Youth Involvement in Research: Participation, Contribution and Dynamic Processes

Krane, Vibeke; Klevan, Trude; Sommer, Mona

doi:10.1007/978-3-030-75941-4_3

Cited by 5 publications

(3 citation statements)

References 41 publications

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“…Creating an open, inclusive, and safe environment is crucial when engaging youth [ 31 ]. Youth may feel intimidated to share their thoughts or feel outnumbered in an environment with adults [ 32 – 34 ]. Creating a group with other youth to have balanced representation may remove potential barriers to participation and the feeling of a power imbalance [ 32 ].…”

Section: Discussionmentioning

confidence: 99%

Youth and family involvement in the development of a plain language trial results communication tool: CommuniKIDS

Baba,

Richards,

Smith

et al. 2023

Res Involv Engagem

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Background Pediatric trials are possible through voluntary participation of children, youth (age ≤ 18 years), and their families. Despite important arguments for trialists to provide trial progress or results, and evidence that participants desire it, this information remains rarely shared with youth and their families. Little guidance exists on how trialists can best communicate trial results back to participants and their families. Guided by Liabo et al.’s framework, we describe how we developed a pediatric-specific, “plain language summary” clinical trial results template called CommuniKIDS with an adult patient partner, family partner (parent), youth advisors, and parent advisors, taking into account their unique knowledge needs and preferences. Main text Patient and Public Involvement (PPI) was integrated in the development of the CommuniKIDS template. In collaboration with Clinical Trials Ontario, we used a generic trial results template as a starting point. The core project leadership team included a patient partner and a family partner from project inception to completion. Five youth (ages 13–18 years) and eight parent advisors were consulted at each point of the development process through three virtual workshops conducted separately; youth workshops were led by a youth facilitator. During these workshops, advisors agreed on the importance and value of sharing trial results, and expressed their preferences on content, format, and timing of sharing trial results. PPI-led improvements included the addition of three new sections to the CommuniKIDS template: “at a glance,” “side effects,” and “next steps.” We reflect on our PPI strategy in the context of five “values” and six “practicalities” identified as good PPI principles, and summarize lessons learned when collaborating with youth and families from this project. Conclusion Involvement of a patient partner, a family partner, youth advisors, and parent advisors in the development of CommuniKIDS was critical to create a clinical trial results template that is useful and relevant to its end-users. To our knowledge, CommuniKIDS is the first to meaningfully engage youth and parents as advisors and partners in developing a plain language summary results template for pediatric trial participants and their families. Our experience of co-developing CommuniKIDS demonstrates that meaningful PPI can be achieved in trial results communication and knowledge translation practices. This report provides resources for those seeking to involve youth and families in their initiatives and in meaningfully sharing trial results.

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Section: Discussionmentioning

confidence: 99%

Youth and family involvement in the development of a plain language trial results communication tool: CommuniKIDS

Baba,

Richards,

Smith

et al. 2023

Res Involv Engagem

View full text Add to dashboard Cite

show abstract

“…The active participation of direct stakeholders (individuals directly impacted by the research) in research has been highlighted in recent years as key to ensuring that research is relevant and actually reflects the views of the participants (Krane et al 2021). With the participation of vulnerable youth at the very core of this study, it was imperative that the youth were able to report their perspectives of their skills and opportunities.…”

Section: Methodsmentioning

confidence: 99%

Changing the Story: The Evaluation of a Leadership Development Programme for Vulnerable and Deaf Youth in South Africa

Bastable,

Cooke,

Harvey

et al. 2023

Social Sciences

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Vulnerable youth and youth with disabilities are at great risk of not having their rights met. In addition, they face challenges with regard to empowerment and participation in their own lives. Youth development programmes frequently focus primarily on the individual skills of the youth. However, reviews have indicated that for youth to be able to drive change, additional opportunities at community and broader society levels are required. This project sought to evaluate the changes facilitated by the Changing the Story—Leadership Development Programme as implemented in the Youth Accountability and Deaf Inclusion in South Africa project, for both vulnerable and Deaf youth. A longitudinal Q-sort methodology was used to measure the youths’ changes in perceptions. The results provided evidence of significant change following the programme, including increases in perceptions of empowerment within the community. Furthermore, although vulnerable and Deaf youth began the programme with differing perceptions of self, community and society, these perceptions were more aligned after completion of the programme. The results and challenges experienced using a longitudinal Q-sort methodology are presented and discussed. Recommendations and limitations are also highlighted.

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“…The inclusion of young people in research processes has often been limited to observed participants, rather than active co-researchers. This has resulted in gaps in the literature and often superficial insights into young peoples' experiences (Krane et al, 2021). There have been limited CBPR opportunities for youth (Jacquez et al, 2013; Simpson & Mendenhall, 2022), despite evidence suggesting that youth involvement in research processes can deliver effective and innovative solutions (Langdon et al, 2016; McCalman et al, 2013).…”

Section: Introductionmentioning

confidence: 99%

A Systematic Methods Review of Photovoice Research with Indigenous Young People

Anderson

Elder‐Robinson

Howard

et al. 2023

International Journal of Qualitative Methods

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Photovoice is an emerging qualitative research method used to engage community members in research that highlights their lived experiences and initiate change. Photovoice offers potential benefits to research conducted by and with Indigenous communities through privileging Indigenous knowledge and perspectives. There is a lack of synthesized evidence about the usage, benefits, and challenges of conducting Photovoice research by and with Indigenous communities, which this systematic methods review aims to address. We specifically focus on Indigenous young people in Canada, Australia, Aotearoa New Zealand, and the United States. Five databases were searched systematically for articles including keywords for ‘Indigenous’ and ‘Photovoice’. Empirical studies and methods papers reporting the use of Photovoice with majority cohorts of young Indigenous participants were included. Relevant data were extracted and Photovoice methods analysed using an integrative approach. Database searches yielded 1402 articles, with 109 reviewed in full and 41 included in the review. These articles represented 37 unique studies, with most from Canada ( n = 17), and the United States ( n = 14). Our analysis revealed great variability in how Photovoice has been applied across studies with Indigenous young people. However, some notable commonalities include recruitment of participants via community networks, and participant involvement in data collection and analysis. The potential benefits associated with using Photovoice with Indigenous young people included: fostering participant autonomy and authority; photography being familiar and fun; the visual medium being culturally appropriate for Indigenous peoples; and the method being effective for engaging the whole community. Challenges associated with Photovoice included: engagement difficulties between researchers and participants; issues with photography; and ethical complexities. These findings suggest that Photovoice is an appropriate and largely effective method to engage young Indigenous people in research. However, there are logistical and ethical issues associated with the method that require careful consideration.

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Youth Involvement in Research: Participation, Contribution and Dynamic Processes

Cited by 5 publications

References 41 publications

Youth and family involvement in the development of a plain language trial results communication tool: CommuniKIDS

Youth and family involvement in the development of a plain language trial results communication tool: CommuniKIDS

Changing the Story: The Evaluation of a Leadership Development Programme for Vulnerable and Deaf Youth in South Africa

A Systematic Methods Review of Photovoice Research with Indigenous Young People

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