Dr Sarah Bernays

Lecturer, International Public Health
School of Public Health

Telephone 02 9036 7137

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Biographical details

I have over twelve years of experience working in international public health qualitative research, focusing on HIV, harm reduction and adolescent global health. A consistent concern throughout all my research to date has been how individuals, households and communities respond to health adversity, risk and vulnerability and what fosters and sustains resilience and hope. Since 2011 I have been developing and leading a large qualitative research programme focusing on adolescent global health in low and high income countries, with a particular focus on sexual and reproductive health as well as substance use. I moved from the London School of Hygiene and Tropical Medicine (LSHTM) and began working at the University of Sydney in 2017.

Having studied Social Anthropology at Edinburgh University, I began working at the Centre for Research on Drugs and Health Behaviour in 2005 which transferred from Imperial College to LSHTMin 2006. Whilst working I completed my PhD in Medical Sociology in 2011, which examined the process of and influences on coping, hoping and community action amongst people living with HIV/AIDS in Serbia. Prior to working at LSHTM I worked in HIV community work in the UK, East and West Africa and the South West Pacific.

Research interests

My current research focuses on adolescent global health. I run a qualitative longitudinal research programme exploring the experiences of young people growing with HIV and/ or exposed to high HIV risk. The programme includes a number of qualitative studies being run in Uganda, Zimbabwe and South Africa- as well as the United Kingdom and the United States of America.Many of these qualitative research studies are embedded within large international clinical trials and we are developing innovative methods for conducting research with vulnerable families. As such, although my primary expertise is in qualitative methodologies, I tend to work in a large multidisciplinary team and collaborate with clinicians, epidemiologists, ethicists and statisticians to address research questions through multiple methods.My main aim is to develop theoretically informed qualitative evidence, which can have an applied impact on improving adolescent health.

Current research students

Project title Research student
Developing improved methods to facilitate active patient involvement and shared decision making for refugees/asylum seekers in a primary health care setting Pinika PATEL
Validating and developing scales for measuring stigma in TB and MDR-TB patients in Vietnam Lisa REDWOOD

Current projects

The development of aYouth Trials Boardmodel, which aims to develop a simple low-cost model of meaningful engagement and participationof adolescent patient representatives in paediatric clinical trials and research studies. This is being developed and piloted with teams of young people and clinical researchers in UK, Uganda, Zimbabwe and South Africa.

I am the social science lead on the 'Zvandirai trial', which is alarge evaluation of a community peer support programme in Zimbabwe, employing a cluster randomised trial design. This is an exciting and innovative study aiming to assess whether peer support can have a significant affect on individuals' viral load. Our team are reponsible for an extensive qualitative study and the process evaluation components of this trial. This trial is a collaboration between CeSHAAR, AfricAid, LSHTM and USyd.

'Finding your feet', is a qualitative longitudinal study in Kwazulu Natal in South Africa and Kalungu in Uganda running from 2016-2108. It will investigate the sexual health and substance use risks of young people’s mobility and migration. The study will use this participatory research to design a targeted intervention to improve their access to preventive and therapeutic sexual health care.

'ODYSSEY- social science'is a large qualitative study within a clinical trial based in Uganda and Zimbabwe on the experiences of young people living with HIV who are moved onto second line Anti-retroviral Therapy and is aimed at developing more appropriate and effective adherence support for those on second line. This study is being conducted in collaboration with the Clincial TRials Unit (CTU) at University College London (UCL).

I am in the process of completing the following studies.

BREATHER- Examining the acceptability of the Short Cycle Therapy(five days on anti-retroviral treatment and two days off), which is a behavioural and clinical intervention, to improve adherence amongst young people living with HIV (10-24 years old). This is a longitudinal study (starting in 2011) using mixed qualitative methods with approximately 50 participants (repeat in-depth interviews, focus groups and audio diaries) with a cohort of clinical trial participants and their carers in Uganda, UK and the USA. This has been run in collaboration with the CTU at UCL.

