Browsing by Author "Campbell, Megan"

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    Open Access
    Community engagement strategies for genomic studies in Africa: a review of the literature
    (2015-04-12) Tindana, Paulina; de Vries, Jantina; Campbell, Megan; Littler, Katherine; Seeley, Janet; Marshall, Patricia; Troyer, Jennifer; Ogundipe, Morisola; Alibu, Vincent P; Yakubu, Aminu; Parker, Michael
    Background: Community engagement has been recognised as an important aspect of the ethical conduct of biomedical research, especially when research is focused on ethnically or culturally distinct populations. While this is a generally accepted tenet of biomedical research, it is unclear what components are necessary for effective community engagement, particularly in the context of genomic research in Africa. Methods: We conducted a review of the published literature to identify the community engagement strategies that can support the successful implementation of genomic studies in Africa. Our search strategy involved using online databases, Pubmed (National Library of Medicine), Medline and Google scholar. Search terms included a combination of the following: community engagement, community advisory boards, community consultation, community participation, effectiveness, genetic and genomic research, Africa, developing countries. Results: A total of 44 articles and 1 thesis were retrieved of which 38 met the selection criteria. Of these, 21 were primary studies on community engagement, while the rest were secondary reports on community engagement efforts in biomedical research studies. 34 related to biomedical research generally, while 4 were specific to genetic and genomic research in Africa. Conclusion: We concluded that there were several community engagement strategies that could support genomic studies in Africa. While many of the strategies could support the early stages of a research project such as the recruitment of research participants, further research is needed to identify effective strategies to engage research participants and their communities beyond the participant recruitment stage. Research is also needed to address how the views of local communities should be incorporated into future uses of human biological samples. Finally, studies evaluating the impact of CE on genetic research are lacking. Systematic evaluation of CE strategies is essential to determine the most effective models of CE for genetic and genomic research conducted in African settings.
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    Ethical challenges in global health-related stigma research
    (2019-04-29) Millum, Joseph; Campbell, Megan; Luna, Florencia; Malekzadeh, Arianne; Karim, Quarraisha A
    Background It is critically important to conduct research on stigmatized conditions, to include marginalized groups that experience stigma, and to develop interventions to reduce stigma. However, such research is ethically challenging. Though superficial reference is frequently made to these widely acknowledged challenges, few publications have focused on ethical issues in research on stigmatized groups or conditions. In fact, a brief literature review found only two such publications. Main text At a recent Science of Stigma Reduction workshop comprising 60 stigma researchers from the USA and low and middle-income countries, the need for more robust and critical discussion of the ethics of the research was highlighted. In this paper we describe, illustrate through cases, and critically examine key ethical challenges that are more likely to arise because a research study focuses on health-related stigma or involves stigmatized groups or conditions. We examine the ethics of this research from two perspectives. First, through the lens of overprotection, where we discuss how the perception of stigma can impede ethical research, disrespect research participants, and narrow the research questions. Second, through the lens of research risks, where we consider how research with stigmatized populations can unintentionally result in harms. Research-related harms to participants include potential breaches of confidentiality and the exacerbation of stigma. Potential harms also extend to third parties, including families and populations who may be affected by the dissemination of research results. Conclusions Research with stigmatized populations and on stigmatized conditions should not be impeded by unnecessary or inappropriate protective measures. Nevertheless, it may entail different and greater risks than other health research. Investigators and research ethics committees must be particularly attentive to these risks and how to manage them.
