A Novel Way to Engage Youth in Research: Evaluation of a Participatory Health Research Project by the International Children's Advisory Network Youth Council

Tsang, Vivian; Fletcher, Sarah; Thompson, Charles A.; Smith, Sharon R.

doi:10.2139/ssrn.3408066

Cited by 7 publications

(23 citation statements)

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“…One approach to engaging young people is through youth advisory groups. Such advisory groups (either general or population/patient‐specific) allow youth to be included as partners offering advice and feedback on issues that affect them, rather than simply acting as participants in the process 2,10 . In Canada, there is emerging literature on the development of youth advisory groups in research and health 2,11–14 .…”

Section: Introductionmentioning

confidence: 99%

“…Such advisory groups (either general or population/patient‐specific) allow youth to be included as partners offering advice and feedback on issues that affect them, rather than simply acting as participants in the process. 2 , 10 In Canada, there is emerging literature on the development of youth advisory groups in research and health. 2 , 11 , 12 , 13 , 14 For example, Ramey et al 14 describe a youth advisory group focused on youth health issues.…”

Section: Introductionmentioning

confidence: 99%

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Research‐ and health‐related youth advisory groups in Canada: An environmental scan with stakeholder interviews

Chan

Scott

Campbell

et al. 2021

Health Expectations

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Background Engaging youth throughout the research process improves research quality and outcomes. Youth advisory groups provide one way for youth to express their opinions on relevant issues. Objective This study aimed to identify research‐ and health‐related youth advisory groups (‘groups’) in Canada and understand the best practices of these groups. Methods Google searches and supplementary methods were used to identify relevant groups in Canada. Group information was extracted from websites or through interviews with key informants. Results We identified 40 groups. Groups were commonly part of a hospital/healthcare facility, nonprofit/health organization or research group. The majority focused on a specific content area, most commonly, mental health. Over half the groups advised on health services. Members' ages ranged from 9 to 35 years. The number of members ranged from 5 to 130. Interviews (n = 12) identified seven categories relating to group practices: (a) group purpose/objectives, (b) group development, (c) group operations, (d) group structure, (e) adult involvement, (f) membership and recruitment and (g) group access. Challenges and facilitators to the success of groups were described within the following themes: (a) retaining engagement, (b) creating a safe environment and (c) putting youth in positions of influence. Advice and recommendations were provided regarding the development of a new group. Conclusion This study provides a comprehensive overview of research‐ and health‐related youth advisory groups in Canada. This information can be used to identify groups that stakeholders could access as well as inform the development of a new group. Patient or Public Contribution Youth advisory group representatives were interviewed as part of the study.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Research‐ and health‐related youth advisory groups in Canada: An environmental scan with stakeholder interviews

Chan

Scott

Campbell

et al. 2021

Health Expectations

View full text Add to dashboard Cite

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“… Sieck, 2017, United States [ 36 ] To identify what both groups [researchers and patients] value about these approaches and how best to facilitate such partnerships Qualitative with distribution of a survey to all PP of the PFEAP 72 PP – Varied between participants Stuhlfaulth, 2019, Norway [ 30 ] To investigate experiences and collaboration between patient representatives and researchers in user involvement in health research. Qualitative with PP of the two Norwegian patient organizations 14 PP – Varied between participants Thompson, 2014, United Kingdom [ 35 ] To report on what motivated participants to get involved and their experiences of involvement in this setting Qualitative with purposive sampling 14 PP 10 F, 4 M Number of PP in age groups: 13 55-65, 1 over 65 Cancer patients and carers Varied between participants, each participant acting as an advisor on at least one research advisory group Tsang, 2020, United Kingdom [ 24 ] To describe a novel method of organizing youth participation in research and to understand the benefits and barriers of this new model Mixed methods case study 16 PP 11 F, 5 M Age 13-25, average 19 Youth Co-executing the research: the creation of project protocols, questionnaire design, ethics applications, and project execution through the organization of focus groups Vanderlee, 2020, Canada [ 46 ] To examine the experiences of researchers and parents of children with a neurodevelopmental condition who participated on a research study advisory committee Qualitative with purposive sampling 6 PP Parents of children with a neurodevelopmental disability Participation in a parent advisory committee Warner, 2021, Sweden [ 21 ] To describe the immediate impact of PPI from the user representatives’ perspective in a case study of refugee involvement in the development of mental health intervention research. …”

