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171 results on '"Ngwenya, Nothando"'

4. Lives Interrupted: Navigating Hardship During COVID-19 Provides Lessons in Solidarity and Visibility for Mobile Young People in South Africa and Uganda

Author

Zuma, Thembelihle, King, Rachel, Ngwenya, Nothando, Kasujja, Francis Xavier, Chimbindi, Natsayi, Kawuma, Rachel, Shahmanesh, Maryam, Bernays, Sarah, and Seeley, Janet

Subjects
Development Studies, Human Society, Clinical Research, Reduced Inequalities, East and Southern Africa, poverty, risk, social connections, support, Applied Economics, Human Geography, Policy and Administration, Applied economics, Development studies, Policy and administration
Abstract

We examine data from young women and men in South Africa and young female sex workers in Uganda to explore the inequalities and hardships experienced during the COVID-19 pandemic and investigate the opportunities and ability presented to navigate in a virtual world to build an inclusive supportive future for young people on the move. We argue that against the backdrop of a fragile past, young people who see their today disturbed, tomorrow reshaped and their futures interrupted, need support to interact with their social environment and adjust their lives and expectations amidst the changing influences of social forces.

Published
2021

12. PA-257 ‘Nothing about us without us’: multi-country adolescent patient-led recruitment information in the long-acting treatment in adolescents (LATA) trial – an animated video to compliment ‘traditional’ participant information

Author

Conway, Magda, primary, Jafta, Lungile, additional, Shibemba, Mercy, additional, South, Annabelle, additional, Kityo, Cissy, additional, Bwakura-Dangarembizi, Mutsa, additional, Siika, Abraham, additional, Archary, Mo, additional, Akabwai, George, additional, Okello, Resty Babirye, additional, Mugerwa, Henry, additional, Nathoo, Kusum, additional, Mujuru, Hilda, additional, Chidziva, Ennie, additional, Bhiri, Joyline, additional, Nyandiko, Winstone, additional, Kirui, Viola, additional, Kiilu, C, additional, Mosia, R, additional, Mngqbisa, Rosie, additional, Ngwenya, Nothando, additional, Seunanden, Tamlyn, additional, Namukwaya, Stella, additional, Seeley, Janet, additional, Apoto, Naomi, additional, Thomason, Margaret, additional, Bush, Molly, additional, Dodds, Becky, additional, Ford, Debbie, additional, Pett, Sarah, additional, and Kekitiinwa-Rukyalekere, Adeodata, additional

Published
2023
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21. Influences on decision-making about disclosure of HIV status by adolescents and young adults living with HIV in KwaZulu-Natal, South Africa.

Author

Smith, Thandeka, Seeley, Janet, Shahmanesh, Maryam, Psaros, Christina, Munikwa, Chiedza, and Ngwenya, Nothando

Subjects
HIV infections, SOCIAL support, SOCIAL stigma, SELF-disclosure, DECISION making, DESCRIPTIVE statistics, RESEARCH funding, JUDGMENT sampling, THEMATIC analysis, PSYCHOLOGY of HIV-positive persons
Abstract

Background: Adolescents and young adults living with HIV (AYA) are faced with the challenge of living with a life-long chronic condition. We investigated the influences on the decisions by AYA to disclose their HIV status to family, intimate partners and friends. Methods: Twenty AYA aged between 15 and 24 years were purposely selected through local community-based organisations in eThekwini municipality and uMkhanyakude district in KwaZulu-Natal Province, South Africa. Virtual in-depth interviews were conducted between September 2020 to October 2021 using a topic guide focusing on HIV-status disclosure and the impact of stigma on decision-making capacity. An iterative thematic process was used for analysis. Results: Findings revealed the challenges that AYA experience for disclosure because of stigma and how this impacts their decision-making capacity. Family and friends influenced AYA in processing their discovery of their HIV status offering support needed to manage living with HIV. However, for some AYA disclosing to relatives, friends and intimate partners was difficult because of fears of rejection and recrimination. The act of disclosure was influenced by both internalised and external stigma and the type of relationships and interactions that AYA had with relatives, friends and caregivers. Conclusions: The decision to disclose is challenging for AYA because of the fear of rejection, along with internal and external stigma. The provision of support, whether from family or peers, is important. Enhancing the decision-making capacity of AYA is essential for developing their self-esteem as well as supporting future healthcare choices. [ABSTRACT FROM AUTHOR]