Growing up alongside HIV, is also a longitudinal study exploring the experiences of young people and their carers (a sample of 60 12-24 years olds and 30 carers) in three settings of high HIV prevalence in Uganda. This study examines how risks and harm reduction strategies are influenced by poverty, gender, HIV status and substance use.

Selected grants

2017

  • Identifying socio-cultural risks of adolescent pregnancy in East Indonesia; Bernays S; Sydney Southeast Asia Centre/Cluster Research Grant.

2016

  • ODYSSEY: A randomized trial of dolutegravir (DTG)-based antiretroviral therapy vs- standard of care (SOC) in children with HIV infection starting first-line or switching to second-line ART (PENTA 20); Bernays S; Fondazione PENTA/Research Support.

Selected publications

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Journals

  • Bernays, S., Bukenya, D., Thompson, C., Ssembajja, F., Seeley, J. (2018). Being an �adolescent�: The consequences of gendered risks for young people in rural Uganda. Childhood: a global journal of child research, 25(1), 19-33. [More Information]
  • Gutman, T., Hanson, C., Bernays, S., Craig, J., Sinha, A., Dart, A., Eddy, A., Gipson, D., Bockenhauer, D., Yap, H., Ralph, A., Ju, A., James, L., Tong, A., et al (2018). Child and Parental Perspectives on Communication and Decision Making in Pediatric CKD: A Focus Group Study. American Journal of Kidney Diseases, 72(4), 547-559. [More Information]
  • Aggarwal, A., Bernays, S., Payne, H., van der Meulen, J., Davis, C. (2018). Hospital Choice in Cancer Care: A Qualitative Study. Clinical Oncology, 30(7), e67-e73. [More Information]
  • Oliveras, C., Cluver, L., Bernays, S., Armstrong, A. (2018). Nothing About Us Without RIGHTS-Meaningful Engagement of Children and Youth: From Research Prioritization to Clinical Trials, Implementation Science, and Policy. JAIDS: Journal of Acquired Immune Deficiency Syndromes, 78(Suppl 1), S27-S31. [More Information]
  • Kawuma, R., Seeley, J., Mupambireyi, Z., Cowan, F., Bernays, S. (2018). Treatment is not yet necessary": delays in seeking access to HIV treatment in Uganda and Zimbabwe". African Journal of AIDS Research, 17(3), 217-225. [More Information]
  • Namukwaya, S., Paparini, S., Seeley, J., Bernays, S. (2017). "How Do We Start? And How Will They React?" Disclosing to Young People with Perinatally Acquired HIV in Uganda". Frontiers in Public Health, 5, 1-10. [More Information]
  • Mavhu, W., Willis, N., Mufuka, J., Mangenah, C., Mvududu, K., Bernays, S., Mangezi, W., Apollo, T., Araya, R., Weiss, H., et al (2017). Evaluating a multi-component, community-based program to improve adherence and retention in care among adolescents living with HIV in Zimbabwe: Study protocol for a cluster randomized controlled trial. Trials, 18(1), 1-11. [More Information]
  • Bernays, S., Paparini, S., Seeley, J., Kihika, S., Gibb, D., Rhodes, T. (2017). Qualitative study of the BREATHER trial (Short Cycle antiretroviral therapy): is it acceptable to young people living with HIV? BMJ Open, 7(2), 1-7. [More Information]
  • Bernays, S., Paparini, S., Seeley, J., Rhodes, T. (2017). �Not Taking it Will Just be Like a Sin�: Young People Living with HIV and the Stigmatization of Less-Than-Perfect Adherence to Antiretroviral Therapy. Medical Anthropology: Cross Cultural Studies in Health and Illness, 36(5), 485-499. [More Information]
  • Butler, K., Inshaw, J., Ford, D., Bernays, S., Scott, K., Kenny, J., Klein, N., Turkova, A., Harper, L., et al (2016). BREATHER (PENTA 16) short-cycle therapy (SCT) (5 days on/2 days off) in young people with chronic human immunodeficiency virus infection: An open, randomised, parallel-group phase II/III trial. Health Technology Assessment, 20(49), 1-107. [More Information]
  • Bernays, S., Paparini, S., Gibb, D., Seeley, J. (2016). When information does not suffice: young people living with HIV and communication about ART adherence in the clinic. Vulnerable Children and Youth Studies, 11(1), 60-68. [More Information]
  • Sibanda, E., Bernays, S., Weller, I., Hakim, J., Cowan, F. (2015). Manuscript title: Facilitators and barriers to cotrimoxazole prophylaxis among HIV exposed babies: A qualitative study from Harare, Zimbabwe. BMC Public Health, 15(1), 1-8. [More Information]
  • Bernays, S., Seeley, J., Rhodes, T., Mupambireyi, Z. (2015). What am I 'living' with? Growing up with HIV in Uganda and Zimbabwe. Sociology of Health and Illness, 37(2), 270-283. [More Information]
  • Mupambireyi, Z., Bernays, S., Bwakura-Dangarembizi, M., Cowan, F. (2014). "I don't feel shy because I will be among others who are just like me.." The role of support groups for children perinatally infected with HIV in Zimbabwe. Children and Youth Services Review, 45, 106-113. [More Information]
  • Kawuma, R., Bernays, S., Siu, G., Rhodes, T., Seeley, J. (2014). Children will always be children: Exploring perceptions and experiences of HIV-positive children who may not take their treatment and why they may not tell. African Journal of AIDS Research, 13(2), 189-195. [More Information]
  • Bernays, S., Rhodes, T., Jankovic-Terzic, K. (2014). Embodied accounts of HIV and hope: Using audio diaries with interviews. Qualitative Health Research, 24(5), 629-640. [More Information]
  • Wilson, S., Houmoller, K., Bernays, S. (2012). 'Home, and not some house': Young people's sensory construction of family relationships in domestic spaces. Children's Geographies, 10(1), 95-107. [More Information]
  • Rhodes, T., Bivol, S., Scutelniciuc, O., Hunt, N., Bernays, S., Busza, J. (2011). Narrating the social relations of initiating injecting drug use: Transitions in self and society. International Journal of Drug Policy, 22(6), 445-454. [More Information]

