Abstract
Engaging youth in obesity prevention research and policy action is essential to develop strategies that are relevant and sensitive to their needs. Research with young people requires critical reflection to safeguard their rights, dignity, and well-being. The CO-CREATE project used various methods to engage approximately 300 European youth aged 15–19 years in the development of policies to prevent adolescent obesity. This paper discusses ethical considerations made in the project pertaining to the youth's voluntary participation, their protection from obesity stigma, respect for their time, data privacy and confidentiality, power balance, and equality of opportunity to participate in the research. We describe measures implemented to prevent or limit the emergence of ethical challenges in our interaction with youth and discuss their relevance based on our experience with implementation. While some challenges seemingly were prevented, others arose related to the youth's voluntary participation, time burdens on them, and the sustainability of participation under the Covid-19 pandemic. Concrete and ongoing ethical guidance may be useful in projects aiming to interact and build collaborative relationships with youth for long periods of time.
Original language | English |
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Article number | e13518 |
Journal | Obesity Reviews |
Volume | 24 |
Issue number | S1 |
Early online date | 22 Nov 2022 |
DOIs | |
Publication status | Published - 28 Feb 2023 |
Bibliographical note
Funding Information:In 2018, the European Union's Horizon 2020 research and innovation programme funded a 5‐year project entitled “Confronting obesity: Co‐creating policy with youth” (CO‐CREATE). The project gathers 14 research institutions and civil society organizations in Europe. One member of the research consortium is a youth organization, which is represented both on the project's executive board and on project working groups to represent the youth perspectives. The project is present in the Netherlands, Norway, Poland, Portugal, the United Kingdom, Australia, South Africa, and the United States. From 2019 to 2021, the project engaged with approximately 300 European youth aged 15–19 of diverse socioeconomic background in the development of proposals for obesity prevention policies ( “Overweight and obesity prevention for and with adolescents: The ‘Confronting obesity—Co‐creating policy with youth project’”, s). Youth were recruited from schools, youth organizations, scouts, and a municipality in the Netherlands, Norway, Poland, Portugal, and the United Kingdom. The young people could participate in three types of activities: system mapping workshops, Youth Alliances and Dialogue Forums (Figure 1 —Youth engagement activities and timeline). For youth willing to participate in all activities, the engagement period, from start to end, was planned to last for about a year. However, for methodological reasons, most young people participating in the system mapping workshops did not subsequently pursue their participation in the project, and new groups of youth were recruited to the Youth Alliances. The young people joined two system mapping workshops of 2 h each to discuss systemic factors they perceived to influence obesity, using “group model building.” Group model building uses processes to represent these factors in conceptual system maps to illustrate how different parts of the system, for instance food and physical activity, relate to one another to result in obesity. Later, new groups of young people were invited to join Youth Alliances to elaborate on the systemic factors identified by their peers during the system mapping workshops and, in collaboration with the researchers, develop policy ideas that support healthy eating and physical activity. The design of the Youth Alliances was inspired by YPAR approaches and followed an indicative program of around 10 meetings, each meeting lasting 1–3 h. Although the topic of focus was already decided (development of obesity prevention policies) and our program of activities was ambitious, we hoped that the young people would find the issue relevant to them and their communities and would be willing to dedicate some time to work with us. The young people could decide on how often to meet, how to organize the alliances, and how to work with policy development, for instance deciding on the kind of activities to conduct, and which prevention strategies to adopt. The alliance members used various tools to support the co‐creation of policy ideas such as surveys, advocacy training, a budget, policy forms, and photovoice to learn about policy, to get a better understanding of obesogenic environments and to test their policy ideas of how to change the obesogenic system. The young people received support from the CO‐CREATE staff and co‐facilitators, which were young people recruited from local youth organizations ( “Negotiating policy‐ideas: Analysing 15 participatory action projects across 5 European Countries”). Finally, from June 2020, youth who had participated in the Youth Alliances, and other youth identified through youth organizations, campaigns, and community initiatives, could participate in a Dialogue Forum of 2 h to discuss and refine their policy ideas with relevant stakeholders such as policymakers and private sector representatives. The Dialogue Forums were conducted using an interactive dialogue tool to facilitate the discussions and could be moderated by young people (). Although most activities with the young people were held in schools or at the premises of the organizations through which the youth had been recruited, after March 2020 the outbreak of the Covid‐19 pandemic leading to lockdown and other restrictions in most countries, meetings and activities had to be conducted online. 25 Personal reference: Klepp KI et al., 2022, submitted to Obesity Review 26 27,28 29,30 31 31 Personal reference: Bröer et al., , 2022, submitted to the European Journal of Cultural and Political Sociology Personal reference: CO‐CREATE D6.4: Implement and evaluate Dialogue Forums at regional, national and city levels, submitted to the European Commission
Funding Information:
The CO‐CREATE project has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No 774210. The content of this document reflects only the authors' views, and the European Commission is not liable for any use that may be made of the information it contains. The authors would like to acknowledge Therese Wardenær Bakke for her comments to the manuscript.
