Human immunodeficiency virus and trans women: a literature review

Trans women are a key, yet under-researched, population in the HIV epidemic. However, there remains a paucity of data on the health and wellbeing of trans women at risk of, or living with, HIV in the United Kingdom. This article provides a narrative review of key empirical research into HIV among trans women. In an effort to explore individual and social factors in relation to HIV in this population, we outline key tenets of identity process theory from social psychology and the concept of structural violence from medical anthropology. We focus on published studies around the following themes: (1) epidemiological data, (2) syndemic factors (3) barriers to social support, (4) HIV and gender transitioning, and (5) access to and engagement with health care. We identify lacunae and thus call for United Kingdom-based research in the following areas: (1) the prevalence and incidence of HIV in trans women, (2) the impact of syndemic factors on HIV risk and acquisition in trans women, (3) the nature of social support for coping with syndemic factors, (4) the interface of gender transitioning and HIV, and (5) barriers to accessing HIV prevention and care services. There is great scope (and urgency) for research into HIV among trans women, especially in the United Kingdom, to reduce incidence in this group, to enhance engagement in HIV care across the care continuum, and to improve the health and wellbeing of those living with HIV. A tentative model for HIV prevention and care is presented in this article

Infant feeding as a transgressive practice in the context of HIV in the UK: A qualitative interview study

HIV transmission risk via breastfeeding is greatly reduced by antiretroviral therapy but is not zero. Current UK guidelines recommend exclusive formula feeding; however, women can breastfeed if they meet certain criteria. We examine the narrative accounts of mothers with HIV (pregnant or recently given birth) who navigated divergent cultural and national policy norms regarding infant feeding. Mothers with HIV, the majority of whom in the UK are of Black African ethnicity, face a complex decision regarding infant feeding, which has implications for their sense of identity, belonging and citizenship. While the UK has one of the lowest breastfeeding rates globally, breastfeeding is normalised across African and Asian cultures. However, HIV remains stigmatised and formula feeding could signal one's HIV-positive status. Our participants made difficult trade-offs to mitigate the variety of threats they faced, and both feeding options (breast or formula) felt transgressive, with immense hazards involved for these intersectionally-disadvantaged women

Infant feeding as a transgressive practice in the context of HIV in the UK: a qualitative interview study

HIV transmission risk via breastfeeding is greatly reduced by antiretroviral therapy but is not zero. Current UK guidelines recommend exclusive formula feeding; however, women can breastfeed if they meet certain criteria. We examine the narrative accounts of mothers with HIV (pregnant or recently given birth) who navigated divergent cultural and national policy norms regarding infant feeding. Mothers with HIV, the majority of whom in the UK are of Black African ethnicity, face a complex decision regarding infant feeding, which has implications for their sense of identity, belonging and citizenship. While the UK has one of the lowest breastfeeding rates globally, breastfeeding is normalised across African and Asian cultures. However, HIV remains stigmatised and formula feeding could signal one's HIV-positive status. Our participants made difficult trade-offs to mitigate the variety of threats they faced, and both feeding options (breast or formula) felt transgressive, with immense hazards involved for these intersectionally-disadvantaged women

a survey of healthcare providers across the WHO European region

FundingThis work was supported by European AIDS Clinical Society.Women living with HIV are reaching older age and experiencing menopause and age-related comorbidities. Data suggest that women living with HIV experience earlier menopause and more menopausal symptoms and age-related comorbidities compared to women without HIV. However, there are no guidelines on the screening for and management of age-related comorbidities and events in women living with HIV. Moreover, little is known about provision of care to this population across Europe. We surveyed 121 HIV healthcare providers in 25 World Health Organization European countries to ascertain screening practices for, and management of, menopause, psychosocial and sexual well-being and age-related comorbidities in women with HIV. Most respondents screened for diabetes, cardiovascular disease (CVD) risk factors and poor mental health at least annually. Low bone mineral density (BMD) was regularly checked but less than once a year. Fewer regularly screened for sexual well-being and intimate partner violence. Menstrual pattern and menopausal symptoms in women aged 45–54 were assessed by 67% and 59% of respondents. 44% stated that they were not confident assessing menopausal status and/or symptoms. CVD, diabetes, low BMD and poor mental health were managed mainly within HIV clinics, whereas menopause care was mainly provided by gynaecology or primary care. Most respondents stated a need for HIV and menopause guidelines. In conclusion, we found that whilst metabolic risk factors and poor mental health are regularly screened for, psychosocial and sexual well-being and menopausal symptoms could be improved. This highlights the need for international recommendations and clinician training to ensure the health of this population.publishersversionepub_ahead_of_prin