2018

  • Bernays, S., Bukenya, D., Thompson, C., Ssembajja, F., Seeley, J. (2018). Being an �adolescent�: The consequences of gendered risks for young people in rural Uganda. Childhood: a global journal of child research, 25(1), 19-33. [More Information]
  • Gutman, T., Hanson, C., Bernays, S., Craig, J., Sinha, A., Dart, A., Eddy, A., Gipson, D., Bockenhauer, D., Yap, H., Ralph, A., Ju, A., James, L., Tong, A., et al (2018). Child and Parental Perspectives on Communication and Decision Making in Pediatric CKD: A Focus Group Study. American Journal of Kidney Diseases, 72(4), 547-559. [More Information]
  • Aggarwal, A., Bernays, S., Payne, H., van der Meulen, J., Davis, C. (2018). Hospital Choice in Cancer Care: A Qualitative Study. Clinical Oncology, 30(7), e67-e73. [More Information]
  • Oliveras, C., Cluver, L., Bernays, S., Armstrong, A. (2018). Nothing About Us Without RIGHTS-Meaningful Engagement of Children and Youth: From Research Prioritization to Clinical Trials, Implementation Science, and Policy. JAIDS: Journal of Acquired Immune Deficiency Syndromes, 78(Suppl 1), S27-S31. [More Information]
  • Kawuma, R., Seeley, J., Mupambireyi, Z., Cowan, F., Bernays, S. (2018). Treatment is not yet necessary": delays in seeking access to HIV treatment in Uganda and Zimbabwe". African Journal of AIDS Research, 17(3), 217-225. [More Information]

