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15 result(s) for "Jackson-Perry, David"
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Patient and public involvement in HIV research: a mapping review and development of an online evidence map
Introduction Increasing evidence indicates the benefits of patient and public involvement (PPI) in medical research, and PPI is increasingly expected by funders and publishers. We conducted a mapping review of studies reporting examples of PPI implementation in HIV research, and developed an online evidence map to guide HIV researchers. Methods We systematically searched Medline and Embase up until 18 August 2024, including search terms with variations for PPI and HIV. We extracted information from identified studies in duplicate and analysed the data descriptively and qualitatively to describe types of PPI models and reported benefits, challenges, and mitigation strategies. This study was co‐initiated and co‐led by people living with HIV. Results We identified 17 studies reporting PPI in HIV research between 1992 and August 2024. Most PPI examples informed prospective clinical studies, but also qualitative research, questionnaire development, research priority setting and surveys. Ten studies described the number and characteristics of PPI members involved. We observed four PPI models, from a model that solely engaged PPI members for a specific task to a model whereby PPI representatives were integrated into the study team with decision‐making authority. Benefits reported included wider dissemination of research results, better understanding of research material and results, and higher levels of trust and learning between researcher and communities. The most commonly reported challenges were the lack of specific resources for PPI, differing levels of knowledge and expertise, concern about HIV status disclosure, and lack of diversity of the PPI team. Uneven power dynamics, tensions, and differing expectations between stake‐holder groups were also frequently noted. Conclusions This mapping review summarizes published examples of PPI in HIV research for various phases of research. There is a clear need to strengthen the reporting on PPI processes in HIV research, for example by following the Guidance for Reporting Involvement of Patients and the Public (GRIPP) 2 guidelines, and developing guidance on its hands‐on implementation. We embedded PPI from study inception onwards, which potentially pre‐empted some of the challenges reported in the reviewed examples. The resulting online evidence map is a starting point to guide researchers on integrating PPI into their own research.
The Autistic Art of Failure? Unknowing Imperfect Systems of Sexuality and Gender
Research and anecdote dealing in autistic sexual and gender identities present the picture of a group of people who may not conform to (cis)gender binaries, (hetero)sexual norms, or discrete sexual categories of a 'heterosexual, bisexual, or homosexual' nature. Considering that the 'over-representation' of sexual and gender diversity amongst autistic people requires attention, research in the field largely emphasises perceived autistic deficits to explain this phenomenon. In this way, the authenticity of autistic sexual and gender subjectivity is called into question, while both deficit readings of autism and assumptions of a stable, binary reading of sexuality and gender are left untroubled. Leaning on Halberstam's use of failure, I challenge the grounding of autistic sexual and gender diversity in deficit, considering instead autistic experience of gender and sexual identity as valid and authentic. This approach offers epistemological, ethical, and ontological opportunities and turns the research gaze away from supposed autistic deficit, interrogating instead the often unquestioned assumptions of the 'imperfect systems' of sexual and gender norms. I briefly present three alternative and emergent theoretical approaches with the potential to question both what we think we know about autism and what we may be able to know about sexuality and gender through autism. Keywords: Autism, Sexuality, Gender, Imperfect systems, Critical autism studies, Neurodiversity studies, Bayesian theory, Queer theory
Public knowledge and attitudes towards HIV and people with HIV in Switzerland: results of a national survey
Background HIV-stigma impacts negatively on the quality of life of people with HIV (PWH) and can constitute a barrier to HIV prevention services, diagnosis and retention in care. Knowledge that HIV treated with effective antiretroviral therapy is a non-fatal chronic condition and awareness of the U = U (undetectable equals untransmittable) message can mediate stigmatising attitudes. We conducted a survey to assess public knowledge and attitudes regarding HIV and PWH in Switzerland. Methods Members of the public aged ≥ 18 years were randomly selected by a panel institute providing representative population surveys and quota sampling across demographic variables including gender, age, canton of residence and educational level. Participants were invited to complete a questionnaire with closed-ended questions via computer-assisted telephone and/or web interviews. Results A total of 1015 participants (50.7% women, 49.1% men, 0.2% diverse) completed the survey. While 76% stated they felt informed about HIV, misconceptions regarding HIV-acquisition risk were reported, including kissing (22%), insect bites (13%), and shared use of everyday objects (8%). Over half (55%) cited journalistic media as their source of HIV knowledge. Regarding the U = U message, 22% believed it to be true, 22% believed it to be untrue and 56% did not know. Awareness of U = U was higher in younger people and those with higher education. The majority had low (90%) or moderate (9%) HIV-stigma sum scores; higher scores were associated with lower education. In total, 12.6% had heard of pre-exposure prophylaxis (PrEP), of whom 54.7% identified the correct PrEP description. Conclusions Although 76% of participants felt informed about HIV, only 22% agreed with the U = U message. Misconceptions regarding HIV acquisition risk were observed. High HIV-stigma scores were observed among a minority of participants and were associated with lower education. Tailored awareness campaigns could enhance HIV knowledge, disseminate the U = U message and address societal HIV-stigma.
