Between delivering chronic care and answering patients' burdens: Understanding HIV specialist nurses' experiences in the age of treatment.

AIM(S): To understand the experiences of HIV nurses in the context of ambivalence between biomedical treatment advancements and the continuing burden for people living with HIV and negative representations of HIV. DESIGN: An interpretative phenomenological study was conducted using in-depth interviews. METHODS: Twenty-one interviews with nurses were conducted between November 2021 and March 2022. A thematic analysis was performed. RESULTS: Six themes related to the nurses' experiences emerged. Despite effective treatment for most people with HIV, nurses identify patient populations that require additional care. Nurses are flexible in making extra appointments to accommodate complex issues in these patients. Nurses develop a unique relationship with their patients based on trust and empathy, linked to patient's experiences with stigma and discrimination for people with HIV. Nurses perceive their tasks as becoming increasingly complex. There is explicit awareness about the changes in HIV care from acute to chronic care and how this affects nurses' tasks. Nurses continue to differentiate HIV from other chronic conditions. CONCLUSION: Biomedical advancements change the organization of HIV care while public health concerns remain and patient population has particular needs due to negative social representations of HIV. Nurses navigate these issues in their everyday care. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: A potential re-evaluation of the role of nurses in providing chronic HIV care. IMPACT: Our study addresses the roles of HIV nurses as care is shifting towards chronic care models. The unique relationship between nurses and patients is key in understanding the importance of nurses in the care trajectory. These findings impact the institutional role of nurses in HIV treatment centres and the institutional organization of HIV care. REPORT METHOD: The COREQ guideline was used. PATIENT OR PUBLIC CONTRIBUTION: Amsterdam UMC (AMC) staff, the national organization of HIV Nurses and patient organizations contributed to the study design.

The role of self-care interventions on men's health-seeking behaviours to advance their sexual and reproductive health and rights.

BACKGROUND: Self-care interventions are influencing people's access to, expectation and understanding of healthcare beyond formal health delivery systems. In doing so, self-care interventions could potentially improve health-seeking behaviours. While many men proactively engage in maintaining and promoting their health, the focus on men's health comes from the recognition, at least partially, that male socialization and social norms can induce men and boys to have a lower engagement in institutionalized public health entities and systems around their sexual and reproductive health and rights, that could impact negatively on themselves, their partners and children. MAIN TEXT: A research agenda could consider the ways that public health messaging and information on self care practices for sexual and reproductive health and rights could be tailored to reflect men's lived realities and experiences. Three examples of evidence-based self-care interventions related to sexual and reproductive health and rights that men can, and many do, engage in are briefly discussed: condom use, HIV self-testing and use of telemedicine and digital platforms for sexual health. We apply four core elements that contribute to health, including men's health (people-centred approaches, quality health systems, a safe and supportive enabling environment, and behaviour-change communication) to each intervention where further research can inform normative guidance. CONCLUSION: Engaging men and boys and facilitating their participation in self care can be an important policy intervention to advance global sexual and reproductive health and rights goals. The longstanding model of men neglecting or even sabotaging their wellbeing needs to be replaced by healthier lifestyles, which requires understanding how factors related to social support, social norms, power, academic performance or employability conditions, among others, influence men's engagement with health services and with their own self care practices.

Optimising HIV care using information obtained from PROMs: protocol for an observational study.

INTRODUCTION: Successful antiviral therapy has transformed HIV infection into a chronic condition, where optimising quality of life (QoL) has become essential for successful lifelong treatment. Patient-reported outcome measures (PROMs) can signal potential physical and mental health problems related to QoL. This study aims to determine whether PROMs in routine clinical care improve quality of care as experienced by people with HIV (PWH). METHODS AND ANALYSIS: We report the protocol of a multicentre longitudinal cohort studying PWH at Amsterdam University Medical Centres in the Netherlands. PROMs are offered annually to patients via the patient portal of the electronic health record. Domains include anxiety, depression, fatigue, sleep disturbances, social isolation, physical functioning, stigma, post-traumatic stress disorder, adherence, drug and alcohol use and screening questions for sexual health and issues related to finances, housing and migration status. Our intervention comprises (1) patients' completion of PROMs, (2) discussion of PROMs scores during annual consultations and (3) documentation of follow-up actions in an individualised care plan, if indicated. The primary endpoint will be patient-experienced quality of care, measured by the Patient Assessment of Chronic Illness Care, Short Form (PACIC-S). Patients will provide measurements at baseline, year 1 and year 2. We will explore change over time in PACIC-S and PROMs scores and examine the sociodemographical and HIV-specific characteristics of subgroups of patients who participated in all or only part of the intervention to ascertain whether benefit has been achieved from our intervention in all subgroups. ETHICS AND DISSEMINATION: Patients provide consent for the analysis of data collected as part of routine clinical care to the AIDS Therapy Evaluation in the Netherlands study (ATHENA) cohort through mechanisms described in Boender et al. Additional ethical approval for the analysis of these data is not required under the ATHENA cohort protocol. The results will be presented at national and international academic meetings and submitted to peer-reviewed journals for publication.

