ABSTRACT
In this chapter, I examine the vaccination debate, by revisiting what I refer to as the epistemics of rights and duties in relation to the debate. In alluding to this, I show, in the first part of the chapter, that the state has the right, which I infer from its obligation to ensure an enabling environment for individuals to achieve their good, to mandate vaccination. I ground my argument on the 'social contract' between the state and the citizen. My position in this regard is however nuanced by what may be referred to as the 'default condition,' which is that the state may exercise this right on the grounds that there are no conditions it has brought about that may cause political distrust on the part of the citizenry. In the second part of the chapter, I show that governments' handling of information and information-sharing regarding the COVID-19 health pandemic as a public good, particularly at its onset, creates occasions for political distrust. And as I result, I argue that governments lost some of its contractual right to mandate vaccination. The analysis in this chapter draws on my lived experience in Nigeria. © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023. All rights reserved.
ABSTRACT
Male reproductive health depends on many factors, including whether infectious diseases occur in the reproductive system. Such changes may be reflected in the semen analysis. In the past three years, the number of individuals who fell ill with COVID-19 caused by SARS-CoV-2 has been growing worldwide, including in Russia. This infection causes dysfunction and a negative effect on many organs and systems, including reproductive organs, which is reflected in abnormal semen parameters. Despite the high efficacy and small number of side effects found in clinical trials, only 56% of the population in the US and 49% in the Russian Federation reported wanting the vaccine. One of the reasons for distrust of vaccines is the potential negative impact on fertility. A literature review is devoted to the study of the effect of SARS-CoV-2 and vaccination on male reproductive health. The search was carried out using Medline, PubMed, and EMBASE databases.Copyright © 2023 Authors. All rights reserved.
ABSTRACT
Background: The Housing Collaborative project at Eastern Virginia Medical School has developed a method of adapting public health guidance from public housing communities, which face tremendous health challenges in cardiometabolic health, cancer, and other major health conditions. In this paper, we describe how academic and community partners in the Housing Collaborative came together to do this work with a focus on COVID-19 testing in the context of the emerging pandemic. Methods: The academic team used virtual community engagement methods to interact with the Housing Collaborative Community Advisory Board (HCCAB) and a separate cohort of research participants (N = 102) recruited into a study of distrust in COVID-19 guidance. We conducted a series of 44 focus group interviews with participants on related topics. Results from these interviews were discussed with the HCCAB. We used the collaborative intervention planning framework to inform adaptation of public health guidance on COVID-19 testing delivered in low-income housing settings by including all relevant perspectives. Results: Participants reported several important barriers to COVID-19 testing related to distrust in the tests and those administering them. Distrust in housing authorities and how they might misuse positive test results seemed to further undermine decision making about COVID-19 testing. Pain associated with testing was also a concern. To address these concerns, a peer-led testing intervention was proposed by the Housing Collaborative. A second round of focus group interviews was then conducted, in which participants reported their approval of the proposed intervention. Conclusion: Although the COVID-19 pandemic was not our initial focus, we were able to identify a number of barriers to COVID-19 testing in low-income housing settings that can be addressed with adapted public health guidance. We struck a balance between community input and scientific rigor and obtained high quality, honest feedback to inform evidence-based recommendations to guide decisions about health.
Subject(s)
COVID-19 , Housing , Humans , COVID-19/diagnosis , COVID-19/epidemiology , COVID-19/prevention & control , COVID-19 Testing , Poverty , Public HealthABSTRACT
Despite higher rates of SARS-CoV-2 infections and mortality, vaccine uptake in Black and Latinx populations remained disproportionately low, including in the Bronx, New York. In response, we used the Bridging Research, Accurate Information, and Dialogue (BRAID) model to elicit community members' COViD-19 vaccine-related perspectives and informational needs and inform strategies to improve vaccine acceptance. We conducted a longitudinal qualitative study over 13 months (May 2021-June 2022), with 25 community experts from the Bronx including community health workers, and representatives from community-based organizations. Each expert participated in 1-5 of the 12 conversation circles conducted via Zoom. Clinicians and scientists, attended circles to provide additional information in content areas identified by the experts. Inductive thematic analysis was used to analyze the conversations. Five overarching themes, related to trust, emerged: (1) disparate and unjust treatment from institutions; (2) the impact of rapidly changing COVID messages in the lay press (a different story every day); (3) influencers of vaccine intention; (4) strategies to build community trust; and (5) what matters to community experts [us]. Our findings highlighted the influence of factors, such as health communication, on trust (or lack thereof) and vaccine intention. They also reinforce that creating safe spaces for dialogue and listening and responding to community concerns in real time are effective trust-building strategies. The BRAID model fostered open discussion about the factors that influence vaccine uptake and empowered participants to share accurate information with their community. Our experience suggests that the model can be adapted to address many public health issues.