Published
2023
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22. A network of empirical ethics teams embedded in research programmes across multiple sites: opportunities and challenges in contributing to COVID-19 research and responses

Author

Ngwenya, Nothando, primary, Ilo Van Nuil, Jennifer, additional, Nyirenda, Deborah, additional, Chambers, Mary, additional, Cheah, Phaik Yeong, additional, Seeley, Janet, additional, Chi, Primus, additional, Mafuleka, Lindiwe, additional, Nkosi, Busisiwe, additional, Kamuya, Dorcas, additional, Davies, Alun, additional, Schneiders, Mira L, additional, Mumba, Noni, additional, Dlamini, Siphephelo, additional, Desmond, Nicola, additional, Marsh, Vicki, additional, Rippon, Dinnah, additional, Parker, Michael, additional, and Molyneux, Sassy, additional

Published
2023
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27. Additional file 1 of Participant recall and understandings of information on biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa

Author

Luthuli, Manono, Ngwenya, Nothando, Gumede, Dumsani, Gunda, Resign, Gareta, Dickman, Koole, Olivier, Siedner, Mark J., Wong, Emily B., and Seeley, Janet

Abstract

Additional file 1. Participant Information Sheets and Informed Consent Forms. Description of data: Vukuzazi Participant Information Sheet.

Published
2022
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29. A network of empirical ethics teams embedded in research programmes across multiple sites: opportunities and challenges in contributing to COVID-19 research and responses

Author

Ngwenya, Nothando, primary, Ilo Van Nuil, Jennifer, additional, Nyirenda, Deborah, additional, Chambers, Mary, additional, Cheah, Phaik Yeong, additional, Seeley, Janet, additional, Chi, Primus, additional, Mafuleka, Lindiwe, additional, Nkosi, Busisiwe, additional, Kamuya, Dorcas, additional, Davies, Alun, additional, Schneiders, Mira Leonie, additional, Mumba, Noni, additional, Dlamini, Siphephelo, additional, Desmond, Nicola, additional, Marsh, Vicki, additional, Rippon, Dinnah, additional, Parker, Michael, additional, and Molyneux, Sassy, additional

Published
2022
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30. 'This is what is going to help me': Developing a co-designed and theoretically informed harm reduction intervention for mobile youth in South Africa and Uganda.

Author

Bernays, Sarah, Lanyon, Chloe, Tumwesige, Edward, Aswiime, Allen, Ngwenya, Nothando, Dlamini, Vuyiswa, Shahmanesh, Maryam, and Seeley, Janet

Subjects
HIV prevention, NOMADS, INTERVIEWING, HARM reduction, QUALITATIVE research, CONCEPTUAL structures, EXPERIENCE, AT-risk people, THEORY, DESCRIPTIVE statistics, RESEARCH funding, DATA analysis software, PSYCHOLOGICAL resilience, LONGITUDINAL method, ADULT education workshops
Abstract

Young migrants in sub-Saharan Africa are particularly vulnerable to HIV-acquisition. Despite this, they are consistently under-served by services, with low uptake and engagement. We adopted a community-based participatory research approach to conduct longitudinal qualitative research among 78 young migrants in South Africa and Uganda. Using repeat in-depth interviews and participatory workshops we sought to identify their specific support needs, and to collaboratively design an intervention appropriate for delivery in their local contexts. Applying a protection-risk conceptual framework, we developed a harm reduction intervention which aims to foster protective factors, and thereby nurture resilience, for youth 'on the move' within high-risk settings. Specifically, by establishing peer supporter networks, offering a 'drop-in' resource centre, and by identifying local adult champions to enable a supportive local environment. Creating this supportive edifice, through an accessible and cohesive peer support network underpinned by effective training, supervision and remuneration, was considered pivotal to nurture solidarity and potentially resilience. This practical example offers insights into how researchers may facilitate the co-design of acceptable, sustainable interventions. [ABSTRACT FROM AUTHOR]