Funding
In 2018, the European Union's Horizon 2020 research and innovation programme funded a 5‐year project entitled “Confronting obesity: Co‐creating policy with youth” (CO‐CREATE). The project gathers 14 research institutions and civil society organizations in Europe. One member of the research consortium is a youth organization, which is represented both on the project's executive board and on project working groups to represent the youth perspectives. The project is present in the Netherlands, Norway, Poland, Portugal, the United Kingdom, Australia, South Africa, and the United States. From 2019 to 2021, the project engaged with approximately 300 European youth aged 15–19 of diverse socioeconomic background in the development of proposals for obesity prevention policies ( “Overweight and obesity prevention for and with adolescents: The ‘Confronting obesity—Co‐creating policy with youth project’”, s). Youth were recruited from schools, youth organizations, scouts, and a municipality in the Netherlands, Norway, Poland, Portugal, and the United Kingdom. The young people could participate in three types of activities: system mapping workshops, Youth Alliances and Dialogue Forums (Figure 1 —Youth engagement activities and timeline). For youth willing to participate in all activities, the engagement period, from start to end, was planned to last for about a year. However, for methodological reasons, most young people participating in the system mapping workshops did not subsequently pursue their participation in the project, and new groups of youth were recruited to the Youth Alliances. The young people joined two system mapping workshops of 2 h each to discuss systemic factors they perceived to influence obesity, using “group model building.” Group model building uses processes to represent these factors in conceptual system maps to illustrate how different parts of the system, for instance food and physical activity, relate to one another to result in obesity. Later, new groups of young people were invited to join Youth Alliances to elaborate on the systemic factors identified by their peers during the system mapping workshops and, in collaboration with the researchers, develop policy ideas that support healthy eating and physical activity. The design of the Youth Alliances was inspired by YPAR approaches and followed an indicative program of around 10 meetings, each meeting lasting 1–3 h. Although the topic of focus was already decided (development of obesity prevention policies) and our program of activities was ambitious, we hoped that the young people would find the issue relevant to them and their communities and would be willing to dedicate some time to work with us. The young people could decide on how often to meet, how to organize the alliances, and how to work with policy development, for instance deciding on the kind of activities to conduct, and which prevention strategies to adopt. The alliance members used various tools to support the co‐creation of policy ideas such as surveys, advocacy training, a budget, policy forms, and photovoice to learn about policy, to get a better understanding of obesogenic environments and to test their policy ideas of how to change the obesogenic system. The young people received support from the CO‐CREATE staff and co‐facilitators, which were young people recruited from local youth organizations ( “Negotiating policy‐ideas: Analysing 15 participatory action projects across 5 European Countries”). Finally, from June 2020, youth who had participated in the Youth Alliances, and other youth identified through youth organizations, campaigns, and community initiatives, could participate in a Dialogue Forum of 2 h to discuss and refine their policy ideas with relevant stakeholders such as policymakers and private sector representatives. The Dialogue Forums were conducted using an interactive dialogue tool to facilitate the discussions and could be moderated by young people (). Although most activities with the young people were held in schools or at the premises of the organizations through which the youth had been recruited, after March 2020 the outbreak of the Covid‐19 pandemic leading to lockdown and other restrictions in most countries, meetings and activities had to be conducted online. 25 Personal reference: Klepp KI et al., 2022, submitted to Obesity Review 26 27,28 29,30 31 31 Personal reference: Bröer et al., , 2022, submitted to the European Journal of Cultural and Political Sociology Personal reference: CO‐CREATE D6.4: Implement and evaluate Dialogue Forums at regional, national and city levels, submitted to the European Commission The CO‐CREATE project has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No 774210. The content of this document reflects only the authors' views, and the European Commission is not liable for any use that may be made of the information it contains. The authors would like to acknowledge Therese Wardenær Bakke for her comments to the manuscript.
Keywords
- ethics
- obesity
- participatory research
- youth