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Bernay

Datos Biográficos

ID31815
NOMBREBernay
APELLIDOBernay
FIRMABERNAY
AFILIACIONESThe University of Sydney
ORCID0000-0001-7628-8408
VERIFICADOSí
TOTAL DE OBRAS70
TOTAL DE CITAS129
TOTAL COMO AUTOR70
TOTAL COMO EDITOR0
PRIMER AÑO DE PUBLICACIÓN2008
AÑO MÁS RECIENTE DE PUBLICACIÓN2026
ÍNDICE H7
  • Pathways of onward HIV disclosure in relationships among young people living with vertically acquired HIV receiving antiretroviral therapy

    Open Access•Tamlyn Carmin Seunanden, Janet Seeley et al.•ARTICLE•Global Public Health•2026

    For young people living with HIV (YPLHIV) navigating their status since birth, managing onward disclosure of a potentially stigmatising condition in relationships is challenging, and may or may not lead to social support, with implications for wellbeing. In a clinical trial setting in KwaZulu-Natal, South Africa, we investigate how young people living with vertically acquired HIV navigate onward disclosure. Data were from the qualitative componen…

  • ‘They (researchers) don't have to justify their presence, why do we have to justify ours?’

    Open Access•Duy Trinh-Hoang, Bernay et al.•ARTICLE•Social Science & Medicine•2026

    Community Advisory Boards (CABs), adopted from the HIV response, have become the most institutionalised form of community engagement in tuberculosis (TB) research. However, little work has examined the historical-political processes shaping their development or how these dynamics influence community participation in TB research governance. This qualitative study draws on 28 semi-structured interviews with TB advocates, community engagement practi…

  • Principles and priorities for integrated tuberculosis screening and care

    Open Access•Claire Jacqueline Calderwood, Tenzin Kunor et al.•ARTICLE•PLOS Global Public Health•2026

    Tuberculosis predominates in communities with multiple health and socioeconomic vulnerabilities. Tuberculosis diagnosis presents an opportunity for expanded health services to tuberculosis-affected households. We conducted a modified Delphi process to ascertain if and how expanded services should be offered to people with tuberculosis and their households. Purposively invited panellists were identified through professional networks and included r…

  • Biomedical technologies in context

    Open Access•Jayjay John Karumazondo, Bernay et al.•ARTICLE•Global Public Health•2026

    Novel point-of-care tools tailored to contextual needs are critical for improving sexually transmitted infection (STI) management. The genital inflammation test (GIFT) is a point-of-care test under development to detect genital inflammation. A potential use of GIFT is as a screening tool to identify asymptomatic women who may have a sexually transmitted infection (STI) or bacterial vaginosis (BV), followed by confirmatory STI- testing if GIFT-pos…

  • The role of parents and caregivers in motivating adolescents with HIV to participate in a long-acting injectable ART clinical trial in South Africa and Uganda

    Open Access•Tawanda Makusha, Stella Namukwaya et al.•ARTICLE•AIDS Care•2026

    In this paper, we describe the central role of caregivers in shaping adolescent engagement with long-acting injectable antiretroviral therapy (LAI-ART) within the Long-Acting Treatment for Adolescents (LATA) trial conducted in South Africa and Uganda. Adolescents' participation in HIV care is embedded within emotional, moral, and cultural relationships rather than individual decision-making. Drawing on the bioecological model of human development…

  • I can get all the services I want, without fear of being judged ’

    Open Access•Constance R Smackworth-Young, Constancia Vimbayi Mavodza et al.•ARTICLE•Global Public Health•2026

    Sexual and reproductive health (SRH) services often do not appeal to youth, leading to limited engagement and poor outcomes. We co-designed a community-based integrated HIV and SRH service with and for youth (16-24 years) in Zimbabwe (CHIEDZA) and investigated its acceptability. Qualitative data from observations of CHIEDZA services ( n = 58), and in-depth interviews with healthcare providers ( n = 51), mobilisers ( n = 23), and clients ( n = 63)…

  • Acceptability and effectiveness of a study information video in improving the research consent process for youth

    Open Access•Tinashe Mwaturura, Victoria Simms et al.•ARTICLE•BMJ Global Health•2025

    INTRODUCTION: Obtaining informed consent for research includes the use of information sheets, which are often long and may be difficult for participants to understand. We conducted a trial to investigate whether consent procedures using a study information video coupled with electronic consent were non-inferior to standard consent procedures using participant information sheets (PIS) among youth aged 18-24 years in Zimbabwe. METHODS: The trial wa…

