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
- Matshabane, Olivia P, Appelbaum, Paul S, Faure, Marlyn C, Marshall, Patricia A, Stein, Dan J, de Vries, Jantina, Campbell, Megan M
- 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.
- Full Text:
- Date Issued: 2023
- 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.
- Full Text:
- Date Issued: 2023
The complexities of trans women’s access to healthcare in South Africa: moving health systems beyond the gender binary towards gender equity
- Shabalala, Siyanda B, Campbell, Megan M
- Authors: Shabalala, Siyanda B , Campbell, Megan M
- Date: 2023
- Subjects: To be catalogued
- Language: English
- Type: text , article
- Identifier: http://hdl.handle.net/10962/450741 , vital:74978 , xlink:href="https://doi.org/10.1186/s12939-023-02039-6"
- Description: Public health research highlights the influence of socio-political biases shaping obstacles to fair healthcare access based on gender. South Africa has shown commitment to resolving gender imbalances in healthcare, historically emphasizing cisgender women’s challenges. However, research gaps exist in exploring how public health systems perpetuate disparities among gender-diverse persons, like trans women, who face exclusion due to their deviation from cisgender norms in healthcare. Critical, intersectionality-informed health research carries the potential to reveal the diversity of gendered healthcare experiences and expose the systems and processes that marginalize trans patients.
- Full Text:
- Date Issued: 2023
- Authors: Shabalala, Siyanda B , Campbell, Megan M
- Date: 2023
- Subjects: To be catalogued
- Language: English
- Type: text , article
- Identifier: http://hdl.handle.net/10962/450741 , vital:74978 , xlink:href="https://doi.org/10.1186/s12939-023-02039-6"
- Description: Public health research highlights the influence of socio-political biases shaping obstacles to fair healthcare access based on gender. South Africa has shown commitment to resolving gender imbalances in healthcare, historically emphasizing cisgender women’s challenges. However, research gaps exist in exploring how public health systems perpetuate disparities among gender-diverse persons, like trans women, who face exclusion due to their deviation from cisgender norms in healthcare. Critical, intersectionality-informed health research carries the potential to reveal the diversity of gendered healthcare experiences and expose the systems and processes that marginalize trans patients.
- Full Text:
- Date Issued: 2023
The use of a Subjective wellbeing scale as predictor of adherence to neuroleptic treatment to determine poor prognostic factor in African population with Schizophrenia
- Boshe, J J, Stein, Dan J, Campbell, Megan M
- Authors: Boshe, J J , Stein, Dan J , Campbell, Megan M
- Date: 2023
- Subjects: To be catalogued
- Language: English
- Type: text , article
- Identifier: http://hdl.handle.net/10962/450766 , vital:74980 , xlink:href="10.1192/j.eurpsy.2023.384"
- Description: Objectives: To investigate and identify demographic and clinical predic-tors of subjective well-being in a sample of Xhosa people with schizo-phrenia on neuroleptic treatment. Methods: As a part of a large genetic study, 244 study participants with a confirmed diagnosis of schizophre-nia completed the translated SWN-K 20 scale. Internal consistency analysis was performed, and convergent analysis and exploratory analysis were conducted using Principal Component Analysis (PCA). Linear regression methods were used to determine predictors of SWBN in the sample population.
- Full Text:
- Date Issued: 2023
- Authors: Boshe, J J , Stein, Dan J , Campbell, Megan M
- Date: 2023
- Subjects: To be catalogued
- Language: English
- Type: text , article
- Identifier: http://hdl.handle.net/10962/450766 , vital:74980 , xlink:href="10.1192/j.eurpsy.2023.384"
- Description: Objectives: To investigate and identify demographic and clinical predic-tors of subjective well-being in a sample of Xhosa people with schizo-phrenia on neuroleptic treatment. Methods: As a part of a large genetic study, 244 study participants with a confirmed diagnosis of schizophre-nia completed the translated SWN-K 20 scale. Internal consistency analysis was performed, and convergent analysis and exploratory analysis were conducted using Principal Component Analysis (PCA). Linear regression methods were used to determine predictors of SWBN in the sample population.
