Using children and young people as advocates to inform research design

Graham, Naomi; Mandy, Anne; Clarke, Channine; Morriss-Roberts, Christopher

doi:10.1177/0308022617725491

Cited by 8 publications

(20 citation statements)

References 17 publications

(37 reference statements)

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“…Nineteen were qualitative, 5,7,9,25‐40 two quantitative 41,42 and two mixed methods 43,44 . In fifteen studies, PPI with YPCC was the outcome of interest 5,7,9,25,28‐32,35,37‐40,42 . In eight studies, it was applied as study method 26,27,33,34,36,41,43,44 .…”

Section: Resultsmentioning

confidence: 99%

“…In eight studies, it was applied as study method 26,27,33,34,36,41,43,44 . None of the studies were published before 2000, eight between 2001 and 2010, 5,7,25,29,30,39,41,42 and fifteen between 2011 and 2018 9,26‐28,31‐38,40,43,44 …”

Section: Resultsmentioning

confidence: 99%

“…One project was addressed in two studies, 27,28 and three studies described findings from multiple projects 7,30,42 . Of the nineteen unique projects, nine were research projects, 27‐29,31‐33,36,38,39,41 six were implementation projects, 25,26,35,37,40,43 and four combined elements of both research and implementation 5,9,34,44 . The studies addressing multiple projects provided results on involvement in implementation projects 7,30,42 …”

Section: Resultsmentioning

confidence: 99%

“…YPCC were aged 4‐28 years; five studies (also) included data on YPCC younger than 12 30,35,36,40,42 and three on YPCC older than 25 26,32,41 . Six studies focused on young people with one specific condition, 9,26,29,31,36,38 such as diabetes, renal failure and cystic fibrosis, but most addressed several conditions or a general group of conditions, 7,25,27,28,30,32,33,35,39‐44 such as physical impairments or learning disabilities. In some studies, YPCC were included based on additional criteria, other than age and chronic condition, such as previous participatory experiences, educational level and skills and abilities.…”

Section: Resultsmentioning

confidence: 99%

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Patient and Public Involvement of young people with a chronic condition in projects in health and social care: A scoping review

Schelven

Boeije

Mariën

et al. 2020

Health Expectations

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Background The involvement of young people with a chronic condition in research and implementation projects in health and social care receives growing attention. Yet, there is a lack of conceptual clarity of this so‐called ‘Patient and Public Involvement’ (PPI) and methods to systematically evaluate it are absent. This scoping review aimed to gain insight into developments in the existing literature on PPI of young people with a chronic condition by mapping reported definitions, goals, activities, experiences and impact. Methods We conducted searches in Cinahl, Embase, PsycINFO, PubMed and Scopus. Included articles described involvement of young people with a chronic condition in research and implementation projects, contained empirical data, were written in English and were published after 1990. Two researchers independently carried out the data extraction. Results Twenty‐three studies out of 4993 initial hits met the inclusion criteria. We found great variation in definitions and operationalizations of PPI. Reflections of authors on the process of PPI and its impact were similar and did not change over the years. Discussion and conclusion Limited progress in the evidence base of the impact of PPI with young people with a chronic condition was found. Over the years, studies continue to report similar experiences and challenges. In order to move forward, we suggest future research to make connections to existing work instead, to include thorough descriptions of what is understood by PPI and how this is translated into activities, and to use systematic and objective, but also flexible, methods to measure its impact.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

Patient and Public Involvement of young people with a chronic condition in projects in health and social care: A scoping review

Schelven

Boeije

Mariën

et al. 2020

Health Expectations

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“…Despite the realisation that the perspectives of young people with a chronic condition should not be neglected in research and innovation projects addressing issues that concern them, many young people and project teams are struggling how to shape their collaboration. Substantive issues include, for example, how to achieve meaningful impact on the relevance and quality of research and innovation projects [6,15] and how to handle differences in ideas and opinions [16,17]. More practical challenges were observed as well.…”

Section: Introductionmentioning

confidence: 99%

Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program

et al. 2020

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Plain English summary Background Young people with a chronic condition are increasingly involved in doing research and developing tools and interventions that concern them. Working together with patients is called Patient and Public Involvement (PPI). We know from the literature that PPI with young people with a chronic condition can be challenging. Therefore, it is important that everyone shares their lessons learned from doing PPI. Aim We want to share our lessons learned from a large program, called Care and Future Prospects. This program helps young people with a chronic condition to, for example, go to school or to find a job. It funded numerous projects that could contribute to this. In all projects, project teams collaborated with young people with a chronic condition. What did we do We asked young people with a chronic condition and project teams about their experiences with PPI. Project teams wrote reports, were interviewed, and filled out a tool called the Involvement Matrix. Young people filled out a questionnaire. Findings In the article, we present our lessons learned. Examples are: it is important to involve young people with a chronic condition from the start of a project and everyone involved in a project should continuously discuss their responsibilities. We provide practical tips on how young people with a chronic condition and project teams can do this. A tip for young people is, for example: ‘discuss with the project team what you can and want to do and what you need’. An example of a tip for project teams is: ‘Take time to listen attentively to the ideas of young people’. Abstract Background The Patient and Public Involvement (PPI) of young people with a chronic condition receives increasing attention in policy and practice. This is, however, not without its challenges. Consequently, calls have been made to share lessons learned during PPI practice. Methods We share our lessons learned from a large participatory program, called Care and Future Prospects. This program aims to improve the social position of young people aged 0–25 with a physical or mental chronic condition by funding participatory projects. We have drawn our lessons from 33 of these projects, using four data sources. One data source provided information from the perspective of young people with a chronic condition, i.e. questionnaires. Three data sources contained information from the perspectives of project teams, i.e. project reports, case studies of projects and Involvement Matrices. For most of the projects, we have information from multiple data sources. Results We have combined the findings derived from all four data sources. This resulted in multiple lessons learned about PPI with young people with a chronic condition. Those lessons are divided into six themes, including practicalities to take into account at the start, involvement from the start, roles and responsibilities, support, flexibility and an open mind, and evaluation of process and outcomes. Conclusions The lessons learned have taught us that meaningful PPI requires effort, time and resources from both young people and project teams, from the beginning to the end. It is important to continuously discuss roles and responsibilities, and whether these still meet everyone’s needs and wishes. Our study adds to previous research by providing practical examples of encountered challenges and how to deal with them. Moreover, the practical tips can be a valuable aid by showing young people and project teams what concrete actions can support a successful PPI process.

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Positive Impacts of Adolescent Involvement in Health Research: An Umbrella Review

Warraitch,

Wacker,

Biju

et al. 2024

Journal of Adolescent Health

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Using children and young people as advocates to inform research design

Cited by 8 publications

References 17 publications

Patient and Public Involvement of young people with a chronic condition in projects in health and social care: A scoping review

Patient and Public Involvement of young people with a chronic condition in projects in health and social care: A scoping review

Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program

Positive Impacts of Adolescent Involvement in Health Research: An Umbrella Review

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