Title

Community based research: Stigma experiences in the context of living with bipolar disorder

Start Time

22-10-2011 8:30 AM

End Time

22-10-2011 9:00 AM

Session Type

Event

Abstract

Background: Stigma is a multifaceted construct that functions to differentiate people in a negative way and can precipitate social exclusion and discrimination. The stigma construct is delineated as structural (policies, practices), public (societal), and internalised (self) (1). Stigma has the power to restrict opportunities for people to engage in occupations that they need and/or want to do.

Mental illnesses are profoundly stigmatized conditions and research studies have indicated that bipolar disorder (BD) is no exception to this (2, 3). Quantitative studies have suggested that stigma experiences are common in BD and that perceived stigma can have serious implications for behaviors and well-being outcomes. Further knowledge is warranted to learn how stigma is experienced by individuals with BD and their family members.

Research objective: To explore the understandings and experiences of stigma from the perspectives of individuals with BD and their family members.

Methods: Participants were recruited through web sites, community newspapers, and networking. The study received ethics approval and was embedded within a BD community consultation day. A sample (n=46) of adults living with BD, their support persons and health care providers were assigned to one of five co-facilitated, structured focus groups. Three of the groups comprised people living with BD. Openended questions such as: ‘Can you tell us about your experiences of stigma’ encouraged participants to share their stories. Data from 1.5-2 hour focus groups were audio recorded, transcribed and analyzed inductively by the research team. Team members completed network analyses individually and refined their analyses through group meetings.

Results: The findings illuminate the three aspects of stigma. One theme describes experiences of selfstigma and their impact on the lives of people with BD. The second theme illustrates how the foundation of social stigma is maintained and the ways it shapes quality of life. A third theme focuses on the exclusionary practices that restrict people’s opportunities at the structural stigma level.

Conclusion: Stigma constrained the expected participation of people with BD in social relationships, employment, and education. Stereotypes and discrimination played a major role in creating a ‘less than’ experience of desired occupations. Individuals, institutions and society were the source of these injustices and are the site of potential changes. Community-based research and qualitative methods are promising approaches for developing occupational science knowledge.

Objectives for the Discussion Period:

  1. Use the stigma findings to prompt dialogue about the role of occupations and social inclusion.
  2. To discuss challenges involved in conducting and disseminating community-based qualitative research, and identify strategies for improvement.

References

Link, B.G., & Phelan, J.C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 383-385. http://dx.doi.org/10.1146/annurev.soc.27.1.363

Michalak, E.E., Yatham, L.N., Kolesar, S., & Lam, R.W. (2006). Bipolar disorder and quality of life: A patient-centered perspective. Quality of Life Research, 15(1), 25-37. http://dx.doi.org/10.1007/s11136-005-0376-7

Angermeyer, M.C., Beck, M., Dietrich, S., & Holzinger, A. (2004).The stigma of mental illness: Patients' anticipations and experiences. International Journal of Social Psychiatry, 50(2), 153-162. http://dx.doi.org/10.1177/0020764004043115

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Research paper

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Oct 22nd, 8:30 AM Oct 22nd, 9:00 AM

Community based research: Stigma experiences in the context of living with bipolar disorder

Background: Stigma is a multifaceted construct that functions to differentiate people in a negative way and can precipitate social exclusion and discrimination. The stigma construct is delineated as structural (policies, practices), public (societal), and internalised (self) (1). Stigma has the power to restrict opportunities for people to engage in occupations that they need and/or want to do.

Mental illnesses are profoundly stigmatized conditions and research studies have indicated that bipolar disorder (BD) is no exception to this (2, 3). Quantitative studies have suggested that stigma experiences are common in BD and that perceived stigma can have serious implications for behaviors and well-being outcomes. Further knowledge is warranted to learn how stigma is experienced by individuals with BD and their family members.

Research objective: To explore the understandings and experiences of stigma from the perspectives of individuals with BD and their family members.

Methods: Participants were recruited through web sites, community newspapers, and networking. The study received ethics approval and was embedded within a BD community consultation day. A sample (n=46) of adults living with BD, their support persons and health care providers were assigned to one of five co-facilitated, structured focus groups. Three of the groups comprised people living with BD. Openended questions such as: ‘Can you tell us about your experiences of stigma’ encouraged participants to share their stories. Data from 1.5-2 hour focus groups were audio recorded, transcribed and analyzed inductively by the research team. Team members completed network analyses individually and refined their analyses through group meetings.

Results: The findings illuminate the three aspects of stigma. One theme describes experiences of selfstigma and their impact on the lives of people with BD. The second theme illustrates how the foundation of social stigma is maintained and the ways it shapes quality of life. A third theme focuses on the exclusionary practices that restrict people’s opportunities at the structural stigma level.

Conclusion: Stigma constrained the expected participation of people with BD in social relationships, employment, and education. Stereotypes and discrimination played a major role in creating a ‘less than’ experience of desired occupations. Individuals, institutions and society were the source of these injustices and are the site of potential changes. Community-based research and qualitative methods are promising approaches for developing occupational science knowledge.

Objectives for the Discussion Period:

  1. Use the stigma findings to prompt dialogue about the role of occupations and social inclusion.
  2. To discuss challenges involved in conducting and disseminating community-based qualitative research, and identify strategies for improvement.