  • Living in the shadows

    Open Access•Tamlyn Carmin Seunanden, Nothando Ngwenya et al.•ARTICLE•SSM - Qualitative Research in…•2025

    Young people living with HIV still face persistent HIV stigma and discrimination. • Practising secrecy can create barriers to care and support for youth. • Treatment adherence is inextricably linked to fears about disclosure. • Youth develop different strategies to maintain secrecy over time

  • “It felt like a weight was being taken off of my shoulders”

    Open Access•Nondumiso Dlamini, Siphesihle Hlongwane et al.•ARTICLE•SSM - Mental Health•2025

    In South Africa, many young people relocate from rural to urban areas for education, attending day schools while residing in rented accommodation. Migration exposes them to risk, including alcohol and drug abuse, sexual exploitation and violence. We developed and assessed a support system for young migrants, aged 14-24 in KwaZulu-Natal, South Africa. Five trained peer navigators conducted needs assessments for 283 young internal migrants between …

  • Fighting tuberculosis hand in hand

    Open Access•Nandini Venkatesan, Lena Faust et al.•ARTICLE•PLOS Global Public Health•2025

    Tuberculosis (TB) is an infectious disease closely intertwined with stigma, discrimination, and the social determinants of health. Communities of people affected by TB are experts in their care pathways, but the TB field continues to fall short of meaningfully engaging communities in TB research. This is a missed opportunity to improve the quality, relevance, person-centeredness, positive impact, and sustainability of TB research outputs. We ackn…

  • Cost-effectiveness of Zvandiri, a community-based support intervention to reduce virological failure in adolescents living with HIV in Zimbabwe

    Open Access•Collin Mangenah, Webster Mavhu et al.•ARTICLE•PLOS Global Public Health•2025

    Improving antiretroviral therapy (ART) adherence among adolescents living with HIV (ALHIV) improves outcomes, but with resource implications. We conducted a cost-effectiveness analysis extrapolating the costs and benefits of a community-based peer-support intervention (Zvandiri) among ALHIV in Zimbabwe. We used a de-novo multistate Markov decision-analytic model that simulated Zvandiri lifetime costs and benefits on viral suppression, death rates…

  • “Now that I took TPT, it’s affecting my ART adherence, viral load, even my wellbeing in the community”. Exploring acceptability and experience of Tuberculosis Preventive Treatment among adolescents li…

    Open Access•Joni Lariat, Rufaro Mbundure et al.•ARTICLE•PLOS Global Public Health•2025

    Tuberculosis preventive treatment (TPT) is increasingly offered to people living with HIV in high-burden settings, including adolescents and young people (AYPLHIV). Evidence demonstrates that AYPLHIVs’ HIV treatment engagement is improved by the provision of tailored support. How to effectively adapt this support to accommodate multimorbidity care, such as TPT alongside ART, warrants attention to deliver sustained optimal outcomes. We conducted q…

  • Examining the challenges in sustaining user engagement with a mobile app to enhance multidrug-resistant tuberculosis (MDR-TB) care in Vietnam and its implications for implementing person-centred mHeal…

    Open Access•Dorothy Drabarek, Duy Trinh-Hoang et al.•ARTICLE•PLOS Global Public Health•2025

    Digital health technologies, especially mobile application (mHealth), offer great potential for enhancing person-centred care and managing MDR-TB. The rapid expansion of digital infrastructure in Vietnam presents a valuable opportunity for such interventions. This qualitative study examines user experiences to explain reported reduction in engagement with (i.e. use of) a smartphone app which is being trialed to improve early detection and managem…

  • Learning analysis of health system resilience

    Open Access•Kyaw Myat Thu, Bernay et al.•ARTICLE•Health Policy and Planning•2025

    The emergence of ‘resilience’ as a concept for analysing health systems—especially in low- and middle-income countries—has been trailed by debates on whether ‘resilience’ is a process or an outcome. This debate poses a methodological challenge. What ‘health system resilience’ is interpreted to mean shapes the approach taken to its analysis. To address this methodological challenge, we propose ‘learning’ as a concept versatile enough to navigate t…

  • How and why do young people engage in STI screening, treatment, and partner notification? A qualitative positive deviance study in Zimbabwe

    Open Access•Constance R Smackworth-Young, Joanna Busza et al.•ARTICLE•Global Public Health•2025