Published
2023
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34. Participant understanding of informed consent in a multidisease community-based health screening and biobank platform in rural South Africa

Author

Ngwenya, Nothando, Luthuli, Manono, Gunda, Resign, Gumede, Ntombizonke A, Adeagbo, Oluwafemi, Nkosi, Busisiwe, Gareta, Dickman, Koole, Olivier, Siedner, Mark, Wong, Emily B, Seeley, Janet, and Vukuzazi team

Abstract

BACKGROUND: In low- and middle-income settings, obtaining informed consent for biobanking may be complicated by socio-economic vulnerability and context-specific power dynamics. We explored participants experiences and perceptions of the research objectives in a community-based multidisease screening and biospecimen collection platform in rural KwaZulu-Natal, South Africa. METHODS: We undertook semi-structured in-depth interviews to assess participant understanding of the informed consent, research objectives and motivation for participation. RESULTS: Thirty-nine people participated (individuals who participated in screening/biospecimen collection and those who did not and members of the research team). Some participants said they understood the information shared with them. Some said they participated due to the perceived benefits of the reimbursement and convenience of free healthcare. Most who did not participate said it was due to logistical rather than ethical concerns. None of the participants recalled aspects of biobanking and genetics from the consent process. CONCLUSIONS: Although most people understood the study objectives, we observed challenges to identifying language appropriate to explain biobanking and genetic testing to our target population. Engagement with communities to adopt contextually relevant terminologies that participants can understand is crucial. Researchers need to be mindful of the impact of communities' socio-economic status and how compensation can be potentially coercive.

Published
2020

36. Access to primary healthcare during lockdown measures for COVID-19 in rural South Africa: an interrupted time series analysis

Author

Siedner, Mark J, primary, Kraemer, John D, additional, Meyer, Mark J, additional, Harling, Guy, additional, Mngomezulu, Thobeka, additional, Gabela, Patrick, additional, Dlamini, Siphephelo, additional, Gareta, Dickman, additional, Majozi, Nomathamsanqa, additional, Ngwenya, Nothando, additional, Seeley, Janet, additional, Wong, Emily, additional, Iwuji, Collins, additional, Shahmanesh, Maryam, additional, Hanekom, Willem, additional, and Herbst, Kobus, additional

Published
2020
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38. Protocol: Leveraging a demographic and health surveillance system for Covid-19 Surveillance in rural KwaZulu-Natal

Author

Siedner, Mark J., primary, Harling, Guy, additional, Derache, Anne, additional, Smit, Theresa, additional, Khoza, Thandeka, additional, Gunda, Resign, additional, Mngomezulu, Thobeka, additional, Gareta, Dickman, additional, Majozi, Nomathamsanqa, additional, Ehlers, Eugene, additional, Dreyer, Jaco, additional, Nxumalo, Siyabonga, additional, Dayi, Njabulo, additional, Ording-Jesperson, Gregory, additional, Ngwenya, Nothando, additional, Wong, Emily, additional, Iwuji, Collins, additional, Shahmanesh, Maryam, additional, Seeley, Janet, additional, De Oliveira, Tulio, additional, Ndung'u, Thumbi, additional, Hanekom, Willem, additional, and Herbst, Kobus, additional

Published
2020
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39. Access to primary healthcare during lockdown measures for COVID-19 in rural South Africa: a longitudinal cohort study

Author

Siedner, Mark J., primary, Kraemer, John D., additional, Meyer, Mark J., additional, Harling, Guy, additional, Mngomezulu, Thobeka, additional, Gabela, Patrick, additional, Dlamini, Siphephelo, additional, Gareta, Dickman, additional, Majozi, Nomathamsanqa, additional, Ngwenya, Nothando, additional, Seeley, Janet, additional, Wong, Emily, additional, Iwuji, Collins, additional, Shahmanesh, Maryam, additional, Hanekom, Willem, additional, and Herbst, Kobus, additional

Published
2020
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44. Understanding care when cure is not likely for young adults who face cancer: a realist analysis of data from patients, families and healthcare professionals