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    Exploring how a genetic attribution to disease relates to internalised stigma experiences of Xhosa people with schizophrenia and rheumatic heart disease in South Africa
    (2019) Matshabane, Olivia Precious; De Vries, Jantina; Campbell, Megan
    Advances in genomics research have brought forth a number of psychosocial concerns. In Africa, in particular, one of the concerns relates to the potential impact of genomics research on stigma experienced by specific population groups. Using a mixed-methods approach, this study sought to explore how genetic causal explanation relates to the internalised stigma experiences of a sample of South African Xhosa people with schizophrenia (n= 36) and rheumatic heart disease (n= 46). Additionally, a pilot study was conducted with another sample of schizophrenia (n= 65) and rheumatic heart disease (n= 55) patients to translate and adapt an internalised stigma of mental illness scale into isiXhosa. The aim of the study was operationalised into three research questions, namely; 1. What causal attribution models do Xhosa people with schizophrenia and rheumatic heart disease employ to explain their illness and to what extent do genetic explanations play a role in these causal models? 2. What are the internalised stigma experiences of Xhosa people with schizophrenia and rheumatic heart disease? 3. How do the genetic causal explanations of Xhosa people with schizophrenia and rheumatic heart relate to their internalised stigma experiences, if at all? Through focus-group discussions participants were introduced to non-genetic and genetic causal explanations and then asked a series of open-ended questions eliciting their perceptions of disease causation, genetic causation and the possible implications these perceptions may have on internalised stigma they may have experienced. Next, an internalised stigma of mental illness scale (ISMI) was translated through a mixed-methods translation approach into Xhosa and adapted for use in both disease groups. Insights from this translation were used to gain an understanding of how the Xhosa language supports particular descriptions and conceptualisations of stigma experiences. Psychometric results provided further insights into particularly relevant internalised stigma items for each disease group. Findings from the FGDs and translation process suggested that firstly Xhosa people with schizophrenia and those with rheumatic heart disease have a general understanding of genetics and genetic attribution to disease. Secondly, and not withstanding this knowledge, these participants hold a multitude of disease explanations. In consideration of the alternative causal explanations, and the factors these participants are exposed to, the genetic explanation did not appear to relate to their internalised stigma. While there was evidence of stigma in the two disease groups - schizophrenia patients reporting more stigma than the rheumatic heart disease sample - this stigma was not often related to a genetic attribution of disease. Findings suggest that the link between genetic attribution and stigma is complex. Due to the variable nature of the evidence derived from the study we cannot conclude that a genetic attribution is not related to stigma, however the findings provide clues as to why this is an unlikely implication for Xhosa people in these disease groups. This finding is different to empirical research which has been conducted in North American and European contexts. Although research in Western and European contexts suggests that attributing a disease to genetics may have an impact on disease-stigma, there have been minimal efforts to explore that assumption in the African context. This study, being one of the first to explore that assumption in an African population group, did not find consistent evidence to support it.
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    Investigation of the Shared Genetic Influences on Bipolar Disorder, Borderline Personality Disorder and Regional Brain Structures
    (2021) Campbell, Megan; Dalvie, Shareefa; Stein, Dan; Ramesar, Raj; Rockiki, Jaroslav
    Background: The heritabilities of bipolar disorder (BD) and borderline personality disorder (BPD) are 80% and 65%, respectively, indicating substantial genetic contributions to both disorders. BD and BPD are often comorbid, and both disorders have a polygenic architecture. These variants are thought to subtly affect multiple pathways, associated with structural brain abnormalities commonly observed in patients with BD and BPD. Brain regions have been shown to be highly heritable and under distinct genetic influences. However, the overlap in genetic risk between BD and BPD and altered brain regions, respectively, has not yet been determined. Aims and Objectives: The aim of this project was to determine whether genetic risk for BD and BPD overlaps with genetic risk for altered brain regions. Methods: Genome-wide association study (GWAS) summary statistics