    Young people have a high burden of sexually transmitted infections (STIs) but low uptake of and high attrition from services. We adopted a positive deviance approach to explore uptake of STI screening, treatment, and partner notification within a sexual and reproductive health service. We conducted in-depth interviews with young people (aged 16-24 years) who accepted screening, treatment, and partner notification slips ( n = 15), and healthcare p…

  • Examining the resilience of mobile youth in KwaZulu-Natal, South Africa

    Open Access•Nothando Ngwenya, Bernay et al.•ARTICLE•BMC Public Health•2025

    The accessibility and availability of protective resources offered support and provided strength to young people. This fostered resilience for these young people and in a way incorporated aspects of the collectivist communities they live in. Considering resources that are easily available in resource limited settings is important as young people may be more comfortable and confident to access and use. These protective factors may help curb some o…

  • Leaving no one behind? Addressing inequitable HIV outcomes by attending to diversity

    Open Access•Joni Lariat, Webster Mavhu et al.•ARTICLE•PLOS Global Public Health•2024

    Leaving nobody behind in the fight to end the HIV epidemic as a public health threat depends on addressing inequities in optimal HIV outcomes. Consistently overlooked in research, policy and programming are young lesbian, gay, bisexual, transgender, queer/questioning and intersex (LGBTQI+) people who are living with HIV. This study engaged young LGBTQI+ people in Zimbabwe to better understand their experiences of living with HIV and the support t…

  • A conceptualization and psychometric evaluation of positive psychological outcome measures used in adolescents and young adults living with HIV

    Open Access•Jermaine M Dambi, Frances M Cowan et al.•ARTICLE•PLOS Global Public Health•2024

    Introduction Sub-Saharan Africa bears the greatest burden of HIV, with comorbid mental conditions highly prevalent in people living with HIV. It is important to evaluate the mental health of adolescents and young adults living with HIV (AYALHIV) comprehensively by measuring both negative and positive psychological constructs. There has been a proliferation of interest in positive psychological outcome measures, but the evidence of their psychomet…

  • Person-centered and youth-oriented interventions to improve TB Care for adolescents and young adults

    Open Access•Patricia M Waterous, Rudo MS Chingono et al.•ARTICLE•PLOS Global Public Health•2024

    Introduction Globally adolescents and young adults (AYA) with tuberculosis (TB) face unique challenges. Until recently they have received little attention and few tailored interventions exist. To improve TB outcomes in this population, there is a need to implement tailored interventions. However, limited research has been conducted about how to meet the needs of AYA with tuberculosis. In this paper we present the findings of a qualitative study t…

  • “She held my hand and advised me”

    Open Access•Edward Tumwesige, Rachel Kawuma et al.•ARTICLE•PLOS Global Public Health•2024

    We describe how a pilot intervention called "Lending a Hand" was implemented to mitigate some of the risks associated with migration among young recent migrants (14–24 years) in two small towns in south-western Uganda. The design of the intervention was informed by the `protection-risk framework’, with key protection components of the intervention (positive role models/ “good” social network, safer environment, health and social support) affordin…

  • Differentiated care for youth in Zimbabwe

    Open Access•Chido Dziva Chikwari, Katharina Kranzer et al.•ARTICLE•PLOS Global Public Health•2024

    Youth living with HIV are at higher risk than adults of disengaging from HIV care. Differentiated models of care such as community delivery of antiretroviral therapy (ART) may improve treatment outcomes. We investigated outcomes across the HIV cascade among youth accessing HIV services in a community-based setting. This study was nested in a cluster-randomised controlled trial (CHIEDZA: Clinicaltrials.gov, Registration Number: NCT03719521) conduc…

  • When I tried to explain, they shouted back at me!’

    Open Access•Duy Trinh Hoang, Shannon McKinn et al.•ARTICLE•Critical Public Health•2024

    Antimicrobial resistance is a major global and national health challenge, accelerated by 'irrational' antibiotic use. In response, Vietnam has been implementing a public health plan of antimicrobial stewardship since 2013 to reduce antibiotic sales in community pharmacies, although it has had limited effect. Given that private pharmacies are increasingly the entry point to access healthcare, reflective of the inhibited accessibility of primary he…

  • Fertility preservation and protection

    Open Access•Constancia Vimbayi Mavodza, Constance R Smackworth-Young et al.•ARTICLE•Culture Health & Sexuality•2024

