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In the past decades, donors and development actors have been increasingly mindful of the evidence to support long-term, dynamic social norms change. This paper draws lessons and implications on scaling social norms change initiatives for gender equality to prevent violence against women and girls (VAWG) and improve sexual and reproductive health and rights (SRHR), from the Community for Understanding Scale Up (CUSP). CUSP is a group of nine organisations working across four regions with robust experience in developing evidence-based social norms change methodologies and supporting their scale-up across various regions and contexts. More specifically, the paper elicits learning from methodologies and experiences from five CUSP members – GREAT, IMAGE, SASA!, Stepping Stones, and Tostan. The discussion raises political questions around the current donor landscape including those positioned to assume leadership to take such methodologies to scale, and the current evaluation paradigm to measure social norms change at scale. CUSP makes the following recommendations for donors and implementers to scale social norms initiatives effectively and ethically: invest in longer-term programming, ensure fidelity to values of the original programmes, fund women’s rights organisations, prioritise accountability to their communities and demands, critically examine the government and marketplace’s role in scale, and rethink evaluation approaches to produce evidence that guides scale-up processes and fully represents the voices of activists and communities from the Global South.

Population health surveys are rarely comprehensive in addressing sexual health, and population-representative surveys often lack standardised measures for collecting comparable data across countries. We present a sexual health survey instrument and implementation considerations for population-level sexual health research. The brief, comprehensive sexual health survey and consensus statement was developed via a multi-step process (an open call, a hackathon, and a modified Delphi process). The survey items, domains, entire instruments, and implementation considerations to develop a sexual health survey were solicited via a global crowdsourcing open call. The open call received 175 contributions from 49 countries. Following review of submissions from the open call, 18 finalists and eight facilitators with expertise in sexual health research, especially in low- and middle-income countries (LMICs), were invited to a 3-day hackathon to harmonise a survey instrument. Consensus was achieved through an iterative, modified Delphi process that included three rounds of online surveys. The entire process resulted in a 19-item consensus statement and a brief sexual health survey instrument. This is the first global consensus on a sexual and reproductive health survey instrument that can be used to generate cross-national comparative data in both high-income and LMICs. The inclusive process identified priority domains for improvement and can inform the design of sexual and reproductive health programs and contextually relevant data for comparable research across countries.

This chapter describes the 4M Programme, a perinatal peer mentoring programme led by, with and for women living with HIV in the UK. It considers HIV and pregnancy both within a UK and global context, describing the epidemiology as well as policy and practice. We then outline the background development and principles of the 4M programme, before highlighting successes and challenges of the programme and discussing future development.

Population health surveys are rarely comprehensive in addressing sexual health, and population-representative surveys often lack standardized measures for collecting comparable data across countries. We present a sexual health survey instrument and implementation considerations for population-level sexual health research. The brief, comprehensive sexual health survey and consensus statement was developed via a multi-step process (an open call, a hackathon, and a modified Delphi process). The survey items, domains, entire instruments, and implementation considerations to develop a sexual health survey were solicited via a global crowdsourcing open call. The open call received 175 contributions from 49 countries. Following review of submissions from the open call, 18 finalists and eight facilitators with expertise in sexual health research, especially in low and middle-income countries (LMICs), were invited to a 3-day hackathon to harmonize a survey instrument. Consensus was achieved through an iterative, modified Delphi process that included three rounds of online surveys. The entire process resulted in a 19-item consensus statement and a 10-minute sexual health survey instrument. This is the first global consensus on a sexual and reproductive health survey instrument that can be used to generate cross-national comparative data in both high-income and LMICs. The inclusive process identified priority domains for improvement and can inform the design of sexual and reproductive health programs and contextually relevant data for comparable research across countries.Key points–National population-representative surveys assessing sexual practices, behaviours and health-related outcomes focus on high-income countries and different sexual health measures are often used.–There is a lack of population-level representative sexual health research in low- and middle-income countries.–Existing comparable data on sexual practices and behaviours across countries are limited due to the absence of a standardized global sexual health survey instrument.–We report the global consensus on a set of core sexual health items within a 10-minute survey instrument that accommodates the needs and priorities of people from LMICs and various legal and cultural contexts across countries.–The consensus process breaks new ground in terms of incorporating feedback from diverse individuals using a crowdsourcing open call and hackathon process.