Once HIV Knowledge Is Addressed: HIV-Stigma From the Perspective of Healthcare Professionals Working in HIV Facilities
Stigmatising behaviour towards people with HIV (PWH) by healthcare professionals (HCPs) are often linked to poor HIV knowledge. This qualitative study explores how HIV-related stigma affects daily practice when HIV knowledge is high. HCPs from HIV care facilities in French-speaking Switzerland-administrative staff, nurses, and physicians-were invited to be interviewed by a team trained in qualitative methods using semi-structured guides. Interview transcripts were analysed with IRaMuTeQ software. Ten interviews were completed before data saturation was reached. Three themes emerged: 1) clinic reception, 2) care provision for PWH, and 3) HIV knowledge. Administrative staff described challenges in maintaining patient anonymity. These included not greeting people by name and organising appointment schedules so people from shared social groups never meet at the clinic, thus avoiding HIV-status-sharing by inference. Physicians described underestimating stigma experienced by PWH and cited time constraints during consultations to address this. All groups felt that stigma persists due to limited HIV knowledge among the general public and non-specialist HCPs. Even with good HIV knowledge, HIV-stigma impacts HCP practice and care provision. Efforts to protect anonymity may unintentionally reinforce rather than address HIV-stigma. While improving public and HCP HIV knowledge reduces enacted HIV-stigma, collaborative interventions between HCP sectors and with PWH could help to adapt HCP practices.
Hair salons as a promising space to provide HIV and sexual and reproductive health services for young women in Lesotho: a citizen scientist mixed-methods study
Introduction Adolescent girls and young women in southern Africa are disproportionately affected by HIV and sexual and reproductive health (SRH) challenges. There is a need for more accessible and de-medicalized community spaces to offer HIV/SRH services for this key population. We aimed to assess the acceptability and feasibility of offering HIV/SRH services at hair salons in Lesotho. Methods We used an innovative citizen scientist mixed-methods approach, whereby hair stylists were recruited through social media, completed questionnaires, and recruited women clients aged 15–35 years as respondents. A stepwise verification process including GPS, pictures, and a local mobile payment system ensured data quality. Subsequently, we conducted individual in-depth interviews among 14 stylists and clients, following the rapid thematic analysis framework, supported by natural language processing. Clients and stylists were involved at the design, implementation, and results interpretation stage. Results We recruited 157 hair stylists (median age 29; [interquartile range 25–33]; across all ten districts of Lesotho) and 308 women clients (median age 26 [22–30]). Among stylists, 93.6% were comfortable offering oral HIV self-testing (HIVST), 92.4% pre-exposure prophylaxis (PrEP), and 91.7% post-exposure prophylaxis (PEP). Among clients, 93.5%, 88.3%, and 86.4% felt comfortable receiving the above-mentioned services, respectively. Immediate demand for the three services was 30.8%, 22.1%, and 14.9%. Acceptability and demand were higher for family planning methods and menstrual health products. 90.4% of stylists thought that offering HIV/SRH services would positively impact their business. The majority of clients visit their salon once or twice a month. Salons were more accessible than the nearest health facility in terms of cost and time, but only 21.0% have an additional confidential space. Qualitative analysis confirmed high acceptability of hair salons as an accessible, less judgemental space than clinics, but raised concerns regarding confidentiality and stylists’ roles. Conclusions This study suggests that offering HIV/SRH services in hair salons in Lesotho seems to be largely acceptable and feasible with some addressable barriers, based on survey data. A pilot intervention, guided by this study’s recommendations, is warranted to translate these findings into practice.