    The study explored social and health system influences on young women's decision-making about family planning in a community setting with low uptake. Seventy-two semi-structured interviews were conducted between April 2020 and November 2021, with both young women accessing, and healthcare workers providing, a community-based integrated package of HIV and sexual and reproductive health services (CHIEDZA) in Zimbabwe. Data were thematically analyse…

  • Addressing sociodemographic disparities in Covid-19 vaccine uptake among youth in Zimbabwe

    Open Access•Leyla Sophie Larsson, Chido Dziva Chikwari et al.•ARTICLE•BMJ Global Health•2023

    INTRODUCTION: COVID-19 vaccine acceptance research has mostly originated from high-income countries and reasons why youth may not get vaccinated may differ in low-income settings. Understanding vaccination coverage across different population groups and the sociocultural influences in healthcare delivery is important to inform targeted vaccination campaigns. METHODS: A population-based survey was conducted in 24 communities across three provinces…

  • Making sense of uncertainty

    Open Access•Nothando Ngwenya, Bernay et al.•ARTICLE•Global Public Health•2023

    This study aims to examine the experiences of young migrants and the role of uncertainty in their precarious lives. Drawing on data from individual interviews and a workshop with young migrants aged 16-24 years old in KwaZulu-Natal, South Africa, we use uncertainty as a theoretical lens, to illustrate the ways in which young migrants' experiences provide meaning for them and give them an opportunity to assess, and plan for better opportunities de…

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  • Conducting in-depth interviews with and without voice recorders

    Open Access•Rwamahe Rutakumwa, Joseph Mugisha et al.•ARTICLE•Qualitative Research•2020•Citada por: 29•Referencias: 21

    The use of audio recordings has become a taken-for-granted approach to generating transcripts of in-depth interviewing and group discussions. In this paper we begin by describing circumstances where the use of a recorder is not, or may not be, possible, before sharing our comparative analysis of audio-recorded transcriptions and interview scripts made from notes taken during the interview (by experienced, well-trained interviewers). Our compariso…

  • Parents who use drugs

    Open Access•Tammy Rhodes, Tim Rhodes et al.•ARTICLE•Social Science & Medicine•2010•Citada por: 20•Referencias: 22

  • Medical promise and the recalibration of expectation

    Open Access•Tammy Rhodes, Tim Rhodes et al.•ARTICLE•Social Science & Medicine•2009•Citada por: 13•Referencias: 52

  • Embodied Accounts of HIV and Hope

    Open Access•Bernay, Sarah Bernay et al.•ARTICLE•Qualitative Health Research•2014•Citada por: 12•Referencias: 40

    Capturing the complexity of the experience of chronic illness over time presents significant methodological and ethical challenges. In this article, we present methodological and substantive insights from a longitudinal qualitative study with 20 people living with HIV in Serbia. We used both repeated in-depth interviews and audio diaries to explore the role of hope in coping with and managing HIV. Using thematic longitudinal analysis, we found th…

  • Not Taking it Will Just be Like a Sin

    Open Access•Bernay, Sarah Bernay et al.•ARTICLE•Medical Anthropology•2017•Citada por: 8•Referencias: 33

    Global health priorities are being set to address questions on adherence to HIV antiretroviral therapy in adolescence. Few studies have explored young people's perspectives on the complex host of social and relational challenges they face in dealing with their treatment in secret and their condition in silence. In redressing this, we present findings from a longitudinal qualitative study with young people living with HIV in the UK, Ireland, US, a…

  • What am I 'living' with? Growing up with HIV in Uganda and Zimbabwe

    Open Access•Bernay, Sarah Bernays et al.•ARTICLE•Sociology of Health & Illness•2015•Citada por: 8•Referencias: 12

    As paediatric HIV treatment has become increasingly available across the world, the global perinatally infected cohort is ageing. However, we know surprisingly little about what it is like to grow up with HIV in resource-stretched settings. We draw on findings from a prospective, qualitative study with HIV-positive children, their carers and healthcare workers from four clinics in Uganda and Zimbabwe to examine children's experiences of living wi…

  • Life is so easy on ART, once you accept it

    Open Access•Shona Horter, Zanele Thabede et al.•ARTICLE•Social Science & Medicine•2017•Citada por: 7•Referencias: 45

    The manner in which PLHIV process a positive result can influence their engagement with HIV treatment and care. Thus, there is a need for individually tailored approaches to HTS, including the potential for counselling over multiple sessions if required, supporting status acceptance, and disclosure. This is particularly relevant considering 90-90-90 targets and the need to better support PLHIV to engage with HIV treatment and care following diagn…

  • Home, and not some house’