Objective: To evaluate the effects of a transformative training programme on children aged 5–14 years affected by HIV and their caregivers. Method: A formative process was used to draft, pilot and finalise training materials in Tanzania. We ran workshops with children living with HIV, their caregivers and some siblings in four communities. We assessed changes in knowledge, attitudes and well-being, and compared the health of child participants living with HIV with that of a control group of children living with HIV. Results: Although we intentionally excluded ‘disclosure’ of HIV sero-status to children as an indicator, the proportion who knew their sero-status increased from 27% to 93%. Assessment of clinical data before and after the workshops showed a statistically significant increase ( p-value of Conclusion: The Stepping Stones with Children programme can achieve multiple outcomes, including disclosure and better adherence to treatment, to reduce the impact of the adverse childhood experience of being affected by HIV. It is possible and acceptable to include children aged five and over in learning about HIV, sexual health and skills to improve their resilience.

Many women living with HIV experience a range of physical, social, and psychological challenges linked to their HIV status. Psychosocial support interventions may help women cope with these challenges and may allow women to make better decisions around their sexual and reproductive health (SRH), yet no reviews have summarized the evidence for the impact of such interventions on well-being and SRH decision-making among women living with HIV. We systematically reviewed the evidence for non-specialist delivered psychosocial support interventions for women living with HIV, which are particularly relevant in low-resource settings. Outcomes of interest included mental, emotional, social well-being and/or quality of life, common mental health disorders, and SRH decision-making. Searching was conducted through four electronic databases and secondary reference screening. Systematic methods were used for screening and data abstraction. Nine articles met the inclusion criteria, showing positive or mixed results for well-being and depressive symptoms indicators. No studies reported on SRH decision-making outcomes. The available evidence suggests that psychosocial support interventions may improve self-esteem, coping and social support, and reduce depression, stress, and perceived stigma. However, evidence is mixed. Most studies placed greater emphasis on instrumental health outcomes to prevent HIV transmission than on the intrinsic well-being and SRH of women living with HIV. Many interventions included women living with HIV in their design and implementation. More research is required to understand the most effective interventions, and their effect on sexual and reproductive health and rights.

