RESUMO
INTRODUCTION: Kazakhstan has one of the fastest-growing HIV epidemics in the world, with increasing rates among adolescents and young adults (AYA). Innovative strategies are needed to increase HIV testing uptake and decrease HIV stigma among AYA. Citizen science, defined as the active engagement of the general public in scientific research tasks, promotes and facilitates community engagement throughout the research process. This citizen science study used crowdsourcing to engage AYA in Kazakhstan to develop a digital intervention to reduce HIV stigma and promote HIV self-testing. Our objectives in this paper are to describe the approach used, its feasibility and acceptability, and AYA motivations for and lessons learned collaborating on the study. METHODS: From October 2021 to July 2022, in collaboration with a Community Collaborative Research Board and a Youth Advisory Board, we developed an open call requesting multimedia submissions to reduce HIV testing stigma. Eligible submissions were separated by age group (13-19 or 20-29 years) and judged by a panel composed of AYA (n = 23), healthcare professionals (n = 12), and representatives from the local government and non-governmental organizations (n = 17). Each entry was reviewed by at least four judges and ranked on a 5-point scale. The top 20 open call contestants were asked to submit self-recordings sharing their motivation for and experience participating in the contest and lessons learned. Descriptive statistics were calculated for quantitative data. Qualitative data were coded using open coding. RESULTS: We received 96 submissions from 77 youth across Kazakhstan. Roughly, three-quarters (n = 75/96) of entries met judging eligibility criteria. Of the eligible entries, over half (n = 39/75) scored 3.5 or higher on a 5-point scale (70.0%). The most frequent types of entries were video (n = 36/96, 37.5%), image (n = 28/96, 29.2%) and text (n = 24/96, 25.0%). AYA's primary motivations for collaborating on the study included a desire to improve society and help youth. The main challenges included creating content to address complex information using simple language, finding reliable information online and technological limitations. CONCLUSIONS: Crowdsourcing was feasible and highly acceptable among AYA in Kazakhstan. Citizen science approaches hold great promise for addressing the increasingly complex health and social challenges facing communities today.
Assuntos
Ciência do Cidadão , Infecções por HIV , Autoteste , Estigma Social , Humanos , Adolescente , Cazaquistão , Infecções por HIV/diagnóstico , Infecções por HIV/psicologia , Infecções por HIV/prevenção & controle , Adulto Jovem , Masculino , Feminino , Ciência do Cidadão/métodos , Adulto , Teste de HIV/métodosRESUMO
OBJECTIVES: We provide a guide to conducting a crowdsourcing activity at an international sexually transmitted infection (STI) conference to design public messaging about STI testing and disseminating that messaging via social media. METHODS: A speaker gave a presentation at a conference plenary session on the concepts of cocreation, crowdsourcing and designathons, and the application of these participatory approaches in public health research. To illustrate one of these approaches (crowdsourcing), attendees in the audience were asked to take part in a voluntary participatory activity, in which they would pair up with a fellow attendee sitting nearby and write down an idea on a blank notecard. Dyads were given 10 min to create an entry responding to the prompt, 'Write something that inspires gonorrhoea and/or chlamydia testing (eg, picture, jingle, rhyme)'. Each entry was judged by at least four independent judges on a scale of 0 (lowest quality) to 10 (highest quality) based on their innovation and potential to promote chlamydia/gonorrhoea testing. Scores were averaged to determine the finalist entries. RESULTS: We received 32 entries. The average score was 6.41 and scores ranged from 4.5 to 8 (median 6.63, IQR 5.75, 7.06). Half of entries (n=16) were slogans, 15.6% (n=5) were poems/rhymes, 12.5% (n=4) were memes/images, 9.4% (n=3) were programme implementation ideas, 3.1% (n=1) was a song verse, and 3.1% (n=1) was a video idea. One finalist entry was a meme and received 720 impressions, 120 engagements, 27 detail expands, 19 likes, 6 reposts and 1 response on Twitter. The second finalist entry was a slogan and received 242 impressions, 16 engagements, 6 detail expands, 4 likes and 2 reposts. CONCLUSIONS: Conducting crowdsourcing activities at future conferences may be an innovative, feasible way to develop and disseminate engaging and important STI and other health messaging to the public in a short period of time.