- Full Text:
- Date Issued: 2023
Using iterative learning to improve understanding during the informed consent process in a South African psychiatric genomics study
- Campbell, Megan M, Susser, Ezra, Mall, Sumaya, Mqulwana, Sibonile G, Mndini, Michael M, Ntola, Odwa A, Nagdee, Mohamed, Zingela, Zukiswa, Van Wyk, Stephanus, Stein, Dan J
- Authors: Campbell, Megan M , Susser, Ezra , Mall, Sumaya , Mqulwana, Sibonile G , Mndini, Michael M , Ntola, Odwa A , Nagdee, Mohamed , Zingela, Zukiswa , Van Wyk, Stephanus , Stein, Dan J
- Date: 2017
- Subjects: Informed consent (Medical law) , Patient education
- Language: English
- Type: text , article
- Identifier: http://hdl.handle.net/11260/6114 , vital:45124 , https://doi.org/10.1371/journal.pone.0188466
- Description: Obtaining informed consent is a great challenge in global health research. There is a need for tools that can screen for and improve potential research participants’ understanding of the research study at the time of recruitment. Limited empirical research has been conducted in low and middle income countries, evaluating informed consent processes in genomics research. We sought to investigate the quality of informed consent obtained in a South African psychiatric genomics study. A Xhosa language version of the University of California, San Diego Brief Assessment of Capacity to Consent Questionnaire (UBACC) was used to screen for capacity to consent and improve understanding through iterative learning in a sample of 528 Xhosa people with schizophrenia and 528 controls. We address two questions: firstly, whether research participants’ understanding of the research study improved through iterative learning; and secondly, what were predictors for better understanding of the research study at the initial screening? During screening 290 (55%) cases and 172 (33%) controls scored below the 14.5 cut-off for acceptable understanding of the research study elements, however after iterative learning only 38 (7%) cases and 13 (2.5%) controls continued to score below this cut-off. Significant variables associated with increased understanding of the consent included the psychiatric nurse recruiter conducting the consent screening, higher participant level of education, and being a control. The UBACC proved an effective tool to improve understanding of research study elements during consent, for both cases and controls. The tool holds utility for complex studies such as those involving genomics, where iterative learning can be used to make significant improvements in understanding of research study elements. The UBACC may be particularly important in groups with severe mental illness and lower education levels. Study recruiters play a significant role in managing the quality of the informed consent process.
- Full Text:
- Date Issued: 2017
- Authors: Campbell, Megan M , Susser, Ezra , Mall, Sumaya , Mqulwana, Sibonile G , Mndini, Michael M , Ntola, Odwa A , Nagdee, Mohamed , Zingela, Zukiswa , Van Wyk, Stephanus , Stein, Dan J
- Date: 2017
- Subjects: Informed consent (Medical law) , Patient education
- Language: English
- Type: text , article
- Identifier: http://hdl.handle.net/11260/6114 , vital:45124 , https://doi.org/10.1371/journal.pone.0188466
- Description: Obtaining informed consent is a great challenge in global health research. There is a need for tools that can screen for and improve potential research participants’ understanding of the research study at the time of recruitment. Limited empirical research has been conducted in low and middle income countries, evaluating informed consent processes in genomics research. We sought to investigate the quality of informed consent obtained in a South African psychiatric genomics study. A Xhosa language version of the University of California, San Diego Brief Assessment of Capacity to Consent Questionnaire (UBACC) was used to screen for capacity to consent and improve understanding through iterative learning in a sample of 528 Xhosa people with schizophrenia and 528 controls. We address two questions: firstly, whether research participants’ understanding of the research study improved through iterative learning; and secondly, what were predictors for better understanding of the research study at the initial screening? During screening 290 (55%) cases and 172 (33%) controls scored below the 14.5 cut-off for acceptable understanding of the research study elements, however after iterative learning only 38 (7%) cases and 13 (2.5%) controls continued to score below this cut-off. Significant variables associated with increased understanding of the consent included the psychiatric nurse recruiter conducting the consent screening, higher participant level of education, and being a control. The UBACC proved an effective tool to improve understanding of research study elements during consent, for both cases and controls. The tool holds utility for complex studies such as those involving genomics, where iterative learning can be used to make significant improvements in understanding of research study elements. The UBACC may be particularly important in groups with severe mental illness and lower education levels. Study recruiters play a significant role in managing the quality of the informed consent process.
- Full Text:
- Date Issued: 2017
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