year, month, week, and moments of life. This study integrated staff and surrogate perspectives with archival data to illustrate the differential experiences that facilitate and impede the ability of people with IDs to die well.

Indexing (document details)
Advisor: Waldrop, Deborah P.
Commitee: Critelli, Filomena M., Persons, Kimberley, Somayaji, Darryl
School: State University of New York at Buffalo
Department: Social Work
School Location: United States -- New York
Source: DAI-A 79/10(E), Dissertation Abstracts International
Subjects: Disability studies, Gerontology, Social work
Keywords: Aging, Community residences, End-of-life, Illness trajectories, Intellectual disabilities
Publication Number: 10823247
ISBN: 9780438049055
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