Assuntos
Chlamydia , Crowdsourcing , Gonorreia , Infecções Sexualmente Transmissíveis , Humanos , Gonorreia/diagnóstico , Infecções Sexualmente Transmissíveis/diagnóstico , Infecções Sexualmente Transmissíveis/prevenção & controle , Saúde PúblicaRESUMO
Purpose: HIV-positive people who inject drugs (PWID) in Kazakhstan face many challenges to antiretroviral therapy (ART) adherence. Interventions that leverage social support from an intimate partner, family member, or friend may be effective in improving ART adherence among this population. The purpose of this paper is to describe the implementation process of a dyad-based intervention among HIV-positive PWID and their treatment support partners. Method: Sixty-six HIV-positive PWID and 66 of their treatment support partners will be enrolled in this pilot randomized controlled trial in Almaty, Kazakhstan, and randomized as dyads to receive an adapted version of the SMART Couples intervention or standard of care. Results: Several implementation strategies were used to facilitate intervention delivery, including remote delivery, training of staff, supervision, technical assistance, quality assurance, and collection of assessments through diverse sources. Discussion: This trial responds to a need for dyad-based ART adherence interventions adapted specifically for HIV-positive PWID.
RESUMO
OBJECTIVE: Bacterial vaginosis (BV) is associated with adverse reproductive outcomes, and recurrence is common. We examined factors associated with BV recurrence using electronic medical record data for patients attending New York City Department of Health and Mental Hygiene sexual health clinics from 2014 to 2018. METHODS: Clinician-diagnosed BV was defined using a clinical BV diagnosis code based on Amsel criteria. Recurrent BV was defined as any BV diagnosis occurring more than 30 days after the previous diagnosis. Adjusted hazard ratios (AHRs) for the relationship between potential risk factors and recurrent BV were estimated using conditional gap-time models. RESULTS: The data set contained 14,858 patients with at least one BV diagnosis. Of these, 46.3% (n = 6882) had at least 1 follow-up visit to a sexual health clinic between January 2014 and December 2018. Of those with a follow-up visit, 53.9% (n = 3707) had ≥1 recurrent BV episode, with 33.7% (n = 2317) experiencing recurrence within 3 months. In the multivariable model, using a hormonal intrauterine device (IUD; AHR, 1.31; 95% confidence interval [CI], 1.14-1.49) or copper IUD (AHR, 1.17; 95% CI, 1.01-1.37), having a history of trichomonas (AHR, 1.23; 95% CI, 1.12-1.36), and being non-Hispanic Black (AHR, 1.11; 95% CI, 1.04-1.18) were associated with a higher risk of BV recurrence, whereas using non-IUD hormonal contraception was associated with reduced risk (AHR, 0.88; 95% CI, 0.80-0.98). CONCLUSIONS: Risk of BV recurrence was increased among patients using an IUD, whereas it was reduced in patients using non-IUD hormonal contraception.
Assuntos
Dispositivos Intrauterinos , Saúde Sexual , Vaginose Bacteriana , Feminino , Humanos , Vaginose Bacteriana/epidemiologia , Vaginose Bacteriana/diagnóstico , Cidade de Nova Iorque/epidemiologia , Fatores de Risco , Dispositivos Intrauterinos/efeitos adversosRESUMO
Given the burden of HIV and other sexually transmitted infections among adolescents who are legal minors, it is critical that they be included in biomedical sexual health trials to ensure that new prevention and treatment interventions are safe, effective, and acceptable for their use. However, adolescents are often not well represented in clinical trials. We provide an overview of the available evidence regarding adolescent and parent willingness for adolescents to participate in biomedical sexual health trials, parental involvement in the permission-consent process, management of differences and discord among adolescents and parents, and parental involvement throughout the study period. We also outline recommendations for current practice and areas for future research.
