Browsing by Author "Seeley, Janet"

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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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    Informing the measurement of wellbeing among young people living with HIV in sub-Saharan Africa for policy evaluations: a mixed-methods systematic review
    (2020-05-05) Govindasamy, Darshini; Seeley, Janet; Olaru, Ioana D; Wiyeh, Alison; Mathews, Catherine; Ferrari, Giulia
    Young people living with HIV (YPLHIV) in sub-Saharan Africa (SSA) are at high risk of having a poor quality of life. Addressing wellbeing explicitly within HIV/AIDS policies could assist mitigation efforts. However, guidance on wellbeing measures to evaluate policies for YPLHIV is scarce. The aims of this mixed-methods review were to identify: i) key dimensions of wellbeing and ii) wellbeing measures that align to these dimensions among YPLHIV (15–24 years) in SSA. We searched six social science and medical databases, including grey literature. We included studies that examined correlates and lived experiences of wellbeing, among YPLHIV in SSA, from January 2000 to May 2019. Two reviewers independently screened abstracts and full texts and assessed methodological quality of included articles. We analysed quantitative and qualitative data using descriptive and meta-ethnographic approaches, respectively. Thereafter, we integrated findings using a framework approach. We identified 6527 citations. Of these, 10 quantitative and 30 qualitative studies were included. Being male, higher educational status, less stigma and more social support were likely correlates of wellbeing. Themes that shaped experiences suggestive of wellbeing were: 1) acceptance and belonging— stigma, social support; 2) coping; 3) standard of living. Our final synthesis found that the following dimensions potentially characterise wellbeing: self-acceptance, belonging, autonomy; positive relations, environmental mastery, purpose in life. Wellbeing for YPLHIV is multi-dimensional and relational. Relevant measures include the Personal Wellbeing Index, Ryff’s Psychological Wellbeing Scale and Mental Health Continuum Short Form. However, psychometric evaluations of these scales among YPLHIV in SSA are needed.
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    A perpetual source of DNA or something really different: ethical issues in the creation of cell lines for African genomics research
    (BioMed Central, 2014-08-07) de Vries, Jantina; Abayomi, Akin; Brandful, James; Littler, Katherine; Madden, Ebony; Marshall, Patricia; Ouwe Missi Oukem-Boyer, Odile; Seeley, Janet
    Background: The rise of genomic studies in Africa – not least due to projects funded under H3Africa – is associated with the development of a small number of biorepositories across Africa. For the ultimate success of these biorepositories, the creation of cell lines including those from selected H3Africa samples would be beneficial. In this paper, we map ethical challenges in the creation of cell lines. Discussion: The first challenge we identified relates to the moral status of cells living in culture. There is no doubt that cells in culture are alive, and the question is how this characteristic is relevant to ethical decision-making. The second challenge relates to the fact that cells in culture are a source of cell products and mitochondrial DNA. In combination with other technologies, cells in culture could also be used to grow human tissue. Whilst on the one hand, this feature increases the potential utility of the sample and promotes science, on the other it also enables further scientific work that may not have been specifically consented to or approved. The third challenge relates to ownership over samples, particularly in cases where cell lines are created by a biobank, and in a different country than where samples were collected. Relevant questions here concern the export of samples, approval of secondary use and the acceptability of commercialisation. A fourth challenge relates to perceptions of blood and bodily integrity, which may be particularly relevant for African research participants from certain cultures or backgrounds. Finally, we discuss challenges around informed consent and ethical review. Summary: In this paper, we sought to map the myriad of ethical challenges that need to be considered prior to making cell line creation a reality in the H3Africa project. Considering the relative novelty of this practice in Africa, such challenges will need to be considered, discussed and potentially be resolved before cell line creation in Africa becomes financially feasible and sustainable. We suggest that discussions need to be undertaken between stakeholders internationally, considering the international character of the H3Africa project. We also map out avenues for empirical research.
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    A qualitative study of mental health explanatory models, and the perceived impact of life experiences on mental health, in HIV infected adolescents in rural and urban Uganda
    (2017) Nalukenge, Winifred; Van der Westhuizen, Claire; Seeley, Janet
    Background: Survival of children and adolescents with HIV/AIDS has greatly improved with antiretroviral treatment. These young people now live with a chronic, rather than a fatal disease, which has brought into focus issues of quality of life, including the emotional and behavioral wellbeing of those living with the disease. HIV infection is associated with poor mental health and a high prevalence of behavioral and emotional problems in affected adolescents. Despite this burden of emotional and behavioral problems, the majority of HIV care services in sub-Saharan Africa do not have mental health care services specifically targeting adolescents with HIV. In order to address mental health in this population, it is important to explore their explanatory models to understand aspects such as how they view their symptoms, and what treatment or support they prefer. At the present time, research is scarce regarding explanatory models of mental disorders in HIV-positive adolescents and no study has been conducted in Uganda. This study aimed to address this gap by exploring the explanatory models of mental disorders and perceived daily life challenges in HIV-infected adolescents who had been diagnosed with a common mental disorder. Methods: This qualitative study was nested in a longitudinal epidemiological study that investigated prevalence, incidence and risk factors for mental health problems in HIV-infected children and adolescents in rural and urban Uganda. In-depth interviews were conducted with adolescents aged 12 to 17 years who had been diagnosed with depression, anxiety or attention deficit hyperactivity disorder (ADHD). Case vignettes were used to enable adolescents to talk about their experiences and daily life challenges. Written consent and assent were sought from caregivers and adolescents respectively. Data were processed and analyzed thematically. NVivo-11 was used to manage data for analysis. Results: Twenty-one adolescents participated in the study. Most adolescents (9/21) in the study were living with their grandparents. Twelve were in primary school and 4 had dropped out. The main findings were: (i) the adolescents had not been informed about their mental disorder diagnoses and none viewed their symptoms as illness, (ii) they attributed their symptoms to daily life problems, such as poverty and interpersonal relationship problems, and did not mention biomedical or spiritual causes, (iii) they thought that their symptoms would improve with time, and financial and emotional support were also important. Conclusion: The findings of this study highlight the need for action at the mental health policy and practice levels. The main areas for such intervention include mental health literacy, screening and intervention in healthcare settings, and psychosocial interventions in community and school settings for affected adolescents and their caregivers.