    Sarah Wilson, Kathrin Houmøller et al.•ARTICLE•Children s Geographies•2012•Citada por: 7•Referencias: 11

    Drawing on recent work highlighting sensory experience of space, this paper argues that understandings of children's and young people's relationships, including difficult family circumstances, may be enriched by taking greater account of their embodied, sensory experience of the domestic spaces in which these relationships are lived. In a study of young people's family life in the context of parental substance misuse, we found that respondents of…

  • A Failed Method? Reflections on Using Audio Diaries in Uganda With Young People Growing Up With HIV in the BREATHER Trial

    Open Access•Bernay, Sara Paparini et al.•ARTICLE•Qualitative Health Research•2019•Citada por: 6•Referencias: 32

    In this article, we present a case study in which we consider our use of the audio diary method with young people (aged 10-24) living with HIV in Uganda in a longitudinal qualitative study conducted in a clinical randomized control trial. Despite initial enthusiasm for the method among participants to capture accounts of participants' experiences outside of the confines of the HIV clinic, the constraints the young people encountered in accessing …

  • Reflections on the Use of Audio Diaries to Access Young People's Lived Experiences of HIV in Zimbabwe

    Open Access•Z Mupambireyi, Bernay•ARTICLE•Qualitative Health Research•2019•Citada por: 4•Referencias: 44

    This methodological article reflects on the contribution audio diaries can make to accessing important, and commonly silenced, dimensions of the lived experience of growing up with HIV and their acceptability to children. Audio diaries were used by 12 young people, aged 11 to 13 years, as part of a longitudinal qualitative study embedded within the Anti-Retroviral Research for Watoto (ARROW) clinical trial. The method provided an alternative mean…

  • Exploring caregiver experiences of stigma in Ghana

    Maria Zuurmond, Janet Seeley et al.•ARTICLE•Disability & Society•2020•Citada por: 3•Referencias: 13

    Families of children with disabilities experience stigma by association with their child. This article examines social and internalised stigma experienced in the family by caregivers who participated in a caregiver programme in Ghana. Stigma is pervasive, and gendered, with most mothers blamed for bringing disability into the home. Emotional distress, isolation and lack of support are common experiences. We argue that the mothers can experience f…

  • When information does not suffice

    Open Access•Bernay, Sara Paparini et al.•ARTICLE•Vulnerable Children and Youth…•2015•Citada por: 3•Referencias: 3

    Despite mounting evidence recommending disclosure of human immunodeficiency virus (HIV) status to young people with perinatally acquired HIV as a central motivating factor for adherence to antiretroviral therapy, many young people continue to experience disclosure as a partial event, rather than a process. Drawing from two longitudinal, interview-based qualitative studies with young people living with HIV (aged 10-24) in five different countries …

  • Hygiene and uncertainty in qualitative accounts of hepatitis C transmission among drug injectors in Serbia

    Open Access•Tammy Rhodes, Tim Rhodes et al.•ARTICLE•Social Science & Medicine•2008•Citada por: 3•Referencias: 43

  • Being young and on the move in South Africa

    Open Access•Bernay, Chloe Lanyon et al.•ARTICLE•Vulnerable Children and Youth…•2020•Citada por: 2•Referencias: 11

    The period between childhood and adulthood has been characterised as a period of ‘waithood’ in which structural conditions may disable young people’s access to basic resources to become independent adults. We consider the specific implications of this experience for newly migrant young people in KwaZulu-Natal, South Africa. We conducted repeat in-depth interviews and participatory workshops over a 12-month period with 38 young people on their exp…

  • Being an 'adolescent

    Open Access•Bernay, Sarah Bernay et al.•ARTICLE•Childhood•2018•Citada por: 2•Referencias: 29

    The behaviour of adolescents is recognised increasingly as having substantial and long-term consequences for their health. We examined the meaning of 'adolescence' in southern Uganda with HIV-positive young people aged 11-24 years. Adolescent girls and boys are described differently in the local language (Luganda). Adolescence is described as a behavioural rather than a life course category and an inherently dangerous one. The practices, risks an…

  • Approaches to delivering appropriate care to engage and meet the complex needs of refugee and asylum seekers in Australian primary healthcare

    Open Access•Pinika Patel, Danielle M Muscat et al.•ARTICLE•Health & Social Care in the…•2022•Citada por: 1•Referencias: 2

