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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

The complexities of trans women’s access to healthcare in South Africa: moving health systems beyond the gender binary towards gender equity

  • 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.
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  • 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

  • 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.
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  • Date Issued: 2023

Characterising the shared genetic influences between schizophrenia and subcortical brain regions

  • Authors: Wooton, Olivia , Campbell, Megan M , Jahanshad, Neda , Thompson, Paul , Stein, Dan J , Dalvie, Shareefa
  • Date: 2022
  • Subjects: To be catalogued
  • Language: English
  • Type: text , article
  • Identifier: http://hdl.handle.net/10962/302450 , vital:58197 , xlink:href="https://doi.org/10.1016/j.euroneuro.2022.07.533"
  • Description: Background: Abnormalities in brain structural volumes are well established in schizophrenia (SZ) and have been proposed as an endophenotype for the disorder. Despite increasing interest in the genetic relationship between brain structural volumes and SZ, our knowledge of the genetic overlap between the phenotypes is limited. This study aims to extend our current understanding of the shared genetic influences between SZ and subcortical brain volumes using data from the latest genome-wide association studies for the respective phenotypes (GWAS) and novel statistical approaches. Additionally, we will explore whether the association between schizophrenia and abnormal regional brain volumes is causal in nature. Methods: Summary statistics were obtained from the largest Psychiatric Genomic Consortium (PGC)-SZ GWAS (Ncase = 69,369, Ncontrol = 236,642) and the CHARGEENIGMA-UKBB GWAS of volumetric measures for eight subcortical brain regions (the nucleus accumbens, amygdala, brainstem, caudate nucleus, hippocampus, globus pallidus, putamen, and thalamus), and total intracranial volume (N = 30,983 - 40,380). Single nucleotide polymorphism (SNP) effect concordance analysis (SECA) was used to assess pleiotropy and concordance. Genetic correlation was assessed using linkage disequilibrium score regression (LDSR) and the pleiotropy informed conditional FDR approach was applied to identify SNPs associated with SZ conditional on their association with subcortical brain volumes. Mendelian randomization (MR) was used to test for causal association between SZ and each brain region. Results: There was evidence of global pleiotropy between SZ, and all examined subcortical brain regions. Inverse concordance between the genetic determinants of SZ and volumes of the nucleus accumbens, amygdala, brainstem, hippocampus, and thalamus was observed. Increased statistical power to detect SZ risk loci was shown when conditioning on subcortical brain volumes. There was no significant evidence for a causal effect of any of the examined brain regions on schizophrenia risk. Discussion: These data confirm the shared genetic basis of SZ and specific intracranial and subcortical brain volumes and provide evidence for negative concordance between SZ and volumes of the nucleus accumbens, amygdala, brainstem, hippocampus, and thalamus. Leveraging the genetic overlap between SZ and subcortical brain volumes has the potential to provide novel insights into the biological basis of the disorder.
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  • Date Issued: 2022

