The Youth Engagement Study (YES!): How can we optimise adolescent participation in chronic disease prevention research?


  • Mariam Mandoh The University of Sydney
  • Stephanie Partridge The University of Sydney
  • Julie Redfern The University of Sydney
  • Philayrath Phongsavan The University of Sydney
  • Hoi Lun Cheng The University of Sydney
  • Seema Mihrshahi Macquarie University


Background: Adolescent participation in decision-making is now widely accepted to enhance chronic disease prevention research and intervention development. However, optimal modes to engage adolescents, particularly in the digital age remains unknown.

Aims: To identify a) how adolescents perceive youth participation, b) barriers and facilitators to participation c) how adolescents want to be engaged in chronic disease prevention decision-making.

Methods: Two phases between Feb-July-2022: 1) digital cross-sectional survey, 2) digital focus groups. Eligible participants were 13-18 years-old and living in Australia. Quantitative and qualitative data were analysed using descriptive statistics and thematic analyses, respectively.

Results: Overall, 520 participants completed the study (cross-sectional survey n=501, focus groups n=19; mean age 16 years SD1.2, 60% (319/520) female, 37% (194/520) culturally and linguistically diverse and 23% (121/520) lived rurally. Twenty percent (100/501) reported engagement in health promoting activities. Those who had not been involved reported ‘lack of opportunity’ (>60%, 171/278) as the major barrier to participation. Furthermore, 45% (227/501) of participants reported ‘hybrid’ participation combining digital and face-face components as preferred delivery method. Adolescents reported that participatory methods such as co-design, advocacy, leadership and advisory groups (42%, 213/501) would provide the most influence over health promoting activities for adolescents. Focus group data established a need for digital participatory methods to permit flexibility and accessibility.

Conclusion: This digital study enabled the inclusion of a diverse sample of adolescent participants from across Australia. Findings suggest adolescents are rarely engaged in health promoting activities that affect them. Identified barriers need to be addressed to ensure meaningful engagement.





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