Understanding the attitudes and experiences of people living with potentially stigmatised long-term health conditions with respect to collecting and sharing health and lifestyle data

Background: The emerging landscape of patient-generated data (PGData) provides an opportunity to collect large quantities of information that can be used to develop our understanding of different health conditions and potentially improve the quality of life for those living with long-term health condition (LTHCs). If the potential benefits of PGData are to be realised, we need a better understanding of the psychological barriers and facilitators to the collection and beneficial sharing of health and lifestyle data. Due to the understudied role that stigma plays in sharing PGData, we explore the attitudes and experiences of those living with potentially stigmatised LTHCs with respect to collecting and sharing health and lifestyle data. Methods: This study used semi-structured interviews and a card sorting task to explore the attitudes and experiences of people living with potentially stigmatised LTHCs. Fourteen adult participants who reported having a range of conditions were recruited in England. Template analysis was used to analyse interview transcripts and descriptive statistics were used for the card sorting task. Results: The findings present four overarching themes: Preferences for collecting health and lifestyle data, Importance of anonymity, Expected use of data, and Sources of emotional support. Participants illustrated a general willingness to share health and lifestyle data; however, there were some notable differences in sharing experiences, varying both by information type and recipient group. Overall, participants did not identify health-related stigma as a barrier to collecting or sharing their personal health and lifestyle data. Conclusions: We outline a number of preferences that participants feel would encourage them to collect and share data more readily, which may be considered when developing data sharing tools for the future

Loss to follow-up after pregnancy among Sub-Saharan Africa-born women living with HIV in England, Wales and Northern Ireland:results from a large national cohort

BACKGROUND: Little is known about retention in human immunodeficiency virus (HIV) care in HIV-positive women after pregnancy in the United Kingdom. We explored the association between loss to follow-up (LTFU) in the year after pregnancy, maternal place of birth and duration of UK residence, in HIV-positive women in England, Wales, and Northern Ireland. METHODS: We analyzed combined data from 2 national data sets: the National Study of HIV in Pregnancy and Childhood; and the Survey of Prevalent HIV Infections Diagnosed, including pregnancies in 2000 to 2009 in women with diagnosed HIV. Logistic regression models were fitted with robust standard errors to estimate adjusted odds ratios (AOR). RESULTS: Overall, 902 of 7211 (12.5%) women did not access HIV care in the year after pregnancy. Factors associated with LTFU included younger age, last CD4 in pregnancy of 350 cells/μL or greater and detectable HIV viral load at the end of pregnancy (all P < 0.001). On multivariable analysis, LTFU was more likely in sub-Saharan Africa-born (SSA-born) women than white UK-born women (AOR, 2.17; 95% confidence interval, 1.50–3.14; P < 0.001). The SSA-born women who had migrated to the UK during pregnancy were 3 times more likely than white UK-born women to be lost to follow-up (AOR, 3.19; 95% confidence interval, 1.94–3.23; P < 0.001). CONCLUSIONS: One in 8 HIV-positive women in England, Wales, and Northern Ireland did not return for HIV care in the year after pregnancy, with SSA-born women, especially those who migrated to the United Kingdom during pregnancy, at increased risk. Although emigration is a possible explanatory factor, disengagement from care may also play a role

Setting the research agenda: involving parents in research on children who are HIV-free