Measuring discrimination experienced by people with a mental illness

  • Authors: Brohan, Elaine , Thornicroft, Graham , Rüsch, Nicolas , Lasalvia, Antonio , Campbell, Megan M , Yalçınkaya-Alkar, Özden , Lanfredi, Mariangela , Ochoa, Susana , Üçok, Alp , Tomás, Catarina , Fadipe, Babatunde , Sebes, Julia , Fiorillo, Andrea , Sampogna, Gaia , Paula, Cristiane Silvestre , Valverde, Leonadis , Schomerus, Georg , Klemm, Pia , Ouali, Uta , Castelein, Stynke , Alexová, Aneta , Oexle, Nathalie , Guimarães, Patrícia Neves , Sportel, Bouwina Esther , Chang, Chih-Cheng , Li, Jie , Shanthi, Chilasagaram , Reneses, Blanca , Bakolis, Ioannis , Evans-Lacko, Sarah
  • Date: 2022
  • Subjects: To be catalogued
  • Language: English
  • Type: text , article
  • Identifier: http://hdl.handle.net/10962/302498 , vital:58202 , xlink:href="https://doi.org/10.1017/S0033291722000630"
  • Description: Background: The Discrimination and Stigma Scale (DISC) is a patient-reported outcome measure which assesses experiences of discrimination among persons with a mental illness globally. Methods: This study evaluated whether the psychometric properties of a short-form version, DISC-Ultra Short (DISCUS) (11-item), could be replicated in a sample of people with a wide range of mental disorders from 21 sites in 15 countries/territories, across six global regions. The frequency of experienced discrimination was reported. Scaling assumptions (confirmatory factor analysis, inter-item and item-total correlations), reliability (internal consistency) and validity (convergent validity, known groups method) were investigated in each region, and by diagnosis group. Results: 1195 people participated. The most frequently reported experiences of discrimination were being shunned or avoided at work (48.7%) and discrimination in making or keeping friends (47.2%). Confirmatory factor analysis supported a unidimensional model across all six regions and five diagnosis groups. Convergent validity was confirmed in the total sample and within all regions [ Internalised Stigma of Mental Illness (ISMI-10): 0.28–0.67, stopping self: 0.54–0.72, stigma consciousness: −0.32–0.57], as was internal consistency reliability (α = 0.74–0.84). Known groups validity was established in the global sample with levels of experienced discrimination significantly higher for those experiencing higher depression [Patient Health Questionnaire (PHQ)-2: p more than 0.001], lower mental wellbeing [Warwick-Edinburgh Well-being Scale (WEMWBS): p is less than 0.001], higher suicidal ideation [Beck Hopelessness Scale (BHS)-4: p is less than 0.001] and higher risk of suicidal behaviour [Suicidal Ideation Attributes Scale (SIDAS): p is less than 0.001]. Conclusions: The DISCUS is a reliable and valid unidimensional measure of experienced discrimination for use in global settings with similar properties to the longer DISC. It offers a brief assessment of experienced discrimination for use in clinical and research settings.
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  • Date Issued: 2022

The genetic architecture of the corpus callosum and its subregions

  • Authors: Campbell, Megan M , Dalvie, Shareefa , Shadrin, Alexey , Van der Meer, Dennis , Andreassen, Ola , Stein, Dan J , Rokicki, Jaroslav
  • Date: 2022
  • Subjects: To be catalogued
  • Language: English
  • Type: text , article
  • Identifier: http://hdl.handle.net/10962/302542 , vital:58206 , xlink:href="https://doi.org/10.1016/j.euroneuro.2022.07.263"
  • Description: Background: Regional surface area and thickness of the cerebral cortex and volume of subcortical structures are highly heritable brain morphological features with complex genetic architectures, involving many common genetic variants with small effect sizes. However, the genetic architecture of the corpus callosum (CC) and its subregions remains largely unclear. We aim to determine the heritability and genetic architecture of CC volume and each subregion and the extent to which this overlaps with that of psychiatric disorders. Methods: Genetic and T1-weighted MRI data of 40,894 individuals from the UK-biobank was used to construct a multivariate GWAS. Here, we utilized a multivariate approach (Multivariate Omnibus Statistical Test, MOSTest) to assess the distributive effects of common variants across the five subregions of the CC (posterior, mid posterior, central, mid anterior and anterior) obtained by running the automatic subcortical segmentation algorithm in FreeSurfer 5.3. Gene-set enrichment analyses were performed using MAGMA. Linkage disequilibrium score regression was used to determine the SNP-based heritability of the CC and will be used to assess the genetic correlation between each subregion and a variety of psychiatric disorders. Results: Following MOSTest, 70 independent loci show pooled effects across the 5 subregions of the CC (p more than 5×10-8). Using LDSC, we found evidence to suggest that CC volume is heritable (h2SNP= 0.38, SE=0.03). Significant variants showed enrichment in pathways related to regulation of the nervous system and cell development, neurogenesis, and regulation of neuron differentiation. Gene-set analysis revealed 156 significant genes (p is less than 2.6x10-6). Many of the significant SNPs have been previously associated with white matter hyperintensity volume as well as a range of psychiatric disorders. Discussion: Here we provide the first preliminary evidence to suggest that volume of the CC is heritable. Gene set enrichment analyses identified pathways related to neuron development and neurogenesis, suggesting that CC alteration may have an independent developmental origin. Further investigation into the shared genetic architecture of CC subregions and psychiatric disorders may provide novel insight into disease manifestation.
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  • Date Issued: 2022

Validity of categories related to gender identity in ICD-11 and DSM-5 among transgender individuals who seek gender-affirming medical procedures