    This study aimed to provide insight and learnings from Australian general practitioners in facilitating positive interactions with refugee and asylum seeker patients and the role they play in helping those community members engage with healthcare. We conducted semi-structured individual remote interviews with 12 general practitioners (GPs) who worked in areas with high refugee and migrant populations. Interview transcripts were coded inductively …

  • Dissonance of Choice

    Open Access•Shona Horter, Janet Seeley et al.•ARTICLE•Medical Anthropology•2020•Citada por: 1•Referencias: 47

    Treat-all recommends prompt treatment initiation for those diagnosed HIV positive, requiring adaptations to individuals' behavior and practice. Drawing on data from a longitudinal qualitative study in Eswatini, we examine the choice to initiate treatment when asymptomatic, the dissonance between the biomedical logic surrounding Treat-all and individuals' conceptions of treatment necessity, and the navigation over time of ongoing engagement with c…

  • Trust, disruption and responsibility in accounts of injecting equipment sharing and hepatitis C risk

    Tammy Rhodes, Ana Prodanovic et al.•ARTICLE•Health Risk & Society•2008

    Accounts of health-related risk behaviour are generated in a social context of risk acceptability and moral responsibility. Drawing upon qualitative semi-structured interviews with injecting drug users (IDUs) in Belgrade, Serbia (n = 67) and Podgorica and Bar, Montenegro (n = 32), we explore drug injectors' accounts of sharing injecting equipment, and ‘discriminative’ and ‘exceptional’ sharing specifically, alongside accounts of hepatitis C risk.…

  • Hygiene and uncertainty in qualitative accounts of hepatitis C transmission among drug injectors in Serbia

    Open Access•Tammy Rhodes, Tim Rhodes et al.•ARTICLE•Social Science & Medicine•2008•Citada por: 3•Referencias: 43

  • Experiencing uncertain HIV treatment delivery in a transitional setting

    Bernay, Sarah Bernays et al.•ARTICLE•AIDS Care•2009

    BACKGROUND: Advances in HIV treatment availability mean that the promise of highly active anti-retroviral treatment to turn HIV into a manageable chronic illness is becoming a reality for millions. However the mutability of the virus means that treatment adherence demands are high, and the supply of these life-saving treatments needs to be constant. The onus is generally placed on the individual to adhere, and there is little focus in research or…

  • Medical promise and the recalibration of expectation

    Open Access•Tammy Rhodes, Tim Rhodes et al.•ARTICLE•Social Science & Medicine•2009•Citada por: 13•Referencias: 52

  • “You should be grateful to have medicines”

    Bernay, Sarah Bernays et al.•ARTICLE•AIDS Care•2010

    The expectation that universal HIV treatment access in resource-stretched settings will reduce stigma is a powerful aspiration that has been incorporated into a global rhetoric of hope around the HIV pandemic. Between 2005 and 2007, we undertook qualitative longitudinal research with people living with HIV/AIDS (PLHIV) in Serbia. We draw here upon the thematic analysis of prospective interview accounts of 20 individuals to analyse PLHIV's percept…

  • Parents who use drugs

    Open Access•Tammy Rhodes, Tim Rhodes et al.•ARTICLE•Social Science & Medicine•2010•Citada por: 20•Referencias: 22

  • Narrating the social relations of initiating injecting drug use

    Open Access•Tammy Rhodes, Stela Bivol et al.•ARTICLE•International Journal of Drug…•2011

  • Home, and not some house’

    Sarah Wilson, Kathrin Houmøller et al.•ARTICLE•Children s Geographies•2012•Citada por: 7•Referencias: 11

    Drawing on recent work highlighting sensory experience of space, this paper argues that understandings of children's and young people's relationships, including difficult family circumstances, may be enriched by taking greater account of their embodied, sensory experience of the domestic spaces in which these relationships are lived. In a study of young people's family life in the context of parental substance misuse, we found that respondents of…

  • “I don't feel shy because I will be among others who are just like me…”

    Open Access•Z Mupambireyi, Bernay et al.•ARTICLE•Children and Youth Services Review•2014

    As access to paediatric antiretroviral therapy (ART) continues to improve in sub-Saharan Africa, a new historically specific cohort of HIV-perinatally infected children surviving into adolescent has emerged. Although remarkable successes have been made clinically in keeping this cohort alive and in reasonable health, their social support experiences are still unknown. The research being reported here sought to explore peer social support experien…

  • Children will always be children’

