Ethical, strategic and meaningful involvement of women living with HIV starts at the beginning

Namiba, Angelina; Orza, Luisa; Bewley, Susan; Crone, E Tyler; Vazquez, Marijo; Welbourn, Alice

doi:10.1016/s2055-6640(20)30469-6

Cited by 9 publications

(8 citation statements)

References 6 publications

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“…In order to conduct research that aligns with best practices in the HIV sector (Kumar et al, 2015;Namiba et al, 2016), we involved participants in multiple stages of the analysis, which we will explain below. Through these participatory engagements, we supported the meaningful involvement of participants in the analysis, while also not Following data collection, individual transcripts were manually coded and analyzed by the first and second author using IPA (Smith et al, 2009).…”

Section: Discussionmentioning

confidence: 99%

“…4MNet uses WhatsApp as a communication tool, providing informational, emotional, and practical support to members. Herein we present insights consolidated with research participants and stakeholders from Salamander Trust (the 4MNet Project host) to support the meaningful involvement of women living with HIV within research (Namiba et al, 2016;Kumar, Gruskin, Khosla, Narasimhan, 2015). This study explored 4MNet Mentor Mothers' experiences of using WhatsApp, to inform the design and implementation of future digital support services.…”

Section: Methodsmentioning

confidence: 99%

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“Support for the supporters”: a qualitative study of the use of WhatsApp by and for mentor mothers with HIV in the UK

Hay

Kwardem²,

Welbourn³

et al. 2020

AIDS Care

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Third-sector organizations, an important support for people living with HIV, increasingly use digital technology to improve service efficiency and reach.However, there is limited empirical evidence on this use by women living with HIV. The 4M Network (4MNet) is a peer-run UK-wide network of trained Mentor Mothers (MMs) living with HIV; it uses the WhatsApp platform as its primary digital communication tool. We report on a qualitative study about 4MNet MMs' experiences of using WhatsApp, to inform the design of future digital support services. Seven telephone interviews were conducted with five MMs and two project management team (PMT) members in February 2019.Interviews were analyzed using Interpretive Phenomenological Analysis (IPA).WhatsApp was found to have several key features that provided both positive and negative use considerations. WhatsApp eased communication among MMs and supported participation in group activities despite differing schedules and geographic locations. Challenges encountered with WhatsApp included: financial restrictions to data storage and continual access; self-confidence using technology; and security and privacy concerns. Peer-led digital communication is found to be acceptable and effective for women living with HIV. Understanding barriers and valued features of existing digital platforms increasingly used among potentially marginalized groups is vital for informing inclusive innovation.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

“Support for the supporters”: a qualitative study of the use of WhatsApp by and for mentor mothers with HIV in the UK

Hay

Kwardem²,

Welbourn³

et al. 2020

AIDS Care

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“…'Involvement is respectful engagement with and learning from communities'. 54 Furthermore, the 2017 World Health Organization (WHO) Consolidated Guideline on SRHR of women living with HIV, which was developed in collaboration with women living with HIV, recommends that Research about women living with HIV should be conducted with, by and for women living with HIV, as equal research partners. Research that is pursued and funded in this area should include justification for why it is important to women living with HIV.…”

Section: Meaningfully Engaging Communities: the Perspective Of The 4m...mentioning

confidence: 99%

From presumptive exclusion towards fair inclusion: perspectives on the involvement of women living with HIV in clinical trials, including stakeholders’ views

Namiba

Kwardem

Dhairyawan

et al. 2022

Therapeutic Advances in Infection

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2journals.sagepub.com/home/tai black women were under-recruited by around 35%. They also found that despite most of the global burden of HIV being in low and low-middle-income countries, most of the trials were carried out in high and high-middle-income countries. A systematicreview 5 of HIV cure research published in 2015 found that women, as well as older people and those of non-white ethnicities were profoundly under-represented.This pattern of under-recruitment is not only seen in HIV, but in many disease areas including cardiovascular disease, 7 cancer, 8 and mental health conditions. 9 Sex and gender differences 10 in the prevalence,incidence, 11 symptomatology, andprogression 12 of a range of diseases have been described, as have differences in responses to treatment. These differences in treatment responses are likely to be attributable to differences in how the body deals with a drug (pharmacokinetics) and the effect of the drug on the body (pharmacodynamics). This may affect the efficacy and tolerability of thedrug. 13 Importantly, sex 14 and gender 15 inequalities 16 in social and economic power also have a large impact on health outcomes, affecting health-seeking behaviour, access to, and utilisation of healthcare services.journals.sagepub.com/home/tai 13Visit SAGE journals online journals.sagepub.com/ home/tai

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“… 11 30 Moreover, groups who are already socially and structurally marginalised tend to bear the burden of superficial codevelopment, including young people, 28 31 those living with HIV/AIDS 32 and women experiencing intimate partner violence (IPV). 32 33 …”

Section: Introductionmentioning

confidence: 99%

Challenges and opportunities in coproduction: reflections on working with young people to develop an intervention to prevent violence in informal settlements in South Africa

et al. 2023

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Coproduction is widely recognised as essential to the development of effective and sustainable complex health interventions. Through involving potential end users in the design of interventions, coproduction provides a means of challenging power relations and ensuring the intervention being implemented accurately reflects lived experiences. Yet, how do we ensure that coproduction delivers on this promise? What methods or techniques can we use to challenge power relations and ensure interventions are both more effective and sustainable in the longer term? To answer these questions, we openly reflect on the coproduction process used as part of Siyaphambili Youth (‘Youth Moving Forward’), a 3-year project to create an intervention to address the social contextual factors that createsyndemicsof health risks for young people living in informal settlements in KwaZulu-Natal province in South Africa. We identify four methods or techniques that may help improve the methodological practice of coproduction: (1) building trust through small group work with similar individuals, opportunities for distance from the research topic and mutual exchanges about lived experiences; (2) strengthening research capacity by involving end users in the interpretation of data and explaining research concepts in a way that is meaningful to them; (3) embracing conflicts that arise between researchers’ perspectives and those of people with lived experiences; and (4) challenging research epistemologies through creating spaces for constant reflection by the research team. These methods are not a magic chalice of codeveloping complex health interventions, but rather an invitation for a wider conversation that moves beyond a set of principles to interrogate what works in coproduction practice. In order to move the conversation forward, we suggest that coproduction needs to be seen as its own complex intervention, with research teams as potential beneficiaries.

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Ethical, strategic and meaningful involvement of women living with HIV starts at the beginning

Cited by 9 publications

References 6 publications

“Support for the supporters”: a qualitative study of the use of WhatsApp by and for mentor mothers with HIV in the UK

“Support for the supporters”: a qualitative study of the use of WhatsApp by and for mentor mothers with HIV in the UK

From presumptive exclusion towards fair inclusion: perspectives on the involvement of women living with HIV in clinical trials, including stakeholders’ views

Challenges and opportunities in coproduction: reflections on working with young people to develop an intervention to prevent violence in informal settlements in South Africa

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