To determine the sexual and reproductive health priorities of women living with human immunodeficiency virus (HIV) and to allow the values and preferences of such women to be considered in the development of new guidelines.A core team created a global reference group of 14 women living with HIV and together they developed a global community online survey. The survey, which contained mandatory and optional questions, was based on an appreciative enquiry approach in which the life-cycle experiences of women living with HIV were investigated. The same set of questions was also used in focus group discussions led by the global reference group.The study covered 945 women (832 in the survey and 113 in the focus groups) aged 15-72 years in 94 countries. Among the respondents to the optional survey questions, 89.0% (427/480) feared or had experienced gender-based violence, 56.7% (177/312) had had an unplanned pregnancy, 72.3% (227/314) had received advice on safe conception and 58.8% (489/832) had suffered poor mental health after they had discovered their HIV-positive status.The sexual and reproductive health needs and rights of women living with HIV are complex and require a stronger response from the health sector. The online survey placed the voices of women living with HIV at the start of the development of new global guidelines. Although not possible in some contexts and populations, a similar approach would merit replication in the development of guidelines for many other health considerations.Déterminer les priorités en matière de santé sexuelle et génésique des femmes vivant avec le virus de l'immunodéficience humaine (VIH) et permettre la prise en considération des valeurs et préférences de ces femmes lors de l'élaboration de nouvelles lignes directrices.Une équipe de base a formé un groupe de référence mondial, composé de 14 femmes vivant avec le VIH, avec lequel elle a préparé une enquête communautaire en ligne à l'échelle mondiale. Cette enquête, qui comportait des questions obligatoires et facultatives, s'appuyait sur une démarche appréciative qui a permis d'examiner l'expérience de vie des femmes vivant avec le VIH. La même série de questions a été utilisée lors de réunions de groupes de discussion animées par le groupe de référence mondial.L'étude a pris en compte 945 femmes (832 qui ont répondu à l'enquête et 113 dans les groupes de discussion) âgées de 15 à 72 ans dans 94 pays. Parmi les femmes ayant répondu aux questions facultatives de l'enquête, 89,0% (427/480) craignaient ou avaient déjà subi des violences sexistes, 56,7% (177/312) avaient eu une grossesse non désirée, 72,3% (227/314) avaient reçu des conseils sur la conception en toute sécurité et 58,8% (489/832) avaient connu des problèmes de santé mentale après avoir appris qu'elles étaient séropositives.Les droits et les besoins des femmes vivant avec le VIH en matière de santé sexuelle et génésique sont complexes et nécessitent une réponse plus forte du secteur de la santé. Cette enquête en ligne a permis aux femmes vivant avec le VIH de faire entendre leur voix pour l'élaboration de nouvelles lignes directrices mondiales. Bien que cela ne soit pas possible dans certains contextes et certaines populations, une démarche similaire mériterait d'être appliquée à l'élaboration de lignes directrices concernant de nombreuses autres questions de santé.Determinar las prioridades de salud sexual y reproductiva de mujeres que viven con el virus de la inmunodeficiencia humana (VIH) y permitir la consideración de los valores y preferencias de dichas mujeres en el desarrollo de nuevas directrices.Un equipo básico ha creado un grupo de referencia mundial de 14 mujeres que viven con el VIH, las cuales, juntas, han desarrollado una encuesta comunitaria en línea a nivel mundial. La encuesta, que contiene preguntas obligatorias y opcionales, se basó en un enfoque de investigación apreciativa en el cual se han estudiado las experiencias vitales de mujeres que viven con el VIH. También se utilizó el mismo conjunto de preguntas en grupos de discusión dirigidos por el grupo de referencia mundial.El estudio cubrió 945 mujeres (832 en la encuesta y 113 en los grupos) de 94 países de edades comprendidas entre los 15 y los 72 años. Entre las encuestadas que respondieron las preguntas opcionales, el 89,0% (427/480) había temido o experimentado violencia de género, el 56,7% (177/312) había sufrido un embarazo no deseado, el 72,3% (227/314) había recibido asesoría sobre la concepción segura y el 58,8% (489/832) había sufrido problemas de salud mental tras descubrir que son VIH positivas.Las necesidades de salud sexual y reproductiva y los derechos de las mujeres que viven con el VIH son complejos y requieren una mayor respuesta por parte del sector sanitario. La encuesta en línea dio voz a mujeres que viven con el VIH al principio del desarrollo de nuevas directrices mundiales. Aunque en algunos contextos y poblaciones resulta imposible, es necesario adoptar un enfoque similar en el desarrollo de directrices por muchos otros motivos sanitarios.تحديد أولويات الصحة الجنسية والإنجابية لدى النساء المتعايشات مع فيروس نقص المناعة البشري (HIV) والسماح بمراعاة القيم التي تؤمن بها هؤلاء النساء وتفضيلاتهن عند وضع المبادئ التوجيهية الجديدة.تولى فريق أساسي إعداد فريق مرجعي عالمي يتكون من 14 امرأة متعايشة مع فيروس نقص المناعة البشري (HIV) وتعاون الفريقان في إنشاء استطلاع للرأي عبر الإنترنت من خلال مجتمع عالمي. واعتمد استطلاع الرأي – الذي تضمن بعض الأسئلة الإجبارية وأخرى اختيارية – على أسلوب الاستقصاء الإيجابي الذي تم من خلاله البحث في تجارب النساء المتعايشات مع فيروس نقص المناعة البشري (HIV) في مراحل الحياة المختلفة. وتم أيضًا استخدام نفس مجموعة الأسئلة في النقاشات التي أدارها الفريق المرجعي العالمي فيما بين أعضاء مجموعة التركيز.شملت الدراسة 946 امرأة (حيث تضمنت الدراسة 832 منهن بينما شملت مجموعات التركيز 113 منهن) من 94 دولة، وتراوحت أعمارهن بين 15 و72 سنة. واشتملت مجموعة المشاركات اللاتي أجبن على الأسئلة الاختيارية في استطلاع الرأي على 89.0‏% (‏427/480) ممن عانين من الخوف أو العنف ضد المرأة، و56.7‏% (177‏/312) ممن تعرضن للحمل دون تخطيط منهن، و72.3‏% (‏227/314) ممن تلقين النصح بشأن الحمل الآمن و58.8‏‏% (489‏/832) ممن عانين من تدهور الصحة العقلية بعد اكتشافهن حالة الإصابة بفيروس نقص المناعة البشري (HIV).تتسم الاحتياجات والحقوق المتعلقة بالصحة الجنسية والإنجابية التي تستحقها النساء المتعايشات مع فيروس نقص المناعة البشري (HIV) بالتعقيد ويتطلب الأمر استجابة أكثر قوة من جانب قطاع الصحة. وقد وضع استطلاع الرأي عبر الإنترنت أصوات النساء المتعايشات مع فيروس نقص المناعة البشري (HIV) في بداية مراحل وضع المبادئ التوجيهية العالمية الجديدة. ويجدر اتباع أسلوب منهجي مماثل أثناء وضع المبادئ التوجيهية المتعلقة بالعديد من الاعتبارات الصحية الأخرى، رغم عدم إمكانية تطبيق ذلك في ظل بعض الظروف والتركيبات السكانية.旨在确定感染艾滋病毒 (HIV) 女性的性和生殖健康，并在制定新指南过程中考虑此类女性的价值和偏好。.核心团队创建一支由 14 名感染艾滋病毒女性组成的全球参照组，共同开展全球社区在线调查。本次调查采用肯定式询问法，包含一些必答和选答问题，从而调查感染艾滋病毒女性的生命周期体验。同一组问题同样用于全球参照组主导的重点小组讨论。.本次调查涉及 94 个国家中 945 名 15-72 岁的女性（参与调查的 832 名和重点小组的 113 名）。参与选答问题调查的受访者中，89.0% (427/480) 害怕或曾体验过性别暴力；56.7% (177/312) 曾经历了意外怀孕；72.3% (227/314) 获得过安全概念的建议及 58.8% (489/832) 在发现其 HIV 检测结果呈阳性后患上心理问题。.感染艾滋病毒女性的性和生殖健康需求及权利很复杂，需要卫生部门给予更有力的回应。本次在线调查在开始制定全球新指南时，评定感染艾滋病毒女性的声音。尽管这在有些环境和人口不可能实现，但是出于众多其他卫生因素考虑，制定指南时，值得采用类似方法。.Определить приоритеты женщин, живущих с ВИЧ, в сфере сексуального и репродуктивного здоровья и создать возможности для того, чтобы их ценности и предпочтения были учтены при разработке новых руководящих принципов.Основная группа сформировала глобальную референтную группу из 14 женщин, живущих с ВИЧ, вместе с которой был подготовлен интернет-опрос мирового сообщества. В основу опроса, предполагающего как обязательные, так и дополнительные вопросы, был заложен поощрительный подход с целью изучения жизненного опыта женщин, живущих с ВИЧ. Глобальная референтная группа также проводила дискуссии в фокус-группах, в которых использовался тот же набор вопросов.В исследовании приняли участие 945 женщин (832 опрошенных и 113 членов целевых групп) в возрасте от 15 до 72 лет в 94 странах. Среди лиц, ответивших на факультативные вопросы, 89,0% (427 из 480) опасаются гендерного насилия или сталкивались с ним, 56,7% (177 из 312) сталкивались с незапланированной беременностью, 72,3% (227 из 314) консультировались на тему безопасной контрацепции, у 58,8% (489 из 832) развивалось какое-либо психическое расстройство после того, как у них был диагностирован ВИЧ-положительный статус.Потребности и права женщин, живущих с ВИЧ, в сфере сексуального и репродуктивного здоровья представляют собой сложную систему и требуют более значительных мер со стороны системы здравоохранения. Благодаря интернет-опросу голоса женщин, живущих с ВИЧ, получили приоритет при разработке новых руководящих принципов. Аналогичный подход стоит применять при разработке руководящих принципов для решения многих других задач здравоохранения, хотя при определенных условиях и для отдельных групп населения это не представляется возможным.

