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Parallel but connected: Nuances of conducting behavioral and social science research alongside ethically challenging HIV remission trials.

ABSTRACT: Collaborations between clinical investigators and behavioral and social science researchers (BSSR) produce many benefits, but also may generate challenges and complexities. Ongoing relationships between teams may affect the research carried out by the BSSR team and the way they interpret their findings. Here we describe our experiences conducting the HIV Remission ('Cure') Trials Decision-Making Study (DMS), in Thailand; these trials include potentially risky interventions and interruption of standard antiretroviral treatment, with little personal benefit. The DMS is a longitudinal study of the experiences of individuals recruited to such early-phase trials, and conducted alongside these trials. It originated in clinical investigators' concerns about the ability of those recruited to make voluntary and informed decisions about scientifically complex studies, and is led by an independent group of BSSR and ethics researchers. In conducting this study, we experienced three overarching challenges to achieving a successful and dynamic collaboration: managing emerging findings as data were collected alongside clinical trial participation; evolving interconnectedness and shifting partnership boundaries among investigators; and the process of incorporating new research questions. By describing these challenges, we provide experiential evidence on how to manage multidimensional aspects of these collaborations. We describe how our research teams came together as well as the challenges and opportunities we experienced along the way. Our aim is to raise awareness of the scientific, practical, and ethical complexities of establishing and maintaining this kind of broad multidisciplinary collaboration over time. By describing our experiences, we hope to advance an agenda for others who undertake similar partnerships.

SUBMITTER: Henderson GE

PROVIDER: S-EPMC7322675 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Parallel but connected: Nuances of conducting behavioral and social science research alongside ethically challenging HIV remission trials.

Henderson Gail E GE Rennie Stuart S Corneli Amy A Meagher Karen K Cadigan R Jean RJ Kroon Eugène E Ananworanich Jintanat J Peay Holly L HL

Contemporary clinical trials communications 20200616

Collaborations between clinical investigators and behavioral and social science researchers (BSSR) produce many benefits, but also may generate challenges and complexities. Ongoing relationships between teams may affect the research carried out by the BSSR team and the way they interpret their findings. Here we describe our experiences conducting the HIV Remission ('Cure') Trials Decision-Making Study (DMS), in Thailand; these trials include potentially risky interventions and interruption of st ...[more]

PMID: 32617433

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Project description:Ethically challenging situations (ECS) are common in veterinary settings and can lead to moral stress. However, there is no published information about how a global pandemic affects the frequency and types of ECS encountered by veterinary team members. An online mixed methods survey was developed to determine the frequency, stressfulness and types of ECS experienced by veterinarians, animal health technicians and veterinary nurses since the advent of the global COVID-19 pandemic in March 2020. Responses from 540 veterinary team members from 22 countries were analyzed. With the advent of the COVID-19 pandemic, the median frequency of ECS encountered by respondents increased from several times per month to several times per week (Spearman Rank Correlation 0.619, P < 0.0001). The most common ECS (encountered at least several times per week) were: challenging decisions about how to proceed when clients have limited finances (64.4%), conflict between personal well-being and professional role (64.3%), conflict between the interests of clients and the interests of their animals (59.6%). These were followed by challenging decisions about what counts as an essential veterinary service (48.1%); conflict between well-being of family/household members and professional role (46.3%); and challenging decisions about whether to perform non-contact veterinary visits (46.3%). The most stressful ECS (reported to be very or maximally stressful) were: conflicts between the interests of clients and the interests of their animals (50.2%), other (42.9%), conflicts between the interests of my employer and my own interests (42.5%), challenging decisions about how to proceed when clients have limited finances (39.4%), conflict between personal well-being and professional role (38.0%), and conflict between well-being of family/household members and professional role (33.6%). Thematic analysis of free-text responses revealed biosecurity, client financial limitations, animal welfare, working conditions, and client relations as prominent themes. This is, to the best of our knowledge, the first study to describe the impacts of the pandemic on ECS experienced by veterinary teams globally. It identifies an increase in the frequency of ECS associated with the COVID-19 pandemic, and a number of stressors unique to the pandemic. We identified a number of resources and strategies that may help veterinary team members navigate ethical challenges that may emerge in their daily work, as well as in the context of global crises.

Dataset Information

Parallel but connected: Nuances of conducting behavioral and social science research alongside ethically challenging HIV remission trials.

Publications

Parallel but connected: Nuances of conducting behavioral and social science research alongside ethically challenging HIV remission trials.

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