    Rachel Kawuma, Bernay et al.•ARTICLE•African Journal of AIDS Research•2014

    HIV-positive children and young people may face substantial social barriers to maintaining appropriate levels of adherence to antiretroviral therapy (ART) during childhood and adolescence. In this paper, we focus on these children's voices and the challenges they face growing up living with HIV in Uganda. Drawing on retrospective self-reports of 26 children living with HIV, taking ART and attending a clinic in central Uganda, we examine the reaso…

  • Embodied Accounts of HIV and Hope

    Open Access•Bernay, Sarah Bernay et al.•ARTICLE•Qualitative Health Research•2014•Citada por: 12•Referencias: 40

    Capturing the complexity of the experience of chronic illness over time presents significant methodological and ethical challenges. In this article, we present methodological and substantive insights from a longitudinal qualitative study with 20 people living with HIV in Serbia. We used both repeated in-depth interviews and audio diaries to explore the role of hope in coping with and managing HIV. Using thematic longitudinal analysis, we found th…

  • Manuscript title

    Open Access•Euphemia Sibanda, Euphemia L Sibanda et al.•ARTICLE•BMC Public Health•2015

    The study highlights that adherence knowledge and desire alone is insufficient to overcome the familial and structural barriers to maintaining CTX-p. Improving adherence to CTX-p among HEI will require interventions to improve male involvement, reduce HIV stigma in communities and ensure adequate supply of drugs

  • When information does not suffice

    Open Access•Bernay, Sara Paparini et al.•ARTICLE•Vulnerable Children and Youth…•2015•Citada por: 3•Referencias: 3

    Despite mounting evidence recommending disclosure of human immunodeficiency virus (HIV) status to young people with perinatally acquired HIV as a central motivating factor for adherence to antiretroviral therapy, many young people continue to experience disclosure as a partial event, rather than a process. Drawing from two longitudinal, interview-based qualitative studies with young people living with HIV (aged 10-24) in five different countries …

  • What am I 'living' with? Growing up with HIV in Uganda and Zimbabwe

    Open Access•Bernay, Sarah Bernays et al.•ARTICLE•Sociology of Health & Illness•2015•Citada por: 8•Referencias: 12

    As paediatric HIV treatment has become increasingly available across the world, the global perinatally infected cohort is ageing. However, we know surprisingly little about what it is like to grow up with HIV in resource-stretched settings. We draw on findings from a prospective, qualitative study with HIV-positive children, their carers and healthcare workers from four clinics in Uganda and Zimbabwe to examine children's experiences of living wi…

  • Life is so easy on ART, once you accept it

    Open Access•Shona Horter, Zanele Thabede et al.•ARTICLE•Social Science & Medicine•2017•Citada por: 7•Referencias: 45

    The manner in which PLHIV process a positive result can influence their engagement with HIV treatment and care. Thus, there is a need for individually tailored approaches to HTS, including the potential for counselling over multiple sessions if required, supporting status acceptance, and disclosure. This is particularly relevant considering 90-90-90 targets and the need to better support PLHIV to engage with HIV treatment and care following diagn…

  • Not Taking it Will Just be Like a Sin

    Open Access•Bernay, Sarah Bernay et al.•ARTICLE•Medical Anthropology•2017•Citada por: 8•Referencias: 33

    Global health priorities are being set to address questions on adherence to HIV antiretroviral therapy in adolescence. Few studies have explored young people's perspectives on the complex host of social and relational challenges they face in dealing with their treatment in secret and their condition in silence. In redressing this, we present findings from a longitudinal qualitative study with young people living with HIV in the UK, Ireland, US, a…

  • Treatment is not yet necessary”

    Rachel Kawuma, Janet Seeley et al.•ARTICLE•African Journal of AIDS Research•2018

    We examined the logic that individuals use to account for delaying HIV testing and/or initiating HIV treatment. Our qualitative study, situated within the REALITY trial (Reduction of EArly mortaLITY in HIV infected adults and children starting antiretroviral therapy), was conducted in Uganda and Zimbabwe in 2015. Forty-eight participants (different age groups, sex and viral load/WHO disease stage) were included. Each participant had 2 interviews …

  • Being an 'adolescent

    Open Access•Bernay, Sarah Bernay et al.•ARTICLE•Childhood•2018•Citada por: 2•Referencias: 29

    The behaviour of adolescents is recognised increasingly as having substantial and long-term consequences for their health. We examined the meaning of 'adolescence' in southern Uganda with HIV-positive young people aged 11-24 years. Adolescent girls and boys are described differently in the local language (Luganda). Adolescence is described as a behavioural rather than a life course category and an inherently dangerous one. The practices, risks an…