Navigating HIV-Related Stigma in Switzerland: A Qualitative Study
Objectives: This study sought to understand how people living with HIV experience, perceive, and navigate stigma in their everyday life and in care settings in an urban French-speaking area in Switzerland. Methods: Semi-structured interviews were carried out with 19 people living with HIV in Lausanne concerning their experience of HIV-related stigma in both everyday life and in healthcare settings. Content analysis was performed to identify main and sub-themes. Results: “Living with HIV” posed little or no difficulty for participants. However, the burden of anticipated and internalized HIV-related stigma played a disproportionately large role in their lives. Participants considered the general population’s low level of knowledge about HIV as problematic in this regard. While participants reported few examples of enacted stigma generally, healthcare environments were sometimes experienced as sites of prejudice and discrimination. However, some healthcare professionals were also sources of information and knowledge, contributing to participants’ “journeys of self-acceptance.” Conclusion: Even in an urban environment in a country with ready access to healthcare and education, HIV-related stigma remains a concern for people living with HIV.
Offer of a menu of different nicotine substitute products to REduce Tobacco Use iN pEople living with HIV (RETUNE): a protocol for a pragmatic randomized trial within the Swiss HIV Cohort Study
Background Among people living with HIV, there has been a shift of focus from HIV-related health issues to cardiovascular diseases and cancer. For both, tobacco smoking is a major but insufficiently addressed etiological factor. Evidence from randomized trials suggests that nicotine substitute products such as e-cigarettes and nicotine patches can reduce tobacco smoking and its associated health burden. However, most previous smoking cessation trials primarily included people who are motivated to quit smoking and focused on testing a single nicotine substitute product. The effectiveness of offering a menu of nicotine substitute products to tobacco smokers regardless of their willingness to quit smoking (“opt-out” approach) is unknown. Methods Reduce tobacco use in people living with HIV in Switzerland (RETUNE, NCT06789692) is a pragmatic, 1:1 randomized, multicenter, superiority clinical trial using the Trials within Cohorts (TwiCs) design within the Swiss HIV Cohort Study. RETUNE assesses the effectiveness of offering a menu of different nicotine substitute products, namely electronic cigarettes, nicotine pouches, and nicotine patches, versus usual care. Cohort participants are eligible if they smoke more than one tobacco cigarette per day, do not use any of the substitute products, and have signed the randomization consent following the TwiCs design. Participants randomized to the intervention may choose any of the offered substitutes to be used free of charge for 6 months or decline the offer. Overall, we plan to recruit 972 participants. The primary outcome is tobacco abstinence at 6 months measured as participant-reported past 7-day prevalence abstinence. The primary outcome will be assessed in the intention-to-treat set using a logistic regression model adjusted for region, men having sex with men, current drug users, and number of cigarettes per day at baseline. Secondary outcomes are long-term smoking cessation rates and tobacco-associated health outcomes. Discussion RETUNE started recruitment in February 2025 and is currently ongoing. RETUNE using the TwiCs design will clarify the effectiveness of a preference-based opt-out smoking cessation intervention among people living with HIV. Trial registration Clinicaltrials.gov NCT06789692. Registered on January 17th, 2025. The manuscript is aligned with the registry. https://clinicaltrials.gov/study/NCT06789692?cond=NCT06789692&rank=1
Not Doing it Properly? (Re)producing and Resisting Knowledge Through Narratives of Autistic Sexualities
