Dataset Information

Persons with disabilities as experts-by experience: using personal narratives to affect community attitudes in Kilifi, Kenya.

ABSTRACT:

Background

The last decade has seen improved public awareness of disability in sub-Saharan Africa. However, negative and stereotypical views of disability still persist in many communities. We conducted a study to promote awareness of disability in rural Kenya, using a process of reflection and education. This paper reports on the second aspect - education. The research question was: How can personal narratives of living with disability affect community attitudes and responses to disability?

Methods

A qualitative phenomenological approach was adopted. Twenty community-based groups involving 249 participants took part. Each group participated in one focus group discussion at baseline, to explore the members' personal experiences and views of disability. The intervention involved three adults with disabilities sharing their personal narratives with each group. After the intervention, repeat focus group discussions were conducted with each group. Thematic analysis was carried out according to the framework method.

Results

The emergent framework consisted of four main themes, organised as opposing constructs: 'burden' and 'agency', 'sub-human' and 'human'. 'Burden' focused on the perceived hopelessness of the situation. Post-intervention revealed greater support for the 'agency' of persons with disabilities, evidenced by what the person could do, rather than their inability, and the relevance of support. The 'sub-human' to 'human' construct captured dehumanising and discriminating practice towards persons with disabilities on one side, and recognition of the person and inclusion in the community on the other. Whilst support and empathy were evident at the pre-intervention stage, post-intervention revealed greater recognition of people with disabilities as fellow human beings.

Conclusion

This study provides a proof of concept regarding the deployment of persons with disabilities as agents for change. Exposure to experts-by-experience provided community groups with opportunities to reflect on, examine and adjust their views on disability in this rural part of Kenya. The sharing of personal narratives appeared to resonate with group members, to encourage recognition of the person and not just the disability, and to move their resolve toward ideas for collective action. Further research is needed to assess the effects of such interventions.

SUBMITTER: Gona JK

PROVIDER: S-EPMC5941597 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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Publications

Persons with disabilities as experts-by experience: using personal narratives to affect community attitudes in Kilifi, Kenya.

Gona Joseph K JK Newton Charles R CR Hartley Sally S Bunning Karen K

BMC international health and human rights 20180508 1

<h4>Background</h4>The last decade has seen improved public awareness of disability in sub-Saharan Africa. However, negative and stereotypical views of disability still persist in many communities. We conducted a study to promote awareness of disability in rural Kenya, using a process of reflection and education. This paper reports on the second aspect - education. The research question was: How can personal narratives of living with disability affect community attitudes and responses to disabil ...[more]

PMID: 29739403

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Project description:Introduction: Persons with mental illness experience social life restriction and stigma that may have implications for their work ability. The aims of this study are (i) to report experienced and anticipated discrimination and social functioning in persons with mental disabilities in Kenya and (ii) to investigate the association between experienced and anticipated discrimination, social functioning, and employment in this population. Materials and Methods: Cross-sectional study design where we randomly recruited 72 persons with mental illness through two networks of persons with psychosocial disabilities in Kenya. Experienced and anticipated discrimination were measured using the Discrimination and Stigma Scale version 12 (DISC 12) while social functioning was measured using the Social Functioning questionnaire (SFQ). Results: Experienced discrimination was reported by 81.9% in making or keeping friends, 69.7 and 56.3% in finding or keeping job, respectively, and 63.3% in dating or having an intimate relationship. Anticipated discrimination stopped 59.2% from applying for work, 40.8% from applying for education or training courses, and 63.4% from having a close personal relationship. Females reported an overall higher experienced discrimination than males. Unemployed participants had slightly increased rates of experienced and anticipated discrimination (9.5 vs. 9.1 and 2.5 vs. 2.3, respectively) (p > 0.05), while there was a significant association between impaired social functioning and unemployment [14.0 vs. 11.2 (p = 0.037)]. Conclusion: The rates of experienced and anticipated discrimination faced by persons with mental disabilities in Kenya is high and with significant gender disparity. Although no strong associations were observed between experienced and anticipated discrimination and employment, impaired social functioning of persons with mental disabilities seems to have implications for employment. Further research is essential to understand the predictors of the discrimination and measures to reduce them in persons with psychosocial disabilities.

Project description:BackgroundHIV stigma has well-documented negative impacts on HIV testing, transmission risk behavior, initiation of and adherence to antiretroviral therapy, and retention in care. We sought to assess the extent to which anticipated HIV stigma is based on misperceptions of normative attitudes toward persons with HIV, and to determine whether persons with HIV have stronger misperceptions compared with HIV-negative persons or persons of unknown serostatus. We also sought to estimate the association between normative attitudes about persons with HIV and personal attitudes about persons with HIV, and to determine the extent to which anticipated stigma mediates this association.MethodsWe conducted a whole-population survey of 1776 persons living in 8 rural villages in southwestern Uganda. Negative attitudes toward persons with HIV, and anticipated stigma, were measured using a newly validated 15-item scale measuring multiple dimensions of HIV stigma, including social distance, blaming attitudes, and concerns about reciprocity. We used multivariable regression to estimate the association between normative attitudes about persons with HIV and personal attitudes toward persons with HIV, and to determine the extent to which perceptions of normative attitudes (anticipated stigma) mediated this association.ResultsStudy participants believed that negative attitudes toward persons with HIV were more pervasive than they actually are. Perceptions of the extent to which these negative attitudes are normative mediated more than one-third of the association between normative attitudes and their personal attitudes. In contrast to what we originally hypothesized, persons with HIV were less likely to misperceive these norms and perceived normative attitudes to be less stigmatizing than did others in the general population.ConclusionsInterventions designed to accurately describe normative attitudes toward persons with HIV may reduce HIV stigma without directly focusing on the educational components that are typically embedded in anti-stigma interventions.

Dataset Information

Persons with disabilities as experts-by experience: using personal narratives to affect community attitudes in Kilifi, Kenya.

Background

Methods

Results

Conclusion

Publications

Persons with disabilities as experts-by experience: using personal narratives to affect community attitudes in Kilifi, Kenya.

Similar Datasets

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