Author

Kenten, Charlotte, primary, Ngwenya, Nothando, additional, Gibson, Faith, additional, Flatley, Mary, additional, Jones, Louise, additional, Pearce, Susie, additional, Wong, Geoff, additional, Black, Kath M, additional, Haig, Sue, additional, Hough, Rachael, additional, Hurlow, Adam, additional, Stirling, L Caroline, additional, Taylor, Rachel M, additional, Tookman, Adrian, additional, and Whelan, Jeremy, additional

Published
2019
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45. Investigation of post-trial access views among study participants and stakeholders using photovoice and semistructured interviews

Author

Ngwenya, Nothando, Iwuji, Collins, Petersen, Nabeel, Myeni, Nompilo, Nxumalo, Samukelisiwe, Ngema, Ursula, and Seeley, Janet

Abstract

PurposeWe examine the levels of post-trial responsibility ascribed to different stakeholders, following a community-based clinical trial and how the ‘responsibility’ is understood.MethodsWe employed photovoice, unstructured observations and key informant interviews to gain insights into contexts of access to care following transition to the public health system post trial. We used an inductive narrative analysis to explore experiences and understandings of post-trial access (PTA).ResultsIn their photovoice stories, many participants expressed a sense of abandonment after the trial. This was viewed as a contributing factor to failing to re-engage with care available in the public health system. This led to the experiences of loss as some trial participants defaulted and died. Research investigators, department of health participants and sponsor agreed that PTA was especially important for communities in resource-limited settings. The government has an obligation towards its citizens while researchers have a responsibility to ensure a smooth transition of patients to public clinics. Sponsors have a responsibility to ensure that the trial is conducted in accordance with the protocol and post-trial agreements are in place and adhered to. Research partnerships among stakeholders were affected by power imbalances making it difficult to negotiate and plan for post-trial care responsibilities.ConclusionsThe research community still struggles with understanding the scope of PTA responsibilities. Power dynamics between public health actors and research sponsors need to be managed to ensure that government involvement is not tokenistic. The responsibility of trial participants and ethics committees needs to be investigated further.

Published
2022
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46. Value and Limitations of Broad Brush Surveys Used in Community-Randomized Trials in Southern Africa

Author

Bond, Virginia, primary, Ngwenya, Fredrick, additional, Murray, Emma, additional, Ngwenya, Nothando, additional, Viljoen, Lario, additional, Gumede, Dumile, additional, Bwalya, Chiti, additional, Mantantana, Jabulile, additional, Hoddinott, Graeme, additional, Dodd, Peter J., additional, Ayles, Helen, additional, Simwinga, Musonda, additional, Wallman, Sandra, additional, and Seeley, Janet, additional

Published
2018
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50. Sharing bad news of a lung cancer diagnosis: understanding through communication privacy management theory

Author

Ngwenya, Nothando, Farquhar, Morag, Ewing, Gail, Farquhar, Morag [0000-0001-7991-7679], Ewing, Gail [0000-0001-9547-7247], and Apollo - University of Cambridge Repository

Subjects
Male, Physician-Patient Relations, Lung Neoplasms, communication, Emotions, Social Support, Friends, Middle Aged, Truth Disclosure, Privacy, oncology, cancer, Humans, Family, Female, disclosure, qualitative research
Abstract

Background: The aim of this paper is to understand the process of information disclosure and privacy as patients share their news of lung cancer with significant others. Methods: Twenty patients with lung cancer and 17 family members/friends accompanying them at diagnosis-giving completed either individual or dyad semi-structured interviews. Initial thematic analysis, then Petronio's Communication Privacy Management theory was used to inform interpretation. Results: Patients described a sense of ownership of the news of their cancer and sought control of how, when and with whom it was shared. Family members expressed a need to follow the patients' rules in sharing this news, which limited their own support systems. Patients and family members had to live within the relational communication boundaries in order to maintain their trusting relationship and avoid potential disruptions. Conclusion: Patients as individuals are strongly interlinked with significant others, which impacts on their experience of disclosing private information. This shapes their psychological processes and outcomes impacting on their illness experience. This should be considered when developing interventions to support patients with sharing bad news. Copyright © 2015 John Wiley & Sons, Ltd.

Published
2016

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