  • Authors: Robles, Rebeca , Keeley, Jared W , Vega-Ramírez, H , Cruz-Islas, Jeremy , Rodríguez-Pérez, Victor , Sharan, Pratap , Purnima, Shivani , Rao, Ravindra , Rodrigues-Lobato, María I , Soll, Bianca , Askevis-Leherpeux, Françoise , Roelandt, Jean-Luc , Campbell, Megan M , Grobler, Gerhard , Stein, Dan H , Khoury, Brigitte , El Khoury, Joseph , Fresán, Ana , Medina-Mora, María , Reed, Geoffrey M
  • Date: 2022
  • Subjects: To be catalogued
  • Language: English
  • Type: text , article
  • Identifier: http://hdl.handle.net/10962/302589 , vital:58210 , xlink:href="https://doi.org/10.1016/j.ijchp.2021.100281"
  • Description: Background/Objective: The most recent versions of the two main mental disorders classifications—the World Health Organization's ICD-11 and the American Psychiatric Association's DSM–5—differ substantially in their diagnostic categories related to transgender identity. ICD-11 gender incongruence (GI), in contrast to DSM-5 gender dysphoria (GD), is explicitly not a mental disorder; neither distress nor dysfunction is a required feature. The objective was compared ICD-11 and DSM-5 diagnostic requirements in terms of their sensitivity, specificity, discriminability and ability to predict the use of gender-affirming medical procedures. Method: A total of 649 of transgender adults in six countries completed a retrospective structured interview. Results: Using ROC analysis, sensitivity of the diagnostic requirements was equivalent for both systems, but ICD-11 showed greater specificity than DSM-5. Regression analyses indicated that history of hormones and/or surgery was predicted by variables that are an intrinsic aspect of GI/GD more than by distress and dysfunction. IRT analyses showed that the ICD-11 diagnostic formulation was more parsimonious and contained more information about caseness than the DSM-5 model. Conclusions: This study supports the ICD-11 position that GI/GD is not a mental disorder; additional diagnostic requirements of distress and/or dysfunction in DSM-5 reduce the predictive power of the diagnostic model.
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  • Date Issued: 2022

Adaptation and validation of a computerized neurocognitive battery in the Xhosa of South Africa

  • Authors: Cobb, Scott J , Moore, Tyler M , Stein, Dan J , Pretorius, Adele , Zingela, Zukiswa , Nagdee, Mohammed , Ngqengelele, Linda , Campbell, Megan M , Sibeko, Goodman , King, Mary C , McClellan, Jon M , Port, Allison M , Jackson, Chad , Ruparel, Kosha , Susser, Ezra , Gur, Ruben C
  • Date: 2021
  • Subjects: To be catalogued
  • Language: English
  • Type: text , article
  • Identifier: http://hdl.handle.net/10962/302439 , vital:58196 , xlink:href="https://doi.org/10.1037/neu0000742"
  • Description: Objective: Large-scale studies have revolutionized biomedical research, and neurocognitive tests can help elucidate the biological basis of neuropsychiatric diseases. However, studies have predominantly been conducted in Western settings. We describe the development and validation of a computerized battery (PennCNB) with the Xhosa population of South Africa. Method: Individuals with schizophrenia (n = 525) and a normative comparison group (n = 744) were balanced on age, sex, education, and region. Participants provided blood samples, were assessed psychiatrically, and were administered a PennCNB translation to isiXhosa, including measures of executive functions, episodic memory, complex cognition, social cognition, and sensorimotor speed. Feasibility was examined with test completion rates and input from administrators, and psychometric structural validity and associations with clinical and demographic characteristics were examined. Results: Tests were well tolerated by participants, as >87% had one (or fewer) test missing. Results suggested a similar factor structure to prior PennCNB studies in Western contexts, and expected age and sex effects were apparent. Furthermore, a similar profile of schizophrenia was observed, with neurocognitive deficits most pronounced for executive functions, especially attention, as well as memory, social cognition, and motor speed relative to complex cognition and sensorimotor speed. Conclusions: Results support the feasibility of implementing a culturally adapted computerized neurocognitive battery in sub-Saharan African settings and provide evidence supporting the concurrent validity of the translated instrument. Thus, the PennCNB is implementable on a large scale in non-Western contexts, shows expected factor structure, and can detect cognitive deficits associated with neuropsychiatric disorders. Obtaining valid measures of cognition by nonspecialized proctors is especially suitable in resource-limited settings, where traditional testing is prohibitive. Future work should establish normative standards, test–retest reliability, and sensitivity to treatment.
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  • Date Issued: 2021

Evaluating Community Engagement Strategies to Manage Stigma in Two African Genomics Studies Involving People Living with Schizophrenia or Rheumatic Heart Disease