for BD (Ncases=20,352; Ncontrols= 31,358), BPD (Ncase=998; Ncontrol=1,545), eight subcortical brain volumes (nucleus accumbens, amygdala, caudate nucleus, hippocampus, pallidum, putamen and thalamus) and intracranial volume (ICV) (N=27,087), and cortical surface area and thickness (N=37,479) were obtained. Pleiotropy and concordance were assessed using SNP-Effect Concordance Analysis. Conditional false discovery rate (cFDR) was used to condition BD and BPD GWAS results on genetic variants that influence brain regions. Linkage Disequilibrium Score Regression was used to examine genome-wide correlations between BD, BPD and brain regions. Mendelian randomization was used to test for causal associations between BD, BPD and each brain region, respectively. Results: There was evidence of significant pleiotropy and positive concordance between BD and BPD (ppleiotropy=5x10-4; pconcordance=1x10-6, OR=1.29). Significant pleiotropy was observed between BD and the thickness of several cortical regions and two gyri, namely the lateral occipital (p=2.25x10-5), pars triangularis (p=1.1x10-4), rostral anterior cingulate regions (p=2.18x10-4) and post central (p=7.9x10-6) and supramarginal gyri (p=1.45x10-7). Significant positive concordance was noted between BPD and thickness of the lateral occipital region (p=3x10-4; OR=1.02). After conditioning BD onto BPD and each regional brain GWAS, 171 additional variants were significantly associated with BD (FDR<0.05). Three additional SNPs were significantly associated with BPD when conditioned on thickness of the lateral orbitofrontal, lingual, precentral and supramarginal regions. Discussion: The findings here of genetic overlap between BD, BPD and altered brain structure, while novel, are consistent with previous work. The cFDR analyses, highlight synapse and neurotransmitter regulation as a key underlying mechanism between BD and altered brain regions. Further fine-grained delineation of the role of the environment in these relationships and the inclusion of non-European populations are critical next steps, as they may provide insight into risk factors, new areas of treatment and aid in early detection of at risk individuals.
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    Subjective wellbeing in a sample of South African, Xhosa people with schizophrenia
    (2018) Boshe, Judith; Stein, Dan; Campbell, Megan
    Subjective well-being when on neuroleptic treatment (SWBN), has been established as a good predictor of adherence, early response and prognosis in patients with schizophrenia(1, 2). The 20-item subjective well-being under neuroleptic treatment scale (SWN-K 20) is a self-rating scale that has been validated to measure SWBN(3). However, the SWN-K20 has not been previously used in a Low- and Middle-income country (LMIC). Aims and Objectives: This study explored the psychometric properties of SWN-K20 in a sample of Xhosa speaking African patients with schizophrenia, and investigated factors associated with SWBN in this population. Methods: As a part of a large genetic study, 244 study participants with a confirmed diagnosis of schizophrenia 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).Varimax rotation method was selected as we did not assume any correlation of the factors(4). Linear regression methods were used to determine predictors of SWBN in the sample population. Results: The PCA extracted 4 components which cumulatively explained 52.21% of the total variance. The internal consistency of the SWN-K 20 was 0.86 and those of the sub-scales ranged between 0.47 and 0.59. The total scores of the SWN-K 20 demonstrated moderate correlation r= 0.44 with GAF scores. The sub-scale scores had lower correlations ranging between r=.41 and r=.30 with the GAF scores. The total scores on SWN-K20 scale were used to explore factors influencing SWBN. There was a significant correlation between overall subjective well-being score with higher education level, increased illness severity and GAF scores. Discussion and Conclusion: The isiXhosa version of the SWN-20 scale can be used for clinical and research purposes in LMICs but predictors of SWBN in this population differed from those previously established in (high income countries) HICs. The individual sub-scales of the SWN-K20 were less reliable when translated into isiXhosa and hence the subs-scales were not a meaningful measure of specific domains of wellbeing . These findings merit evaluation to determine whether cultural and linguistic specific sub-cales might provide further insight and recommendations for use in South African context. Predictors of SWBN in this LMICs population were not comparable to those in HICs setting(5, 6). Older patients with lower baseline level of education, poor global functioning and less severe symptoms were noted to have lower SWBN and hence at risk of poor compliance. This information could provide guidance for clinicians, researchers and interventions that aim at improving compliance and the treatment experiences of this patient group.