Autism is conceptualized in much scientific literature as being associated with restricted and repetitive interests, characterized by an ‘empathy deficit’, and negatively impacting social communication. Meanwhile, ‘good and healthy’ sexuality is largely considered to be a social endeavor: asexuality and sexualities defined by acts rather than by partner gender—for example kink or BDSM—are broadly pathologized. Perhaps, therefore, first-hand autistic experiences of sexuality challenge existing assumptions about ‘good and healthy’ sexualities within couplehood. As a theoretical starting point to explore this potential, we revisit Gayle Rubin’s notion of ‘sex within the charmed circle’ to ask whether autistic sexuality can ever truly ‘fit’ within this (neurotypically defined) virtuous sexual arena. We further consider the ways in which the intersection of autism and sexuality is understood and experienced in first-hand autistic accounts of sexuality within a specific context, through analysis of a Swedish online discussion forum in which autistic people discuss sexuality. In doing so we seek both to better understand autistic sexual experience, and to track and deconstruct potentially restrictive assumptions of (non-autistic) couple sexuality more generally. We also consider ways in which assumptions of deficit concerning both non-normative sexualities and autism may have a deleterious effect on autistic people and on research more broadly, limiting theoretical and conceptual understandings of autism and autistic ways of (sexual) being by a default comparison to sexual and neurological norms.
Implementing a randomization consent to enable Trials within Cohorts in the Swiss HIV Cohort Study – A mixed-methods study
Trials within Cohorts (TwiCs) is a promising design to make randomized trials more efficient. Cohort participants are asked for consent to be randomized into future low-risk interventions tested within the cohort. To enable TwiCs in the Swiss HIV Cohort Study, we added this “randomization consent” to the protocol and approached cohort participants subsequently for written consent. This study describes the TwiCs implementation process. We used a mixed methods design to evaluate the implementation process. We used cohort data to characterize participants accepting and declining randomization consent. We conducted a cross-sectional survey with cohort physicians to gather opinions and experiences regarding the TwiCs design. We did semistructured interviews with involved stakeholders (physicians, research personnel, participants, and ethics committee members) to get insights about attitudes, barriers, and facilitators implementing the randomization consent. In addition, we performed observations in cohort visits where the randomization consent was offered. Between July 2024 and July 2025, among 5297 cohort participants approached, 3067 (57.9%) accepted and 734 (13.8%) declined the randomization consent. In 1496 (28.2%) cases the decision was postponed to the next visit. Male sex, younger age, higher education, being consulted by a steady physician for at least three visits, and shorter cohort participation time showed higher acceptance rates. Interviewed participants cited fear of additional effort and a lack of interest in research as reasons for declining consent. The overall perception of TwiCs among cohort physicians and research personnel was positive. They recognized the potential to simplify the conduct of trials, especially to test low-risk interventions. Ethical concerns on the TwiCs consent procedure were rare. However, an explicit randomization consent was considered necessary by members of ethical committees while several physicians and participants felt positive about randomizing without explicit consent. The roll-out of the randomization consent was facilitated by well-trained, motivated personnel, and seamless integration into clinical routine. Main barriers for physicians in the consenting process were language barriers, participant difficulty understanding the concept, and time constraints due to tight consultation schedules. The implementation of the TwiCs design, including the roll-out of a randomization consent in an existing, large-scale cohort, is feasible. The acceptance rate among participants was high. •Over 3000 participants signed a randomization consent in the Swiss HIV Cohort Study.•The acceptance rate of the randomization consent among participants was high.•This enables Trials within Cohorts (TwiCs) in the SHCS.•The perception of TwiCs among physicians and research personnel was positive.•Main barriers: language barrier, time barrier, complexity of TwiCs.