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    A qualitative study to identify critical attributes and attribute-levels for a discrete choice experiment on oral pre-exposure prophylaxis (PrEP) delivery among young people in Cape Town and Johannesburg, South Africa
    (2021-01-06) Dietrich, Janan J; Atujuna, Millicent; Tshabalala, Gugulethu; Hornschuh, Stefanie; Mulaudzi, Mamakiri; Koh, Michelle; Ahmed, Nadia; Muhumuza, Richard; Ssemata, Andrew S; Otwombe, Kennedy; Bekker, Linda-Gail; Seeley, Janet; Martinson, Neil A; Terris-Prestholt, Fern; Fox, Julie
    Background The uptake and adherence of daily oral PrEP has been poor in high-risk populations in South Africa including young people. We used qualitative research methods to explore user preferences for daily and on-demand oral PrEP use among young South Africans, and to inform the identification of critical attributes and attribute-levels for quantitative analysis of user preferences, i.e. a discrete choice experiment (DCE). Methods Data were collected between September and November 2018 from eight group discussions and 20 in-depth interviews with young people 13 to 24 years in Cape Town and Johannesburg. Using a convenience sampling strategy, participants were stratified by sex and age. Interviewers used a semi-structured interview guide to discuss several attributes (dosing regimen, location, costs, side effects, and protection period) for PrEP access and use. Group discussions and in-depth interviews were audio-recorded, transcribed verbatim and translated to English. We used framework analysis to explore context-specific attributes and attribute-levels for delivering oral PrEP in South Africa. The adolescent community advisory board, expert and study team opinions were consulted for the final DCE attributes and levels. Results We enrolled 74 participants who were 51% (n = 38/74) male, had a median age of 18.5 [Interquartile range = 16–21.25] years, 91% (n = 67/74) identified as heterosexual and 49% (n = 36/74) had not completed 12th grade education. Using the qualitative data, we identified five candidate attributes including (1) dosing regimen, (2) location to get PrEP, (3) cost, (4) route of administration and (5) frequency. After discussions with experts and the study team, we revised the DCE to include the following five attributes and levels: dosing regime: daily, and on-demand PrEP; location: private pharmacy, public clinic, mobile clinic, ATM); cost: free-of-charge, R50 (~2GBP), R265 (~12GBP); side effects: nausea, headache, rash; and duration of protection: fulltime protection versus when PrEP is used). Conclusions There is limited literature on qualitative research methods describing the step-by-step process of developing a DCE for PrEP in adolescents, especially in resource-constrained countries. We provide the process followed for the DCE technique to understand user preferences for daily and on-demand oral PrEP among young people in South Africa.
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    Tuberculosis infection prevention and control: why we need a whole systems approach
    (2020-05-25) Kielmann, Karina; Karat, Aaron S; Zwama, Gimenne; Colvin, Christopher; Swartz, Alison; Voce, Anna S.; Yates, Tom A; MacGregor, Hayley; McCreesh, Nicky; Kallon, Idriss; Vassall, Anna; Govender, Indira; Seeley, Janet; Grant, Alison D
    Infection prevention and control (IPC) measures to reduce transmission of drug-resistant and drug-sensitive tuberculosis (TB) in health facilities are well described but poorly implemented. The implementation of TB IPC has been assessed primarily through quantitative and structured approaches that treat administrative, environmental, and personal protective measures as discrete entities. We present an on-going project entitled Umoya omuhle (“good air”), conducted in two provinces of South Africa, that adopts an interdisciplinary, ‘whole systems’ approach to problem analysis and intervention development for reducing nosocomial transmission of Mycobacterium tuberculosis (Mtb) through improved IPC. We suggest that TB IPC represents a complex intervention that is delivered within a dynamic context shaped by policy guidelines, health facility space, infrastructure, organisation of care, and management culture. Methods drawn from epidemiology, anthropology, and health policy and systems research enable rich contextual analysis of how nosocomial Mtb transmission occurs, as well as opportunities to address the problem holistically. A ‘whole systems’ approach can identify leverage points within the health facility infrastructure and organisation of care that can inform the design of interventions to reduce the risk of nosocomial Mtb transmission.