2017

  • Namukwaya, S., Paparini, S., Seeley, J., Bernays, S. (2017). "How Do We Start? And How Will They React?" Disclosing to Young People with Perinatally Acquired HIV in Uganda". Frontiers in Public Health, 5, 1-10. [More Information]
  • Mavhu, W., Willis, N., Mufuka, J., Mangenah, C., Mvududu, K., Bernays, S., Mangezi, W., Apollo, T., Araya, R., Weiss, H., et al (2017). Evaluating a multi-component, community-based program to improve adherence and retention in care among adolescents living with HIV in Zimbabwe: Study protocol for a cluster randomized controlled trial. Trials, 18(1), 1-11. [More Information]
  • Bernays, S., Paparini, S., Seeley, J., Kihika, S., Gibb, D., Rhodes, T. (2017). Qualitative study of the BREATHER trial (Short Cycle antiretroviral therapy): is it acceptable to young people living with HIV? BMJ Open, 7(2), 1-7. [More Information]
  • Bernays, S., Paparini, S., Seeley, J., Rhodes, T. (2017). �Not Taking it Will Just be Like a Sin�: Young People Living with HIV and the Stigmatization of Less-Than-Perfect Adherence to Antiretroviral Therapy. Medical Anthropology: Cross Cultural Studies in Health and Illness, 36(5), 485-499. [More Information]

2016

  • Butler, K., Inshaw, J., Ford, D., Bernays, S., Scott, K., Kenny, J., Klein, N., Turkova, A., Harper, L., et al (2016). BREATHER (PENTA 16) short-cycle therapy (SCT) (5 days on/2 days off) in young people with chronic human immunodeficiency virus infection: An open, randomised, parallel-group phase II/III trial. Health Technology Assessment, 20(49), 1-107. [More Information]
  • Bernays, S., Paparini, S., Gibb, D., Seeley, J. (2016). When information does not suffice: young people living with HIV and communication about ART adherence in the clinic. Vulnerable Children and Youth Studies, 11(1), 60-68. [More Information]

2015

  • Sibanda, E., Bernays, S., Weller, I., Hakim, J., Cowan, F. (2015). Manuscript title: Facilitators and barriers to cotrimoxazole prophylaxis among HIV exposed babies: A qualitative study from Harare, Zimbabwe. BMC Public Health, 15(1), 1-8. [More Information]
  • Bernays, S., Seeley, J., Rhodes, T., Mupambireyi, Z. (2015). What am I 'living' with? Growing up with HIV in Uganda and Zimbabwe. Sociology of Health and Illness, 37(2), 270-283. [More Information]

2014

  • Mupambireyi, Z., Bernays, S., Bwakura-Dangarembizi, M., Cowan, F. (2014). "I don't feel shy because I will be among others who are just like me.." The role of support groups for children perinatally infected with HIV in Zimbabwe. Children and Youth Services Review, 45, 106-113. [More Information]
  • Kawuma, R., Bernays, S., Siu, G., Rhodes, T., Seeley, J. (2014). Children will always be children: Exploring perceptions and experiences of HIV-positive children who may not take their treatment and why they may not tell. African Journal of AIDS Research, 13(2), 189-195. [More Information]
  • Bernays, S., Rhodes, T., Jankovic-Terzic, K. (2014). Embodied accounts of HIV and hope: Using audio diaries with interviews. Qualitative Health Research, 24(5), 629-640. [More Information]

2012

  • Wilson, S., Houmoller, K., Bernays, S. (2012). 'Home, and not some house': Young people's sensory construction of family relationships in domestic spaces. Children's Geographies, 10(1), 95-107. [More Information]

2011

  • Rhodes, T., Bivol, S., Scutelniciuc, O., Hunt, N., Bernays, S., Busza, J. (2011). Narrating the social relations of initiating injecting drug use: Transitions in self and society. International Journal of Drug Policy, 22(6), 445-454. [More Information]

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