Assessing Engagement of Adolescents and Young Adults (AYA) in HIV Research: A Multi-method Analysis of a Crowdsourcing Open Call and Typology of AYA Engagement in Sub-Saharan Africa

Tahlil, Kadija M; Rachal, Laura; Gbajabiamila, Titi; Nwaozuru, Ucheoma; Obiezu-Umeh, Chisom; Hlatshwako, Takhona Grace; Tembo, Mandikudza; Willis, Nicola; Nyagog, Carine Oum; Vorkoper, Susan; Sturke, Rachel; Rosenberg, Nora E.; Ojo, Victor; Moses, Isaac; Ahmed, Nadia; Beima‐Sofie, Kristin; Roberts, Sarah T.; Kateera, Brenda; Namisoke-Magongo, Eleanor; Mbizvo, Michael T.; Iwelunmor, Juliet; Ezechi, Oliver; Tucker, Joseph D.

doi:10.1007/s10461-022-03786-3

Cited by 8 publications

(5 citation statements)

References 36 publications

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“…In our analyses of scores, participants and projects that engaged in varying forms of engagement obtained the highest scores. These findings corroborate the findings of studies analysing youth engagement in other crowdsourcing open calls, which also found that youth were involved across projects in similarly varying levels or depths of engagement [ 24 ]. These also align with Hart’s ladder of youth engagement.…”

Section: Discussionsupporting

confidence: 87%

Youth engagement and social innovation in health in low-and-middle-income countries: Analysis of a global youth crowdsourcing open call

Tan,

Shan,

Hummel

et al. 2024

PLOS Glob Public Health

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Social innovation in health is a ground-up, community-engaged process that draws on the diverse strengths of local individuals to drive social change and health improvement. Social innovation may be particularly useful in low and middle-income countries to ensure effective and sustainable health solutions. The purpose of this study is to describe the findings of a global youth (18–35 years old) crowdsourcing open call on social innovations, and to identify the levels of engagement in such innovations. We organized a global crowdsourcing open call (Go Youth!) to identify and recognize youth social innovations in health and adopted both quantitative and qualitative approaches to analyze our data. For quantitative analyses, we described the socio-demographic characteristics of youth who submitted innovations. For qualitative analyses, we adopted a deductive-inductive analytic approach utilizing an adapted Hart’s Ladder as a conceptual framework for our thematic analysis of participants’ submissions, which comprised four levels of youth engagement: none, minimal, moderate, and substantial. The open call received 99 eligible submissions. Most participants were 23 years of age or older (90.7%), resided in LMICs (98.0%), male (64.3%), and had a bachelor’s or higher degree (72.4%). Most of the submissions were written in English (93.9%), located in Africa (69.7%), and had prior implementation (60.2%). A total of 39 innovations had substantial youth engagement and qualitative data suggested that youth leadership and peer mentorship of other youth in the community were important aspects of engagement. LMIC youth developed and implemented social innovations that had evidence of impact or effectiveness in their communities, illustrating how social innovation approaches may be feasible in LMICs. More efforts should be made to identify and empower youth in these settings to spark change.

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Section: Discussionsupporting

confidence: 87%

Youth engagement and social innovation in health in low-and-middle-income countries: Analysis of a global youth crowdsourcing open call

Tan,

Shan,

Hummel

et al. 2024

PLOS Glob Public Health

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“…The study serves as a useful model for designing inclusive methods to broaden public engagement in addressing stigma. Compared with other studies using crowdsourcing among diverse populations, we received a large number of submissions and a high percentage of high‐quality submissions [18, 36], indicating high acceptability. Our findings indicate that crowdsourcing is a feasible citizen science approach to use among AYA in central Asia.…”

Section: Discussionmentioning

confidence: 90%

A citizen science approach to develop a digital intervention to reduce HIV stigma and promote HIV self‐testing among adolescents and young adults: a mixed methods analysis from Kazakhstan

Davis,

Rosenthal,

Tucker

et al. 2024

J Int AIDS Soc.

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IntroductionKazakhstan 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.MethodsFrom 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.ResultsWe 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.ConclusionsCrowdsourcing 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.

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“…Another increasingly used population-level engagement tool is crowdsourcing. Crowdsourcing is a bottom-up approach to engage people in solving part of or a public health problem [37,38 ▪ ]. Crowdsourcing has been commonly organized as open calls to solicit ideas and strategies to tackle STI issues from the entire target population or multiple key stakeholder groups across a city, a country or even worldwide.…”

Section: Policy/population Level Engagement Toolsmentioning

confidence: 99%

“…By leveraging digital platforms, researchers can recruit individuals for research studies by distributing recruitment information on broader media platforms, effectively reaching marginalized communities [39]. Additionally, digital tools are also instrumental in collaborating with community partners to co-develop intervention strategies, evident by the thriving of crowdsourcing contests and virtual co-creation in digital health research landscape [38 ▪ ,40]. Such remote engagement became particularly relevant in times of pandemic such as COVID-19 [12], enable the gathering of insights without geographical constraints.…”

Section: Virtual Engagement: Digital Approachesmentioning

confidence: 99%

Community engagement tools in HIV/STI prevention research

Li,

Zhao,

Tan

et al. 2023

Current Opinion in Infectious Diseases

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Purpose of review Community engagement is key to the success of sustainable public health interventions. This review highlights recent published studies that describe the use of community-engaged methods in sexually transmitted infection (STI) prevention research. Recent findings We organized the findings using a socio-ecological model. At the individual level, communities were engaged through participation in formative research, short-term consultations and community advisory board participation, as well as co-creation activities. At the interpersonal level, studies reviewed described peer-led interventions that leverage the influence and guidance of peers, patient-led interventions in the form of patient navigation and notification, as well as those that mobilize social networks and the power of social relationships to promote health. At the organizational and community level, multisectoral, multifacility collaborations between community, government, and academic stakeholders were highlighted. At the policy and population level, communities were engaged through community dialogues to disseminate research findings, as well as in developing strategic frameworks and clinical guidelines. Digital tools have also been leveraged for effective community engagement. Summary Communities have an effective role to play in STI prevention and can be engaged at multiple levels. Future efforts may consider the use of community engagement tools highlighted in this review, including digital technologies that have the potential to reach more diverse end-users.

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Assessing Engagement of Adolescents and Young Adults (AYA) in HIV Research: A Multi-method Analysis of a Crowdsourcing Open Call and Typology of AYA Engagement in Sub-Saharan Africa

Cited by 8 publications

References 36 publications

Youth engagement and social innovation in health in low-and-middle-income countries: Analysis of a global youth crowdsourcing open call

Youth engagement and social innovation in health in low-and-middle-income countries: Analysis of a global youth crowdsourcing open call

A citizen science approach to develop a digital intervention to reduce HIV stigma and promote HIV self‐testing among adolescents and young adults: a mixed methods analysis from Kazakhstan

Community engagement tools in HIV/STI prevention research

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