  • I don’t want them to know”

    Open Access•Shona Horter, Bernay et al.•ARTICLE•African Journal of AIDS Research•2019

    Treat-all" programmes aim to improve clinical outcomes and to reduce HIV transmission through regular HIV testing and immediate offer of antiretroviral therapy (ART) for those diagnosed HIV-positive, irrespective of immunological status and symptoms of disease. Global narratives on the benefits of Treat-all anticipate reduced HIV-related stigma and increased "normalisation" of HIV with Treat-all implementation, whereby HIV is remoulded as a manag…

  • A health care labyrinth

    Open Access•Neha Faruqui, Rohina Joshi et al.•ARTICLE•BMC Public Health•2019

    This qualitative study highlights and explores some of the barriers to childhood cancer care in India. Our findings show that referral pathways are intrinsically linked to the treatment experience and there should be better recognition of the financial and emotional challenges faced by the family that occur prior to definitive diagnosis and treatment. This information would help inform various stakeholders and contribute to improved interventions…

  • A Failed Method? Reflections on Using Audio Diaries in Uganda With Young People Growing Up With HIV in the BREATHER Trial

    Open Access•Bernay, Sara Paparini et al.•ARTICLE•Qualitative Health Research•2019•Citada por: 6•Referencias: 32

    In this article, we present a case study in which we consider our use of the audio diary method with young people (aged 10-24) living with HIV in Uganda in a longitudinal qualitative study conducted in a clinical randomized control trial. Despite initial enthusiasm for the method among participants to capture accounts of participants' experiences outside of the confines of the HIV clinic, the constraints the young people encountered in accessing …

  • Reflections on the Use of Audio Diaries to Access Young People's Lived Experiences of HIV in Zimbabwe

    Open Access•Z Mupambireyi, Bernay•ARTICLE•Qualitative Health Research•2019•Citada por: 4•Referencias: 44

    This methodological article reflects on the contribution audio diaries can make to accessing important, and commonly silenced, dimensions of the lived experience of growing up with HIV and their acceptability to children. Audio diaries were used by 12 young people, aged 11 to 13 years, as part of a longitudinal qualitative study embedded within the Anti-Retroviral Research for Watoto (ARROW) clinical trial. The method provided an alternative mean…

  • Illuminating the empowerment journey of caregivers of children with disabilities

    Open Access•Maria Zuurmond, Janet Seeley et al.•ARTICLE•African Journal of Disability•2020

    A richer and more nuanced understanding of caregiver empowerment in the community and family context can inform the wider discourse on disability. Guidelines on working with people with disabilities, and the role of empowerment, should not neglect the pivotal role of caregivers. There are important lessons to be learnt if we want to improve family-centred interventions and transform the lives of children with disabilities

  • Access to care for childhood cancers in India

    Open Access•Neha Faruqui, Bernay et al.•ARTICLE•BMC Public Health•2020

    Although participants acknowledged that accessing childhood cancer care in India is limited by several barriers, perceptions of these barriers varied. Our findings illustrate that health care provider perceptions are shaped by their experiences, interests and standpoints, which are useful towards informing policy for childhood cancers within UHC

  • Being young and on the move in South Africa

    Open Access•Bernay, Chloe Lanyon et al.•ARTICLE•Vulnerable Children and Youth…•2020•Citada por: 2•Referencias: 11

    The period between childhood and adulthood has been characterised as a period of ‘waithood’ in which structural conditions may disable young people’s access to basic resources to become independent adults. We consider the specific implications of this experience for newly migrant young people in KwaZulu-Natal, South Africa. We conducted repeat in-depth interviews and participatory workshops over a 12-month period with 38 young people on their exp…

Medicine (47 obras) · Psychology (41 obras) · Sociology (38 obras) · Qualitative research (37 obras) · HIV/AIDS Research and Interventions (23 obras) · Nursing (22 obras) · Family medicine (21 obras) · Political science (21 obras) · Thematic analysis (21 obras) · Adolescent Sexual and Reproductive Health (20 obras)

Ethnos_APP • Proyecto Open Source • Licencia MIT • Frontend v2.0.0 • Privacidad y Cookies • Documentación de la API: api.ethnos.app/docs • Código de la API: GitHub • DOI: 10.5281/zenodo.17049435 • Código del Frontend: GitHub • DOI: 10.5281/zenodo.17050053 • cruz.rio.br • Expectantes Misericordiae