ABSTRACT
Contact tracing applications (CTAs) have been presented as important tools in the fight against the Covid-19 pandemic. In France, the government developed the ‘StopCovid' CTA which later became ‘TousAntiCovid.' This research aims at understanding the determinants of the use of this CTA and of the intention to integrate the health pass. To do that, this study focuses on the perceived value of its use based on the privacy calculus theory. A quantitative study was conducted using a sample of 779 French people. The results show that the use of the CTA and the intention to integrate the health pass are influenced, as hypothesized, by perceived value, distrust towards the government, and personal innovativeness. Perceived value is positively influenced by social and individual benefits, as well as social influence, and, to a lesser extent, negatively influenced by social risks but not by individual risks.
ABSTRACT
Background: People with HIV (PWH) have a higher risk of COVID-19 morbidity and mortality. SARS-CoV-2 vaccination is highly effective in preventing severe COVID-19, although medical mistrust may contribute to vaccine hesitancy among PWH. Method(s): PWH from 8 sites in the Centers for AIDS Research Network of Integrated Clinical Systems (CNICS) completed the clinical assessment of patient-reported outcomes including a vaccine hesitancy instrument as part of routine care from 2/21-4/22. Participants were defined as vaccine hesitant if they had not yet received the SARS-CoV-2 vaccine and would probably or definitely not receive it. We assessed factors associated with SARS-CoV-2 vaccine hesitancy using logistic regression, and adjusted for demographics, unsuppressed viral load >200 copies/mL, calendar month and time on ART. Result(s): Overall, 3,278 PWH with a median age of 55 responded;19% were female sex at birth;93% were virally suppressed. At the time of survey, 27% reported they had not received the SARS-CoV-2 vaccine, of whom 27% (n=242;7% overall) reported vaccine hesitancy. Of these 242, 82% expressed concerns about vaccine efficacy;86% about side effects;38% reported distrust of healthcare, 53% reported concerns about vaccine contents (i.e. trackers, live virus);and 24% did not perceive risk from COVID-19. Factors associated with vaccine hesitancy included female sex (Adjusted Odds Ratio [AOR] 2.0;95% Confidence Interval (CI): 1.5-2.8;Table), Black vs. White race (AOR 1.8;95% CI: 1.3-2.5), age< 30 years (AOR 2.8;95% CI: 1.5-5.2), South/Midwest vs. Northeast region (AOR 1.7;95% CI: 1.2-2.4), years on ART (0.8;0.7-0.9) and unsuppressed viral load (AOR 2.2;95% CI: 1.4-3.5). Hesitancy decreased over time (AOR 0.9 per month;95% CI: 0.8-0.9). Vaccine side effects were the primary concern for women;vaccine contents for Black PWH and those who were unsuppressed;and lack of perceived COVID-19 risk for youth. Conclusion(s): Vaccine hesitancy was reported by approximately 7% of a U.S. multi-site cohort of PWH, and it was more prevalent among Black PWH, women, youth, those with unsuppressed viral loads, and residents of the South/ Midwest. The association between virologic non-suppression and vaccine hesitancy highlights the intertwined challenge of medical mistrust for both HIV and COVID-19. Although vaccine hesitancy decreased over time, renewed efforts will be needed to address concerns of PWH about the COVID-19 vaccine, given the ongoing need for revaccination with the evolution of the pandemic.