  • Authors: Campbell, Megan M , Matshabane, Olivia P , Mqulwana, Sibonile , Mndini, Michael , Nagdee, Mohammed , Stein, Dan J , de Vries, Jantina
  • Date: 2021
  • Subjects: To be catalogued
  • Language: English
  • Type: text , article
  • Identifier: http://hdl.handle.net/10962/302475 , vital:58199 , xlink:href="https://doi.org/10.1155/2021/9926495"
  • Description: In global health research and genomics research specifically, community engagement has gained prominence in enhancing ethical conduct, particularly in managing the risk of stigmatization, but there is minimal scientific evidence on how to do this effectively. This article reports on community engagement evaluation strategies in two African genomics studies: the Stigma in African Genomics Research study and the Genomics of Schizophrenia in South African Xhosa People (SAX) study. Within the Stigma in African Genomics Research study, a self-report rating scale and open-ended questions were used to track participant responses to an experiential theatre workshop. The workshop focused on participant experiences of living with schizophrenia or rheumatic heart disease (RHD). While the schizophrenia group reported more alienation and less stigma resistance than the RHD group, both groups demonstrated increased stigma resistance over time, after participating in the workshops. Hearing from others living with and managing the same illness normalised participants’ own experiences and encouraged them. Within the SAX study, a short rating scale and qualitative feedback methods were used to evaluate a Mental Health Literacy Day targeting mental health stigma. Information talks about (i) the symptoms of schizophrenia and treatment options and (ii) the illness experiences of a patient in recovery were rated as the most helpful on the day. Audience members reported that these talks challenged negative perceptions about severe mental illness. Three important learnings emerged from these evaluations: firstly, integration of evaluation strategies at the research study planning phase is likely to promote more effective community engagement. Secondly, a combination of quantitative and qualitative methods that draw on simple descriptive statistics and thematic analysis can provide nuanced perspectives about the value of community engagement. Thirdly, such evidence is necessary in establishing and promoting the science of community engagement in genomics research and health research more broadly.
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  • Date Issued: 2021

Neuropsychiatric Genetics of African Populations-Psychosis (NeuroGAPPsychosis): a case-control study protocol and GWAS in Ethiopia, Kenya, South Africa and Uganda

Prevalence and clinical correlates of substance use disorders in South African Xhosa patients with schizophrenia

  • Authors: Temmingh, Henk , Susser, Ezra , Mall, Sumaya , Campbell, Megan M , Sibeko, Goodman , Stein, Dan J
  • Date: 2021
  • Subjects: To be catalogued
  • Language: English
  • Type: text , article
  • Identifier: http://hdl.handle.net/10962/302509 , vital:58203 , xlink:href="https://doi.org/10.1007/s00127-020-01942-5"
  • Description: Purpose: To determine the prevalence of substance use disorders (SUDs) in patients with schizophrenia in a sample from South Africa and compare the clinical and demographic correlates in those with and without co-occurring SUDs. Methods: Patients with schizophrenia were interviewed using the Xhosa version SCID-I for DSM-IV. We used logistic regression to determine the predictors of SUDs. Results: In the total sample of 1420 participants, SUDs occurred in 47.8%, with the most prevalent SUD being cannabis use disorders (39.6%), followed by alcohol (20.5%), methaqualone (6.2%), methamphetamine (4.8%) and other SUDs (cocaine, ecstasy, opioids, 0.6%). Polydrug use occurred in 40%, abuse occurred in 13.5%, and 39.6% had at least one substance dependence diagnosis. Signifcant predictors of any SUD were younger age (41–55 vs. 21–30: OR=0.7, 95% CI=0.5–0.9), male sex (OR=8.6, 95% CI=5.1–14.6), inpatient status (OR=1.7, 95% CI=1.3–2.1), post-traumatic stress symptoms (OR=4.6, 95% CI=1.6–13.3), legal (OR=3.4, 95% CI=2.0–5.5) and economic problems (OR=1.4, 95% CI=1.0–2.0). Methamphetamine use disorders occurred signifcantly less often in the Eastern compared to the Western Cape provinces. Inpatient status and higher levels of prior admissions were signifcantly associated with cannabis and methamphetamine use disorders. Post-traumatic stress symptoms were signifcantly associated with alcohol use disorders. Anxiety disorders were associated with other SUDs. Conclusion: SUDs occurred in almost half of the sample. It is important for clinicians to identify the presence of SUDs as their presence is associated with characteristics, such as male sex, younger age, inpatient status, more prior hospitalisations, legal and economic problems, PTSD symptoms and anxiety.
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  • Date Issued: 2021