Assuntos
Menores de Idade , Consentimento dos Pais/legislação & jurisprudência , Pais/psicologia , Seleção de Pacientes , Percepção , Saúde Sexual , Adolescente , Humanos , Menores de Idade/legislação & jurisprudência , Menores de Idade/psicologia , PesquisaRESUMO
Attending physicians (N = 53) at a nonprofit, university-affiliated academic children's hospital completed a survey about how key stakeholders affect timing of patient discharge beyond attending assessment of medical stability. Physicians perceived families and hospital administration as more often having an impact on discharge timing than they should and perceived members of the care team and peer physicians/consultants as less frequently having an impact than they should. All but one physician reported discharging a patient either earlier or later than they felt was appropriate due to pressure from at least one stakeholder group; almost all physicians had done so in response to pressure from families. When physicians changed discharge timing based on stakeholder pressure, they tended to extend hospital stay except in the case of administrative pressure. These findings highlight the need for improvements in communication regarding discharge goals and for future research on how navigating competing interests affect physician stress.
RESUMO
Little is known about whether adolescent participation in sexual health research prompts adolescents and parents to have conversations about sensitive topics. One year after being presented with a hypothetical microbicide safety study, 248 adolescent-parent dyads were asked about conversations they may have had after their initial study visit. Sixty-three per cent of adolescents and 82% of parents reported having a conversation about the study. A launching conversation about broader topics (e.g. risk behaviours) was reported by 8% of adolescents and 17% of parents. Because there is evidence that conversations are occurring, researchers could provide guidance to help facilitate potentially sensitive discussions.
Assuntos
Atitude Frente a Saúde , Comunicação , Relações Pais-Filho , Pesquisa , Saúde Sexual , Adolescente , Ensaios Clínicos como Assunto , Feminino , Humanos , MasculinoRESUMO
Little is known about how adolescents' and parents' thoughts about participation in clinical trials change over time. In this study, adolescent (14-17 years)-parent dyads were asked about willingness to participate in a hypothetical reproductive health study. A year later, they were asked how their thoughts about the study had changed. Qualitative responses were coded and analyzed using framework analysis. Thirty-two percent of adolescents and 18% of parents reported changes in thoughts; reasons included general changes in perception, clearer understanding, new knowledge or experiences, increased maturity/age of adolescents, and changes in participants independent of the study. Adolescents and parents may benefit from learning about studies multiple times, and investigators should account for development and new experiences to optimize adolescent research enrollment.
Assuntos
Atitude , Pesquisa Biomédica , Consentimento Livre e Esclarecido , Pais , Adolescente , Comportamento do Adolescente , Desenvolvimento do Adolescente , Fatores Etários , Compreensão , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Consentimento Informado por Menores , Masculino , Pesquisa Qualitativa , Saúde Reprodutiva , Sujeitos da PesquisaRESUMO
STUDY OBJECTIVE: In this study we describe adolescent and parent retention and changes in willingness to participate (WTP) in research among adolescents, parents, and adolescent-parent dyads. DESIGN AND SETTING: Adolescent-parent dyads were recruited to participate in a longitudinal study to assess research participation attitudes using simultaneous individual interviews of the adolescent and parent with a return visit 1 year later using the same interview. PARTICIPANTS: Adolescents (14-17 years old) and their parents. INTERVENTIONS: None. MAIN OUTCOME MEASURES: The relationship between participant characteristics and dyad retention was assessed. WTP was measured on a Likert scale and dichotomized (willing/unwilling) to assess changes in WTP attitudes over time for adolescents, parents, and dyads. RESULTS: Eighty-three percent of the 300 dyads were retained. Dyads in which there was successful contact with the parent before follow-up were more likely to be retained (odds ratio, 4.88; 95% confidence interval, 2.57-9.26). For adolescents at baseline, 59% were willing to participate and 55% were willing to participate at follow-up (McNemar S = 0.91; P = .34). For parents at baseline, 51% were willing to participate and 57% were willing to participate at follow-up (McNemar S = 5.12; P = .02). For dyads at baseline, 57% were concordant (in either direction) and 70% of dyads were concordant at follow-up (McNemar S = 10.56; P = .001). CONCLUSION: Over 1 year, parent contact might positively influence successful adolescent retention. Parents become more willing to let their adolescents participate over time, with dyads becoming more concordant about research participation.