INTRODUCTION: There is growing interest in health, developmental and survival outcomes of children who are born HIV-free to women living with HIV (children born HIV-free). To date, the research agenda has been largely determined by researchers, funders and policy makers, with limited involvement of parents, who are key stakeholders. Researchers at UCL Great Ormond Street Institute of Child Health in partnership with community-based organisation 4M Network of Mentor Mothers conducted two workshops with parents in March 2022 to establish research priorities for children born HIV-free, and key considerations for methodological approaches both to research and engagement with the affected communities. DISCUSSION: When exploring research on children born HIV-free, we consider the following: what aspects of current research are aligned with women and parents' priorities, what is missing and what approaches would be preferred. A holistic approach to research on children born HIV-free should be prioritised, focussing on a breadth of outcomes and how they intersect. Secondary use of existing data sources should be maximised to facilitate this, with a view of monitoring the long-term effects of fetal antiretroviral drug exposure alongside other key health and developmental outcomes. Involving and engaging with parents, and children where possible, must be at the heart of research design to maximise relevance and impact of findings for the affected communities. Potential barriers to engaging with individuals who were children born HIV-free include parental disclosure and individuals not identifying as a child born HIV-free to a mother living with HIV. Stigma-free language must be incorporated into the vocabulary of researchers and other stakeholders, avoiding reference to exposure; we propose the term "children born HIV-free." CONCLUSIONS: Mothers and parents living with HIV should be involved in research about their children born HIV-free and are key in identifying research priorities so that findings may translate into an impact on their children's health and wellbeing. Meaningful involvement of women living with HIV through trusted community partners is an effective mechanism by which to elicit views on research about their children

Comorbidities and menopause assessment in women living with HIV: a survey of healthcare providers across the WHO European region

Women living with HIV are reaching older age and experiencing menopause and age-related comorbidities. Data suggest that women living with HIV experience earlier menopause and more menopausal symptoms and age-related comorbidities compared to women without HIV. However, there are no guidelines on the screening for and management of age-related comorbidities and events in women living with HIV. Moreover, little is known about provision of care to this population across Europe. We surveyed 121 HIV healthcare providers in 25 World Health Organization European countries to ascertain screening practices for, and management of, menopause, psychosocial and sexual well-being and age-related comorbidities in women with HIV. Most respondents screened for diabetes, cardiovascular disease (CVD) risk factors and poor mental health at least annually. Low bone mineral density (BMD) was regularly checked but less than once a year. Fewer regularly screened for sexual well-being and intimate partner violence. Menstrual pattern and menopausal symptoms in women aged 45-54 were assessed by 67% and 59% of respondents. 44% stated that they were not confident assessing menopausal status and/or symptoms. CVD, diabetes, low BMD and poor mental health were managed mainly within HIV clinics, whereas menopause care was mainly provided by gynaecology or primary care. Most respondents stated a need for HIV and menopause guidelines. In conclusion, we found that whilst metabolic risk factors and poor mental health are regularly screened for, psychosocial and sexual well-being and menopausal symptoms could be improved. This highlights the need for international recommendations and clinician training to ensure the health of this population

Underfunded and fragmented — a storm is brewing for sexual and reproductive health services

The Guttmacher–Lancet Commission’s report on Sexual and Reproductive Health and Rights for All coincides with raised awareness of this topic as a result of global movements such as #metoo. However, weak political leadership, increasing fragmentation of services, and sustained underfunding pose a threat to sexual and reproductive health globally

Understanding the Barriers and Facilitators to Sharing Patient-Generated Health Data Using Digital Technology for People Living with Long-Term Health Conditions: A Narrative Review

Using digital technology to share patient-generated health data has the potential to improve the self-management of multiple long-term health conditions. Sharing these data can allow patients to receive additional support from healthcare professionals and peer communities, as well as enhance their understanding of their own health. A deeper understanding of the concerns raised by those living with long-term health conditions when considering whether to share health data via digital technology may help to facilitate effective data sharing practices in the future. The aim of this review is to identify whether trust, identity, privacy and security concerns present barriers to the successful sharing of patient-generated data using digital technology by those living with long-term health conditions. We also address the impact of stigma on concerns surrounding sharing health data with others. Searches of CINAHL, PsychInfo and Web of Knowledge were conducted in December 2019 and again in October 2020 producing 2,581 results. An iterative review process resulted in a final dataset of 23 peer-reviewed articles. A thorough analysis of the selected articles found that issues surrounding trust, identity, privacy and security clearly present barriers to the sharing of patient-generated data across multiple sharing contexts. The presence of enacted stigma also acts as a barrier to sharing across multiple settings. We found that the majority of literature focuses on clinical settings with relatively little attention being given to sharing with third parties. Finally, we suggest the need for more solution-based research to overcome the discussed barriers to sharing