The hermeneutics of recovery

  • Authors: Kong, Camillia , Campbell, Megan M , Kpobi, Lily , Swartz, Leslie , Atuire, Caesar
  • Date: 2021
  • Subjects: To be catalogued
  • Language: English
  • Type: text , article
  • Identifier: http://hdl.handle.net/10962/302554 , vital:58207 , xlink:href="https://doi.org/10.1177/13634615211000549"
  • Description: The widespread use of faith-based and traditional healing for mental disorders within African contexts is well known. However, normative responses tend to fall within two camps: on one hand, those oriented towards the biomedical model of psychiatry stress the abuses and superstition of such healing, whilst critics adopting a more ‘local’ perspective have fundamentally challenged the universalist claims of biomedical diagnostic categories and psychiatric treatments. What seemingly emerges is a dichotomy between those who endorse more ‘universalist’ or ‘relativist’ approaches as an analytical lens to the challenges of the diverse healing strands within African contexts. In this article, we draw upon the resources of philosophy and existing empirical work to challenge the notion that constructive dialogue cannot be had between seemingly incommensurable healing practices in global mental health. First, we suggest the need for much-needed conceptual clarity to explore the hermeneutics of meaning, practice, and understanding, in order to forge constructive normative pathways of dialogue between seemingly incommensurable values and conceptual schemas around mental disorder and healing. Second, we contextualise the complex motives to emphasise difference amongst health practitioners within a competitive healing economy. Finally, we appeal to the notion of recovery as discovery as a fruitful conceptual framework which incorporates dialogue, comparative evaluation, and cross-cultural enrichment across divergent conceptualisations of mental health.
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  • Date Issued: 2021

The role of causal knowledge in stigma considerations in African genomics research

  • Authors: Matshabane, Olivia P , Campbell, Megan M , Appelbaum, Paul S , Marshall, Patricia A , Stein, Dan J , de Vries, Jantina
  • Date: 2021
  • Subjects: To be catalogued
  • Language: English
  • Type: text , article
  • Identifier: http://hdl.handle.net/10962/302578 , vital:58209 , xlink:href="https://doi.org/10.1016/j.socscimed.2021.113902"
  • Description: Introduction: Advances in genomics research have raised several ethical concerns. One concern is the potential impact of genomics research on stigma experienced by people affected by a disease. Studies have found that the type of illness as well as disease causal beliefs impact on the relation between genetic attribution and stigma. This study explored the potential impact of genetic attribution of disease on stigma among Xhosa people with Rheumatic Heart Disease (RHD). Methods: Study participants were 46 Xhosa people with RHD living in the Western Cape Province of South Africa. Using video vignettes in 7 focus group discussions we explored whether and how genetic attribution may impact on disease-stigma. Vignettes introduced participants to non-genetic and genetic causal explanations and were followed-up with a series of open-ended questions eliciting their perceptions of non-genetic disease causes as well as genetic causation and its impact on internalised stigma. Results: This study found that Xhosa people with RHD have a general understanding of genetics and genetic attribution for disease. Additionally, and not withstanding their genetic knowledge, these participants hold multiple disease causal beliefs including genetic, infectious disease, psychosocial, behavioural and cultural explanations. While there was evidence of internalised stigma experiences among participants, these appeared not to be related to a genetic attribution to the disease. Discussion: The findings of this study provide clues as to why it is unlikely that a genetic conceptualisation of disease impacts internalised stigma experiences of Xhosa people. The causal explanations provided by participants reflect their cultural understandings and their context, namely, living in low-income and poverty-stricken environments. Divergence in these findings from much of the evidence from high-income countries emphasises that context matters when considering the impact of genetic attribution on stigma and caution against generalising findings from one part of the globe to another.
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  • Date Issued: 2021