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.

In March 2016, WHO reviewed evidence to develop global recommendations on the sexual and reproductive health and rights (SRHR) of women living with HIV. Systematic reviews and a global survey of women living with HIV informed the guideline development decision-making process. New recommendations covered abortion, Caesarean section, safe disclosure, and empowerment and self-efficacy interventions. Identification of key research gaps is part of the WHO guidelines development process, but consistent methods to do so are lacking. Our method aimed to ensure consistency and comprised the systematic application of a framework based on GRADE (Grading of Recommendations, Assessment, Development and Evaluation) to the process. The framework incorporates the strength and quality rating of recommendations and the priorities reported by women in the survey to inform research prioritisation. For each gap, we also articulated: (1) the most appropriate and robust study design to answer the question; (2) alternative pragmatic designs if the ideal design is not feasible; and (3) the methodological challenges facing researchers through identifying potential biases. We found 12 research gaps and identified five appropriate study designs to address the related questions: (1) Cross-sectional surveys; (2) Qualitative interview-driven studies; (3) Registries; (4) Randomised controlled trials; and (5) Medical record audit. Methodological challenges included selection, recruitment, misclassification, measurement and contextual biases, and confounding. In conclusion, a framework based on GRADE can provide a systematic approach to identifying research gaps from a WHO guideline. Incorporation of the priorities of women living with HIV into the framework systematically ensures that women living with HIV can shape future policy decisions affecting their lives. Implementation science and participatory research are appropriate over-arching approaches to enhance uptake of interventions and to ensure inclusion of women living with HIV at all stages of the research process.

No abstract available. Keywords: HIV; women living with HIV; sexual and reproductive health; human rights; pregnancy; gender-based violence; anti-retroviral therapy; serodiscordant; serodifferent (Published: 8 March 2017) Citation: Orza L et al. Journal of the International AIDS Society 2017, 20(Suppl 1) :21469 http://www.jiasociety.org/index.php/jias/article/view/21469 | http://dx.doi.org/10.7448/IAS.20.2.21469