Beyond Custodial Care: Mediating the Possibilities for Meaningful Participation in an Institutional Setting

BACKGROUND AND PURPOSE: Institutionalized adults with intellectual disabilities (ID), a disability community who has a long history of enduring grave injustices and whose voices have been absent in occupational therapy discourse, continue to face barriers to meaningful participation in occupation (Mahoney, Roberts, Bryze, & Parker Kent, 2016). Additionally, adults with ID are impacted by policies designed with inconsistent and contradictory values influenced by the concurrent adoption of principles from various models of practice and constructions of disability (Channon, 2014); therefore, there is a need to better apprehend how opportunities for meaningful participation for adults with ID are situated within and influenced by these systems and ruling relations. This paper draws on data from an institutional ethnographic study aimed to make visible the interrelational ways national, state, and local policies mediate the possibilities for meaningful participation in occupation for adults with ID.

DESIGN AND METHOD: Institutional ethnography (Smith, 2005) was used as the social theory and methodology for this study. The aim of institutional ethnography is to make visible the systems and social relationships through which occupations emerge and are coordinated (Prodinger, Rudman, & Shaw, 2015). Data were collected at a residential facility. Participants included seven adults diagnosed with profound ID and eight adult staff members. Participant observation, ethnographic interviews, and text work were the main sources of data. Narrative analysis was used to systematically relate meanings and interpretations of participants’ experiences to particular narratives on work in an institutional setting. Conceptual mapping, as a second analytic process, was used to analyze institutional practices and connect them back to the policies that coordinated work and other activities of the center (Campbell & Gregor, 2004).

RESULTS: Analyses revealed that the systems and structures through which staff work was coordinated created a systematic regulation of participation in meaningful occupation. More specifically, analyses demonstrated how institutional policies placed greater value on routinization and efficiency over self-determined participation. These findings not only highlight the lack of opportunities for residents and staff to incorporate occupations of their choosing; they call attention to the ways institutional routinization is a perpetuation of the historical notions of what adults with ID should do.

CONCLUSION AND IMPACT STATEMENT: This study contributes enhanced knowledge about the lived experiences of institutionalized adults with ID and how opportunities to participate in occupations are supported or thwarted by textually mediated social practices. It also challenges the profession’s theoretical assumptions on participation.

References

Campbell, M., & Gregor, F. (2004). Mapping social relations: A primer in doing institutional ethnography. Walnut Creek, CA: Alta Mira Press.

Channon, A. (2014). Intellectual disability and activity engagement: Exploring the literature from an occupational perspective. Journal of Occupational Science, 21, 443–458. https://doi.org/10.1080/14427591.2013.829398

Mahoney, W., Roberts, E., Bryze, K., & Parker Kent, J. (2016). Brief Report—Occupational engagement and adults with intellectual disabilities. American Journal of Occupational Therapy, 70, 7001350030. https://doi.org/10.5014/ajot.2016.016576

Prodinger, B., Rudman, D. L., & Shaw, L. (2015). Institutional ethnography: Studying the situated nature of human occupation. Journal of Occupational Science, 22, 71–81. https://doi.org/10.1080/14427591.2013.813429

Smith, D. (2005). Institutional ethnography: A sociology for people. Toronto: Alta Mira Press.