ABSTRACT
The summarizing up the semantic and systemic results should comprise the next phase to provide insights into COVID-19 pandemic and consider it as a modern epidemic and humanitarian crisis on global level. The journal <<Infection and Immunity>> regularly and consistently present the results of ethically viewed legal framework of the pandemic and the administrative regulation of the public health system. Analysis and ethical assessment of the situation covers a wide range of issues, including the provision and operational adaptation of the regulatory framework, the problems of medical care, the processes and conditions for developing diagnostics, treatment and prevention, as well as all aspects related to the organization and implementing vaccination. Three previous ethical comments presented in 2020-2022 during the pandemic were devoted to these issues. Current study within the framework of the <<fourth ethical commentary>> follows directly from the data obtained while evaluating and analysing real-world experience on vaccination in the context of a regional cluster - the CIS member states, presented in the previous article. The perceived need and obvious significance of the study is to highlight objective factors of vulnerability in the vaccination during the COVID-19 pandemic and identify the response spectrum to form trust/or distrust to vaccination in various sectors of society, depending on a set of social and moral factors, including those coupled to a religious denomination. The data obtained are of paramount importance to find the moral ways to support and stabilize a responsible attitude with the aim to protect moral, social and physical health in emergency situations.Copyright © 2023 Saint Petersburg Pasteur Institute. All rights reserved.
ABSTRACT
Male reproductive health depends on many factors, including whether infectious diseases occur in the reproductive system. Such changes may be reflected in the semen analysis. In the past three years, the number of individuals who fell ill with COVID-19 caused by SARS-CoV-2 has been growing worldwide, including in Russia. This infection causes dysfunction and a negative effect on many organs and systems, including reproductive organs, which is reflected in abnormal semen parameters. Despite the high efficacy and small number of side effects found in clinical trials, only 56% of the population in the US and 49% in the Russian Federation reported wanting the vaccine. One of the reasons for distrust of vaccines is the potential negative impact on fertility. A literature review is devoted to the study of the effect of SARS-CoV-2 and vaccination on male reproductive health. The search was carried out using Medline, PubMed, and EMBASE databases.Copyright © 2023 Authors. All rights reserved.
ABSTRACT
One takes one's word that p when a source vouches for p and one accepts the word of that source. If the source is reliable in this case, p is acceptable. The reliability of the source is a measure of its plausibility. If a source has the relevant competence, credibility, authority, that word is acceptable. Likewise, the word may be acceptable if accompanied by a cogent argument, but presumption may be misplaced. One may recognize a presumption for a statement when such recognition is not justified, the positive version of the fallacy. One may refuse to recognize a presumption for a statement when there really is a presumption for the statement, the negative version of the fallacy. The essay proceeds to explore various dimensions of when it is justified to take a source's word for a claim, and when it is justified to reject a claim from a source. The discussion ranges over considerations of sexism and race, cultural differences, and the relationship of presumptions to fallacies. Also considered is the role of trust in taking someone's word and the factors involved in trusting someone.
ABSTRACT
During crises like COVID-19, individuals are inundated with conflicting and time-sensitive information that drives a need for rapid assessment of the trustworthiness and reliability of information sources and platforms. This parallels evolutions in information infrastructures, ranging from social media to government data platforms. Distinct from current literature, which presumes a static relationship between the presence or absence of trust and people's behaviors, our mixed-methods research focuses on situated trust, or trust that is shaped by people's information-seeking and assessment practices through emerging information platforms (e.g., social media, crowdsourced systems, COVID data platforms). Our findings characterize the shifts in trustee (what/who people trust) from information on social media to the social media platform(s), how distrust manifests skepticism in issues of data discrepancy, the insufficient presentation of uncertainty, and how this trust and distrust shift over time. We highlight the deep challenges in existing information infrastructures that influence trust and distrust formation.