'It [HIV] is part of the relationship': exploring communication among HIV-serodiscordant couples in South Africa and Tanzania.

In many sub-Saharan African countries, a high proportion of people living with HIV are in long-term serodiscordant relationships. This paper explores how HIV serodiscordance shapes communication among couples in long-term HIV-serodiscordant relationships. A total of 36 couples were purposively recruited through healthcare providers and civil society organisations in South Africa (26) and Tanzania (10). We explored couples' portrayal of living in a serodiscordant relationship by conducting semi-structured interviews with each partner separately, followed by a joint interview with both partners. Using an adaptation of Persson's model on sero-silence and sero-sharing, we categorised coping style as 'sero-silent' if partners reported that they did not talk much with each other about issues related to their serodiscordant status or as 'sero-sharing' if they portrayed HIV as being an issue which they dealt with together. Some couples exhibited features of both coping styles and, at times, partners differed in their ways of coping.

Sexual relations and childbearing decisions of HIV-discordant couples: an exploratory study in South Africa and Tanzania.

This article reports on the influence of HIV on sexual relations and childbearing decisions of 36 HIV-discordant couples, 26 in South Africa and 10 in Tanzania, recruited into an exploratory study through hospital antiretroviral treatment clinics and civil society organisations working with people living with HIV. Self-administered questionnaires were used to obtain social and demographic information, while couples' sexual relations and childbearing decisions were explored through in-depth, semi-structured individual and couple interviews. The majority of the HIV-positive partners were women, who were on antiretroviral treatment. Almost one-third of South African respondents and half of those in Tanzania reported experiences of tension related to HIV-discordance, while more than half of the South Africans and almost three-quarters of the Tanzanians reported that intimacy had been affected by their discordant status. Those without children were more likely to desire children (17/23) than those who already had children (16/44), although this desire was influenced by fear of HIV transmission to the negative partner and medical professional advice. The study points to the need for targeted information for HIV discordant couples, as well as couple counselling and support services.

Prioritising gender, equity, and human rights in a GRADE-based framework to inform future research on self care for sexual and reproductive health and rights.

Introduction: In January 2019, the WHO reviewed evidence to develop global recommendations on self-care interventions for sexual and reproductive health and rights (SRHR). Identification of research gaps is part of the WHO guidelines development process, but reliable methods to do so are currently lacking with gender, equity and human rights (GER) infrequently prioritised. Methods: We expanded a prior framework based on Grading of Evidence, Assessment, Development and Evaluation (GRADE) to include GER. The revised framework is applied systematically during the formulation of research questions and comprises: (1) assessment of the GRADE strength and quality rating of recommendations; (2) mandatory inclusion of research questions identified from a global stakeholder survey; and (3) selection of the GER standards and principles most relevant to the question through discussion and consensus. For each question, we articulated: (1) the most appropriate and robust study design; (2) an alternative pragmatic design if the ideal design was not feasible; and (3) the methodological challenges facing researchers through identifying potential biases. Results: We identified 39 research questions, 7 overarching research approaches and 13 discrete feasible study designs. Availability and accessibility were most frequently identified as the GER standards and principles to consider when planning studies, followed by privacy and confidentiality. Selection and detection bias were the primary methodological challenges across mixed methods, quantitative and qualitative studies. A lack of generalisability potentially limits the use of study results with non-participation in research potentially highest in more vulnerable populations. Conclusion: A framework based on GRADE that includes stakeholders' values and identification of core GER standards and principles provides a practical, systematic approach to identifying research questions from a WHO guideline. Clear guidance for future studies will contribute to an anticipated 'living guidelines' approach within WHO. Foregrounding GER as a separate component of the framework is innovative but further elaboration to operationalise appropriate indicators for SRHR self-care interventions is required.

Sexual and reproductive health services and HIV testing: perspectives and experiences of women and men living with HIV and AIDS.

All over the world HIV has been stigmatised, making it difficult for people living with HIV to access testing, treatment, care and counselling or even to act on a diagnosis or get advice and treatment, for fear of being judged. Prejudice in society has also often been reflected and reproduced by health care providers. A human rights approach, which positively incorporates sexual and reproductive rights, rather than a restricted medical view, is therefore essential for the achievement of true partnerships between health care providers and service users. This paper is about the experiences of HIV positive women and men in sexual and reproductive health services and HIV testing. It provides guidance not only on how things could and should be done but also on how they should not be done. It outlines the sexual and reproductive rights positive people consider crucial and gives examples of how these are being violated. It presents perceptions and implications of HIV testing and how health services can support people after a positive diagnosis. It analyses the importance of confidentiality, continuity of care, knowledge and information, and the role of support groups and home-based care. It calls on sexual and reproductive health services to address issues of stigma and discrimination when offering and carrying out HIV testing and counselling, and in providing treatment, care and support.