Lessons learned from the translation of the Internalised Stigma of Mental Illness (ISMI) scale into isiXhosa for use with South African Xhosa people with schizophrenia
- Authors: Matshabane, Olivia P , Appelbaum, Paul S , Faure, Marlyn C , Marshall, Patricia A , Stein, Dan J , de Vries, Jantina , Campbell, Megan M
- Date: 2023
- Subjects: To be catalogued
- Language: English
- Type: text , article
- Identifier: http://hdl.handle.net/10962/450689 , vital:74974 , xlink:href="https://doi.org/10.1177/13634615231168461"
- Description: Internalised stigma is highly prevalent among people with mental illness. This is concerning because internalised stigma is often associated with negative consequences affecting individuals’ personal, familial, social, and overall wellbeing, employment opportunities and recovery. Currently, there is no psychometrically validated instrument to measure internalised stigma among Xhosa people in their home language. Our study aimed to translate the Internalised Stigma of Mental Illness (ISMI) scale into isiXhosa. Following WHO guidelines, the ISMI scale was translated using a five-stage translation design which included (i) forward-translation, (ii) back-translation, (iii) committee approach, (iv) quantitative piloting, and (v) qualitative piloting using cognitive interviews. The ISMI isiXhosa version (ISMI-X) underwent psychometric testing to establish utility, within-scale validity, convergent, divergent, and content validity (assessed using frequency of endorsements and cognitive interviewing) with n = 65 Xhosa people with schizophrenia. The resultant ISMI-X scale demonstrated good psychometric utility, internal consistency for the overall scale (α = .90) and most subscales (α > .70, except the Stigma Resistance subscale where α = .57), convergent validity between the ISMI Discrimination Experiences subscale and the Discrimination and Stigma (DISC) scale's Treated Unfairly subscale (r = .34, p = .03) and divergent validity between the ISMI Stigma Resistance and DISC Treated Unfairly subscales (r = .13, p = .49). But more importantly the study provides valuable insights into strengths and limitations of the present translation design. Specifically, validation methods such as assessing frequency of endorsements of scale items and using cognitive interviewing to establish conceptual clarity and relevance of items may be useful in small piloting sample sizes.
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- Date Issued: 2023
Exploring how a genetic attribution to disease relates to stigma experiences of Xhosa patients with schizophrenia in South Africa
- Authors: Matshabane, Olivia P , Campbell, Megan M , Faure, Marlyn C , Marshall, Patricia A , Mayosi, Bongani M , Stein, Dan J , Appelbaum, Paul S , de Vries, Jantina
- Date: 2020
- Subjects: To be catalogued
- Language: English
- Type: text , article
- Identifier: http://hdl.handle.net/10962/302487 , vital:58201 , xlink:href="https://doi.org/10.1007/s00127-020-01875-z"
- Description: Background: Over the past three decades, a range of international stakeholders have highlighted the possibility that genomic research may impact stigma associated with psychiatric disorders. Limited research has been conducted in Africa to investigate this relation. Method In the present study, using focus group discussions, we explored the relation between genetic attribution and stigma among 36 Xhosa people with schizophrenia. We addressed three main questions: (1) What causal beliefs do Xhosa people with schizophrenia use to explain their illness and to what extent do genetic explanations play a role in these beliefs? (2) What are the internalised stigma experiences of Xhosa people with schizophrenia? (3) How do genetic explanations relate to stigma experiences, if at all? Results Most participants were able to define genetics and some linked genetics to disease causation. Despite adequate knowledge of genetics and an emphasis on genetic explanations of schizophrenia in the study, most participants held a multitude of causal explanations including: psychosocial, environmental, and cultural. Moreover, participants rarely mentioned disease cause when describing their stigma experiences. Discussion For this population group, there was no straight-forward relation between a genetic attribution and stigma. Therefore, we did not fnd evidence that genetic attribution may signifcantly increase stigma. Although North American and European literature provides conficting evidence regarding this relation, there is increased consensus that biomedical explanations for psychiatric disorders may reduce blame. This study found evidence supporting that consensus. This study provides an empirical foundation to inform ongoing work on the psychosocial implications of psychiatric genomics research in non-Western contexts.
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- Date Issued: 2020