ABSTRACT
PurposeCOVID-19 affects the peer-to-peer (P2P) accommodation industry. With regard to prospect theory, individuals' negative emotions, such as institutional distrust, are easily evoked and impede consumption intention in an environment of permeating uncertainty and risks. While existing research indicates the negative effects of institutional distrust, scant research has explored its antecedents and intervention mechanisms. This study thus aims to unveil the influencing factors and explore mitigating mechanisms of customers' institutional distrust of P2P accommodations.Design/methodology/approachOnline reviews data were used to identify the underlying critical issues. The authors developed a model to depict how institutional distrust is formed under the boundary condition of subjective norm by the results. The model was verified using a questionnaire survey. Finally, in-depth semi-structured interviews were conducted to ensure its robustness.FindingsThe external environment and internal platform effectiveness are two critical aspects affecting institutional distrust of P2P accommodations. The external environment influences institutional distrust through perceived threat, explaining the formation mechanism of customers' institutional distrust through customers' internal psychology. Furthermore, the authors found subjective norm moderating the effect of perceived threat on customers' institutional distrust.Research limitations/implicationsThis is one of the first studies, to the best of the authors' knowledge, to explore institutional distrust of P2P accommodations after COVID-19. The finding contributes to studies on P2P accommodation by uncovering the contingent role of subjective norm in influencing customers' institutional distrust.Originality/valueThis is a pioneering study that explores the antecedents and mitigating mechanisms of institutional distrust of P2P accommodations during the new normal of COVID-19.
ABSTRACT
Background: Vaccines against coronavirus disease-19 (COVID-19) are important to control the current pandemic. Misinformation, lack of awareness, and beliefs about vaccines can cause hesitations about vaccines and affect the rate of vaccination. We aimed to reveal the vaccination rates against COVID-19 (vaccine type and dose), and the reasons for not being vaccinated in patients admitted to the immunology and allergy outpatient clinic. In addition, we aimed to find out whether allergic reactions were observed in vaccinated patients. Method(s): The history of COVID-19 and vaccination of patients admitted to the Immunology and Allergy Outpatient Clinic between December 2021 and February 2022 were evaluated retrospectively. Result(s): In our study, which included 451 patients, the median age of the patients was 35 (range 18-82), and 61.2% were women. 16.9% of the patients admitted to the immunology and allergy outpatient clinic were never vaccinated, while the rate of those who did not receive two doses of vaccine was 26.6%. The top three reasons for not being vaccinated were fear of allergies, fear of adverse effects, and distrust of the vaccine, respectively. Unvaccinated patients were younger, which is statistically significant. Vaccination rate was found to be lower in drug allergy and immunodeficiencies compared to other disease groups. The rate of vaccination of at least 2 doses in the allergic rhinitis group was significantly higher than those without allergic rhinitis. Conclusion(s): Fear of allergies, fear of advers effects, and distrust of the vaccine reduce the rate of vaccination. Understanding the causes of vaccine hesitations and increasing the vaccination rate by organizing public health campaigns is an important point in the control of the pandemic. Despite being rare, allergic reactions can be observed with COVID-19 vaccines. Therefore, immunologists and allergists play an important role in the COVID-19 vaccine program.
ABSTRACT
By emphasizing the Terror Management Theory, this study investigated the participants' perceptions, psychological experiences, coping strategies, and behavioral changes during the pandemic in Bangladesh in two phases: first, after the pandemic's immediate outbreak, and second, after 3 months of the pandemic (daily infection cases were very high). To perform the research, an empirical-phenomenological method was used. Findings indicate that at the first stage, participants' death phobia was extremely high, and poor medical facilities, religious struggles, imprudent behavior of others, concerns for family members, and a tendency to compare the socioeconomic status with other developed countries affected participants' emotions severely. Later on, participants' perceptions of the disease changed significantly. This study highlights that people's behavior varies depending on whether the thought of death is in the center or on the periphery of their attention. In both stages, religious faith and rituals played a crucial role in coping with the crisis situation.