Education versus screening

  • Authors: Kong, Camillia , Efrem, Mehret , Campbell, Megan M
  • Date: 2020
  • Subjects: To be catalogued
  • Language: English
  • Type: text , article
  • Identifier: http://hdl.handle.net/10962/302461 , vital:58198 , xlink:href="http:// 10.1136/medethics-2019-105396"
  • Description: Informed consent procedures for participation in psychiatric genomics research among individuals with mental disorder and intellectual disability can often be unclear, particularly because the underlying ethos guiding consent tools reflects a core ethical tension between safeguarding and inclusion. This tension reflects important debates around the function of consent tools, as well as the contested legitimacy of decision-making capacity thresholds to screen potentially vulnerable participants. Drawing on human rights, person-centred psychiatry and supported decisionmaking, this paper problematises the use of consent procedures as screening tools in psychiatric genomics studies, particularly as increasing normative emphasis has shifted towards the empowerment and participation of those with mental disorder and intellectual disabilities. We expound on core aspects of supported decisionmaking, such as relational autonomy and hermeneutic competence, to orient consent procedures towards a more educative, participatory framework that is better aligned with developments in disability studies. The paper concludes with an acknowledgement of the pragmatic and substantive challenges in adopting this framework in psychiatric genomics studies if this participatory ethos towards persons with mental disorder and intellectual disability is to be fully realised.
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  • Date Issued: 2020

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

Prioritising African perspectives in psychiatric genomics research

  • Authors: Kamaara, Eunice , Kong, Camillia , Campbell, Megan M
  • Date: 2020
  • Subjects: To be catalogued
  • Language: English
  • Type: text , article
  • Identifier: http://hdl.handle.net/10962/302520 , vital:58204 , xlink:href="https://doi.org/10.1111/dewb.12248"
  • Description: Psychiatric genomics research with African populations comes with a range of practical challenges around translation of psychiatric genomics research concepts, procedures, and nosology. These challenges raise deep ethical issues particularly around legitimacy of informed consent, a core foundation of research ethics. Through aconsideration of the constitutive function of language, the paper problematises like‐for‐like, designative translations which often involve the ‘indigenization’ of English terms or use of metaphors which misrepresent the risks and benefits of research. This paper argues that effective translation of psychiatric genomics research terminology in African contexts demands substantive engagement with African conceptual schemas and values. In developing attenuated forms of translational thinking, researchers may recognise the deeper motivational reasons behind participation in research, highlighting the possibility that such reasons may depart from the original meaning implied within informed consent forms. These translational issues might be ameliorated with a critical re-examination of how researchers develop and present protocols to institutional ethics review boards.
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  • Date Issued: 2020

The relationship between childhood trauma and schizophrenia in the Genomics of Schizophrenia in the Xhosa people (SAX) study in South Africa

  • Authors: Mall, Sumaya , Platt, Jonathan M , Temmingh, Henk , Musenge, Eustasius , Campbell, Megan M , Susser, Ezra , Stein, Dan J
  • Date: 2020
  • Subjects: To be catalogued
  • Language: English
  • Type: text , article
  • Identifier: http://hdl.handle.net/10962/302567 , vital:58208 , xlink:href="https://doi.org/10.1017/S0033291719001703"
  • Description: Background. Evidence from high-income countries suggests that childhood trauma is associated with schizophrenia. Studies of childhood trauma and schizophrenia in low and middle income (LMIC) countries are limited. This study examined the prevalence of childhood traumatic experiences among cases and controls and the relationship between specific and cumulative childhood traumatic experiences and schizophrenia in a sample in South Africa. Methods. Data were from the Genomics of Schizophrenia in the South African Xhosa people study. Cases with schizophrenia and matched controls were recruited from provincial hospitals and clinics in the Western and Eastern Cape regions in South Africa. Childhood traumatic experiences were measured using the Childhood Trauma Questionnaire (CTQ). Adjusted logistic regression models estimated associations between individual and cumulative childhood traumatic experiences and schizophrenia. Results. Traumatic experiences were more prevalent among cases than controls. The odds of schizophrenia were 2.44 times higher among those who experienced any trauma than those who reported no traumatic experiences (95% CI 1.77–3.37). The odds of schizophrenia were elevated among those who experienced physical/emotional abuse (OR 1.59, CI 1.28–1.97), neglect (OR 1.39, CI 1.16–1.68), and sexual abuse (OR 1.22, CI 1.03–1.45) compared to those who did not. Cumulative physical/emotional abuse and neglect experiences increased the odds of schizophrenia as a dose–response relationship. Conclusion. Childhood trauma is common in this population. Among many other benefits, interventions to prevent childhood trauma may contribute to a decreasing occurrence of schizophrenia.
  • Full Text:
  • Date Issued: 2020

Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study

Using iterative learning to improve understanding during the informed consent process in a South African psychiatric genomics study

  • 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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