Daily Life Participation in a Residential Facility for Adults with Intellectual Disabilities: An Institutional Ethnography

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  • March 21, 2019
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  • Johnson, Khalilah
    • Affiliation: School of Medicine, Department of Allied Health Sciences, Division of Occupational Science and Occupational Therapy
Abstract
  • The overall aim of this dissertation was to determine how the daily operations and institutional structures of an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID) coordinate what residents and staff do. The specific aims were to (1) identify and describe the daily operations and institutional practices of the facility; (2) identify and describe the activities of the residents and staff; and (3) identify and describe how the opportunities for residents to choose and participate in meaningful activities were affected by institutional operations and culture. Institutional ethnography was applied as a social theory and methodology. Data were collected over 14 weeks with seven residents with profound ID and eight staff members. Data collection methods included participant observation, ethnographic interviewing, and text work. Conceptual mapping and narrative analysis were employed as iterative and reflexive processes to systematically extract narrative threads that depicted the complex nexus through which access to and participation in daily life activities emerged. This dissertation is comprised of three manuscripts that form a narrative that describe the systemic ways in which front-line work and habilitative care are organized, its impact on residents’ choices, and the challenges it poses on moral obligation and self-governance for staff members. Specifically, Manuscript I (Chapter 4) makes visible the inter-relational ways national, state, and local policies mediate the possibilities for staff to incorporate meaningful participation in occupation in daily interactions with residents; Manuscript II (Chapter 5) explores how choice-making during meal and snack times is problematized and misrepresented as manipulative behavior by staff; and Manuscript III (Chapter 6) argues that staff participate in various circuits of accountability, and negotiating between those circuits poses significant challenges to their moral commitments to residents and their self-governance. This dissertation interrogates the effects of institutional living on the development and participation in daily life for adults with ID and the implementation of habilitative training and personal care. This dissertation also moves forward the dialogue on choice, human rights, habilitative care, and quality of life for adults with ID; additionally, this dissertation adds to the conceptualization of occupation and challenges theoretical assumptions on participation in occupational science.
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  • In Copyright
Advisor
  • Boyd, Brian
  • DeVault, Marjorie
  • Bagatell, Nancy
  • Trent, James
  • Humphry, Ruth
Degree
  • Doctor of Philosophy
Degree granting institution
  • University of North Carolina at Chapel Hill Graduate School
Graduation year
  • 2016
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Date uploaded
  • June 30, 2017

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