ABSTRACT
This article examines vaccination and vaccine hesitancy during the COVID-19 pandemic by focusing on the role of altruism and distrust in government across different job sectors. Using the Household Pulse Survey, a nationally representative and near real-time dataset administered by the United States Census Bureau, our findings suggest that there is a clear difference in vaccine take-up and vaccine hesitancy across job sectors. We find that government and nonprofit employees are more likely to receive vaccines and, if not vaccinated yet, are less vaccine-hesitant than private-sector employees. Additionally, motivations behind vaccine hesitancy, particularly altruism and distrust in government, varied according to one's sector affiliation. Government and nonprofit employees, compared to private employees, were more likely to be vaccine hesitant for altruistic motivations. Differences in government distrust across sectors bore unexpected results, as we found no difference between government and private employees, while nonprofit employees were less likely to be vaccine hesitant due to government distrust. We discuss the implications and contributions of this article and suggest future agenda for COVID-19 research and sector comparison literature.
ABSTRACT
According to the Italian Code of Medical Deontology, mutual trust and mutual respect for values and rights are the care relationship foundation. To establish reciprocal trust and respect, the communication between care providers and patients must be skilled and appropriate, and the time devoted to communication must be considered time of care. But in Italy, in the last decades costs containment policy in the organizations of the National Health Service critically shortened the time available for care. Today, doctors and other healthcare professionals literally do not have the time to establish appropriate care relationships, and this causes a widespread and increasing distrust of patients and their families in the care system. During COVID-19 pandemic also vaccine hesitancy, defined by experts as a delay in acceptance or refusal of vaccination despite availability of vaccination services, was mainly due to a lack of confidence in care system and in scientific research. Slow Medicine ETS, an Italian proactive movement of healthcare professionals and citizens, following the example of the initiative 'Building Trust' recently activated by the ABIM Foundation in the USA, launched a national initiative aimed to promote and plan concrete actions to restore and consolidate people's trust in healthcare professionals and organizations, in researchers, in scientific and rational approach to knowledge and in its use for the improvement of health and quality of life. Slow Medicine ETS, still successfully leading and supporting the 'Choosing Wisely Italy' project, will be engaged in assembling the national network of the new project 'Building Trust Italy'.Copyright © the Author(s), 2022.
ABSTRACT
Introduction: At the end of 2020, several vaccines against covid-19 have been validated by the World Health Organization in order to stop this pandemic. However, a growing number of people, including health care workers (HCWs), express reluctance to be vaccinated against covid-19. Aim(s): To determine the causes of reluctance towards the covid-19 vaccine expressed by health care personnel. Method(s): This was a descriptive and cross-sectional study that interested the HCWs of the Charles Nicolle Hospital of Tunisia reluctant to the anti-covid-19 vaccination during the period from October 25, 2021, to January 31, 2021. The causes of renunciation were studied through a pre-established questionnaire. Result(s): Our population consisted of 112 HCWs. The average age was 41.1 +/-10.2 years old. Females were predominant (66.1%). The average professional seniority was 12.4 +/- 11.3 years. Our population consisted mainly of blue-collar workers (29.1% of cases) followed by senior technicians (26.4% of cases) and nurses (24.5% of cases). The HCWs belonged to the medical services in 45% of the cases. Previous infection with SARS -Cov2 virus was noted in 55.4% of the HCWs. The reasons for renunciation were: the potential adverse effects that the vaccine could cause in the long term (59.8%), the speed of clinical trials is a source of concern (30.4%), and at the use of new vaccine technologies, particularly mRNA vaccines remains a factor of distrust (26.8%). Conclusion(s): It is imperative to strengthen the confidence of the HCWs towards the different vaccines against covid19 while insisting on the benefit-risk balance which always remains in favor of vaccination.