Assuntos
Atitude , Ensaios Clínicos como Assunto/psicologia , Relações Pais-Filho , Pais/psicologia , Sujeitos da Pesquisa/psicologia , Adolescente , Adulto , Anti-Infecciosos , Feminino , Humanos , Estudos Longitudinais , Masculino , Fatores de TempoRESUMO
INTRODUCTION: This study examined whether aspects of parenting style (specifically, warmth, autonomy support, and coercion) moderated the association between parental involvement and adherence in youth with type 1 diabetes. METHODS: Children ages 8 to 16 years with type 1 diabetes and a parent completed assessments of parental involvement, parenting style, and adherence. RESULTS: Parent autonomy support and coercion were associated with adherence but warmth was not. Child report of more parental involvement was associated with better adherence. Warmth, autonomy support, and coercion were not moderators. DISCUSSION: The findings underscore the importance of parental involvement, operationalized as responsibility for diabetes tasks, and parenting style, specifically coercion and autonomy support, for adherence in pediatric chronic illness management. Longitudinal research is needed to better understand how and why dimensions of involvement (e.g., responsibility, monitoring, support) vary over time and whether they impact outcomes differentially.
Assuntos
Diabetes Mellitus Tipo 1/terapia , Poder Familiar/psicologia , Cooperação e Adesão ao Tratamento/psicologia , Adolescente , Criança , Coerção , Diabetes Mellitus Tipo 1/psicologia , Feminino , Humanos , Masculino , Relações Pais-Filho , Autonomia Pessoal , Psicometria/instrumentação , Psicometria/métodos , Análise de Regressão , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: DSM-5 conceptualized attenuated psychosis syndrome (APS) as self-contained rather than as a risk syndrome, including it under "Conditions for Further Study," but also as a codable/billable condition in the main section. Since many major mental disorders emerge during adolescence, we assessed the frequency and characteristics of APS in adolescent psychiatric inpatients. METHODS: Consecutively recruited adolescents hospitalized for nonpsychotic disorders (September 2009-May 2013) were divided into APS youth versus non-APS youth, based on the Structured Interview of Prodromal Syndromes (SIPS) and according to DSM-5 criteria, and compared across multiple characteristics. RESULTS: Of 89 adolescents (mean ± SD age = 15.1 ± 1.6 years), 21 (23.6%) had APS. Compared to non-APS, APS was associated with more comorbid disorders (2.7 ± 1.0 vs 2.2 ± 1.3), major depressive disorder (61.9% vs 27.9%), oppositional defiant disorder/conduct disorder (52.4% vs 25.0%), and personality disorder traits (57.1% vs 7.4%, the only diagnostic category surviving Bonferroni correction). APS youth were more severely ill, having higher SIPS total positive, negative, and general symptoms; Brief Psychiatric Rating Scale total and positive scores; depression and global illness ratings; and lower Global Assessment of Functioning (GAF). Conversely, Young Mania Rating Scale scores, suicidal behavior, prescribed psychotropic medications, and mental disorder awareness were similar between APS and non-APS groups. In multivariable analysis, lowest GAF score in the past year (odds ratio [OR] = 51.15; 95% confidence interval [CI], 2.46-2,439.0) and social isolation (OR = 27.52; 95% CI, 3.36-313.87) were independently associated with APS (r(2) = 0.302, P < .0001). Although psychotic disorders were excluded, 65.2% (APS = 57.1%, non-APS = 67.7%, P = .38) received antipsychotics. CONCLUSION: One in 4 nonpsychotic adolescent inpatients met DSM-5 criteria for APS. APS youth were more impaired, showing a complex entanglement with a broad range of psychiatric symptoms and disorders, including depression, impulse-control, and, especially, emerging personality disorders. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT01383915.