Section: Resultsmentioning

confidence: 99%

The experience of patient partners in research: a qualitative systematic review and thematic synthesis

et al. 2022

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Context Patient engagement in research consists in involving patients as partners across the research cycle. This practice has quickly become an international standard, with funding bodies actively encouraging it. As the increased incentive to engage patients can lead to tokenistic partnerships, it is important to consider the experiences of patient-partners. Objective To synthesize the qualitative literature on the experience of patients as partners in research. Design A systematic review of the literature with thematic synthesis was realized, guided by the framework developed by Thomas and Harden (Bmc Med Res Methodol 8: 45, 2008). Data collection A search strategy was developed to encompass keywords relating to patient-partners in research, their experience, and the qualitative nature of the target studies. 10 databases were searched using the EBSCO-host engine, along with the Scopus engine to include EMBASE. The search results were screened for the following inclusion criteria: articles written in English; articles reporting on the experience of patient-partners in research; qualitative studies or mixed-methods studies with a distinct qualitative section. Analysis Included articles were charted for general information. The CASP qualitative checklist was used for critical appraisal. The “results” section of each article was coded line by line. Codes were aggregated inductively to form descriptive themes and analytical themes, in order to synthesize the ideas found in the selection of articles. Results The initial search yielded 10,222 results. After the removal of duplicates, 5534 titles and abstracts were screened, 88 full-text reports were evaluated, and 41 studies were included. Articles reporting on these studies were published between 2005 and 2020. Seven themes emerged from the analysis: “motivations to engage in research”, “activities in patient engagement”, “structure”, “competence”, “team dynamics”, “impacts on broader life”, and “illness”. Articles reported varying degrees of perceived impact on research and satisfaction concerning the level of engagement. The importance of power differentials and team dynamics were widely stated. Conclusions Findings provide an in-depth view of the experiences of patient-partners in research. Most articles reported a generally positive experience, but challenges and pitfalls of patient engagement were identified. This will serve research teams by highlighting good practices and possible improvements.

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“…org/ and the European Young Person's Advisory Group Network (eYPAGnet) http:// eypag net. eu/ who work alongside pharmaceutical companies, academic researchers, regulatory agencies, ethics committees, and others to make sure children and families are involved in the decision-making processes [9]. The networks are renowned for working in partnership with children through the forum of a Young Person's Advisory Group (YPAG), which first emerged in 2006 in the UK [10].…”

Section: Introductionmentioning

confidence: 99%

Developing a More Tailored Approach to Patient and Public Involvement with Children and Families in Pediatric Clinical Research: Lessons Learned

Preston

Nafría

Ohmer³

et al. 2022

Ther Innov Regul Sci

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Listening to, and acting on, the voices of children and families during clinical research and innovation is fundamental to ensuring enhanced pediatric health care, medicines development, and technological advances. While this is often discussed as an important step in ensuring patient-centered care, involving children and families across the life cycle of clinical research is not currently routine. The pediatric research community needs to address how to meaningfully involve children and families if they are to succeed in designing clinical research that suits the needs of pediatric patients and their families. This paper describes how an international community working under the umbrella International Children’s Advisory Network (iCAN) and European Young Person’s Advisory Group Network (eYPAGnet) has involved children and families in the design and delivery of pediatric clinical research. It offers practical solutions through various case studies assessed against seven patient engagement quality criteria within the Patient Engagement Quality Guidance (PEQG) tool, highlighting some of the lessons learnt from involving and engaging with children and families across different stages of clinical research, including pediatric trials for drug development programs.

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A Novel Way to Engage Youth in Research: Evaluation of a Participatory Health Research Project by the International Children's Advisory Network Youth Council

Cited by 7 publications

References 0 publications

Research‐ and health‐related youth advisory groups in Canada: An environmental scan with stakeholder interviews

Research‐ and health‐related youth advisory groups in Canada: An environmental scan with stakeholder interviews

The experience of patient partners in research: a qualitative systematic review and thematic synthesis

Developing a More Tailored Approach to Patient and Public Involvement with Children and Families in Pediatric Clinical Research: Lessons Learned

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