ABSTRACT
Introduction: Online group psychotherapy has only recently been developed in Italy due to the health emergency. Due to the restrictions, group therapists have dealt the transition from face-to-face to online setting, learning from experience how to manage the clinical relationship mediated by the screen. In particular, the management of the setting, group interactions and the therapeutic style. Method(s):The present study is based on a survey that involved 26 group therapists who agreed to participate and answered the survey during the first three months after the shifting to online practice. The sample was mainly composed of women (67%), with an average age of 55 years and professional experience between 20 and 40 years;the work area was equally distributed between north, central and southern Italy;the participants' career orientation was almost exclusively psychodynamic / psychoanalytic (86%) and the groups were analytic in the private setting, with two exceptions in a public service. The survey was structured in two sections: the first relating to individual online therapy was organized through 4 main areas: (i) the changes in the use of online intervention due to Covid-19;(ii) the virtual set (tting);(iii) the perception of the therapeutic relationship mediated by the screen;(iv) corporeality in the online therapeutic relationship. The second section dealt specifically with online group psychotherapy and explored questions such as the comparison between face-toface and online groups in terms of efficacy, therapeutic factors, interplay and interactions among group participants and challenges in leading online group. Responses were provided on a likert scale, but in many questions the therapist were required to motivate and argue their thought. Data were analyzed through mixed method, occurrence and percentage of the responses were counted and calcu- lated, while through a qualitative analysis the contents were extrapolated from the answers provided by the therapists. Result(s): Results show that the therapists have experienced with difficulty the management of the online setting and finding their most challenging task in three areas: interpersonal relationship, the loss of feelings, and the therapeutic presence. More in general, results gave us an overall picture of how therapists perceived and represent themselves the online group psychotherapy. In their view group online are characterized by the absence of the body (or rather of the body communication), the modification of the perception of emotions, the loss of directionality and reciprocity of the gaze, the alteration of temporality in the online and the changes with respect to the therapeutic presence of the clinician during the session. Moreover, therapists reported the necessity to spend greater resources in online setting, resource in terms of attention, concentration, fatigue, and also to deal with one's own and others' sources of environmental distraction. In line with these perceptions, the majority of therapists reported the need to be more active and more directive in leading the group, as well as the need to maintain control and manage silence, the latter was in effect considered more difficult to manage in the online mode. Conclusion(s): Overall, the results of our survey suggest that there has been a good ability to adapt to the online setting. At the same time, the prevailing representation is that online therapy has quite different characteristics. It also seems that forcing the use of the online setting has diminished the distrust towards this type of therapy. Of course, the small number of therapists involved in the survey does not allow the responses to be considered as representative and limits the possibility of generalizing the Results: It is also important to consider the results in light of the particular situation caused by the pandemic, this leads to the recognition that many issues relating to online therapy are still "open questions" and must therefore be the subject of new research and reflections. Further research, already un ertaken in recent months, will also have to deepen the patients' experience, with respect to their experiences, the differences they found between the two settings, the functioning of the online group, their perception of the main processes and therapeutic factors.
ABSTRACT
The 2020-2021 period, characterised by the COVID19 pandemic and consequently by social closures and distancing, had a strong psychological impact on the population and threatened the development of evolutionary processes. One of the most vulnerable age ranges with the greatest intra- and interpersonal implications lies between 18 and 29 years old, the so-called emerging adulthood: during the pandemic, the demand for psychological help from young people was overwhelming. For this phase, group psychotherapy appears to be particularly indicated (Gatto Rotondo et al.2020), and for patients facing evolutionary crossings (Budman and Gurman, 1988;Di Blasi, Di Falco, 2011) such as the transition from adolescence to adulthood, the most suitable device is the fixed term one. Furthermore, although more slowly than in presence groups, the development of cohesion appears to be possible in online groups (Weinberg, 2021), a modality that has supported psychological care work in particular in recent years. The aim of the present study is to qualitatively compare the therapeutic process of two psychoanalytically oriented groups of young adults: one in presence with 6 patients, in a private psychoteraphist office, and the other one in online mode, with 8 patients, at the Psychological Assistance for Students-Psychological Consultation (SAP-CP) at the University Center for Psychological Clinical Services of the University of Padova. Both groups are fixed-term, weekly, the first of 41 sessions, the second of 29 sessions, and are co-led (the online one was also attended by an observer). The patients' problems are related to disorders in the affective and relational sphere (e.g. in the family, with the partner, with peers). The comparison starts from the data collected with the Group Questionnaire - GQ (Krogel et al., 2013), an instrument that assesses the therapeutic relationship in the group through a three-factor model: Positive Bonding (sense of belonging or attraction that a member has towards the group, the members, and the leader(s), which creates a positive atmosphere and allows members to feel truly understood and appreciated), Working Relationship (ability of the group to agree and work effectively towards therapy goals) and Negative Relationship (lack of trust, sincerity and understanding, friction and distance that may exist in the group, between members, or with the leader). The instrument was administered at three points: at the start of the group, in the middle and at the end of the process. The reflections on the development of the therapeutic process examined in particular Positive Bonding and Negative Relationship and were enriched by the clinical material consisting of session transcripts. In the in-presence group, the Positive Bonding and Negative Relationship scores are in the normal range and increase in the therapeutic process, suggesting that the sense of belonging or attraction that a member has towards the group, if it remains within certain limits, can favour the explication and circulation of experiences of friction and distance between members and towards the conductors, maintaining trust towards the device and the group's ability to work on shared therapeutic objectives. In the online group, Positive Bonding scores are higher than the cutoff, Negative Relationship scores are lower, suggesting a greater sense of belonging and bonding, and a lower sense of distrust and distance between members and the leader, but at the same time a greater difficulty in circulating experiences of friction and distance. The results show that both group therapies with young adults, inpresence and online, can be effective, and the analysis of Positive Bonding and Negative Relationship suggests that the two devices have certain characteristics that differentiate them and that should be kept in mind when conducting group psychotherapy and interpreting the therapeutic process. However, analysis of the therapeutic process of other groups, both in-presence and online, is suggested for stronger evidence.
ABSTRACT
Purpose: Adolescents/young adults (AYA) from racial/ethnic communities have high rates of HIV but little access to biomedical research, due to complexities around consent. Requirement of parental consent for participation in biomedical research is protective and strongly supported by parents, but in biomedical HIV prevention, minors are less likely to participate in research because of concerns about disclosure. Public deliberation (PD) is a process to obtain community input on complex policy issues, by bringing together AYA and adults, who have an investment in an issue, but with potentially opposing views, to provide education, clarify values, and facilitate discussion, reflection, and recommendations. To inform institutional review boards, institutions, and investigators, PDs were held with the goal of obtaining community perspectives and recommendations on minor consent for biomedical HIV prevention research from communities affected by youth HIV. Due to COVID-19 pandemic restrictions, we used an online format and conducted PDs across four evenings. We then conducted post-deliberation interviews to describe participants' experiences in the online PD. Methods: As part of an IRB approved PD, we conducted semi-structured interviews with youth and adult community members who had participated in the deliberations, held in Tampa and Baltimore. The interviews, which were conducted over Zoom, queried deliberants about their experiences voicing their perspectives, their comfort level, their degree of trust in the deliberation process, and ideas for how to better engage future deliberants. Interviews were audio-recorded, transcribed, and field notes were generated. Data were analyzed using thematic analysis. Results: We interviewed 13 community members: seven from Tampa (African American=3, White=3, Latinax=1;AYA=2) and six from Baltimore (African American=6;AYA=1). Facilitators: Deliberants from both communities indicated that personal connections were important for building consensus and understanding. When other participants shared personal stories and perspectives, deliberants were more receptive to hearing and accepting new ideas and opinions that differed from their own. Challenges: Tampa deliberants reported that they preferred an online deliberation because it helped overcome practical barriers to in-person deliberations, such as access to transportation and long commutes. Baltimore participants indicated they would have preferred in-person interactions to build trust, increase comfort, and augment engagement. Participants from both communities discussed distrust in research due to the historical legacy of racism in research and medicine. Due to this legacy, they reported that distrust influenced their views of minor-self-consent and impacted the deliberation process around building consensus. For example, concerns about coercion of minor human subjects influenced their views on minor consent. Recommendations: Participants recommend that strategies be developed to increase engagement in the virtual space. These strategies include use of (a) breakout sessions to increase comfort with sharing;(b) personal storytelling and reviewing group agreements to increase trust, (c) early polling activities to ensure engagement, (d) and asking adults to provide space for youth to voice their perspectives. Conclusions: While online public deliberation on sensitive topics with a vulnerable population is possible, it is important for researchers to focus on providing a safe environment, to acknowledge historical racism in research, and to use methods to maximally engage participants. Sources of Support: PCORI.