“We Know What We Are Talking about”: Experiences of Young People with a Chronic Condition Involved in a Participatory Youth Panel and Their Perceived Impact

Schelven, F. van; Boeije, Hennie; Inhulsen, Maj-Britt M R; Sattoe, Jane N. T.; Rademakers, Jany

doi:10.1080/13575279.2019.1680529

Cited by 10 publications

(13 citation statements)

References 27 publications

(57 reference statements)

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“…An important finding is that the self‐perceived importance of YPCC for a project is positively related to the project outcomes they experience. This is in line with studies suggesting that YPCC experience personal growth and development, when they consider their role in a project meaningful and valuable (Flicker, 2008; Franklin & Sloper, 2009; Rich et al, 2014; van Schelven et al, 2019). For example, Rich et al (2014) have argued that ‘empowering teens to influence change in the hospital brings the added benefit of their acquiring greater responsibility and increasing their confidence.’ Flicker (2008) has noted that ‘feeling like a necessary part of “something”’ can help their self‐esteem.…”

Section: Discussionsupporting

confidence: 84%

“…Central to both the program and the projects it funded was the involvement of YPCC in decision‐making. A participatory youth panel was set up by the program organization to advise the program and projects that received funding (Van Schelven et al, 2019). All projects were assigned one panel member, who informed and advised the project team and co‐monitored the project's progress.…”

Section: Introductionmentioning

confidence: 99%

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Exploring the impact of patient and public involvement with young people with a chronic condition: A multilevel analysis

Schelven

Groenewegen

Spreeuwenberg

et al. 2021

Child

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Background Patient and Public Involvement (PPI) of young people with a chronic condition (YPCC) receives increasing attention. However, evidence of its impact is lacking. This study explores the impact of PPI on outcomes of projects in health and social care, using quantitative measures. Methods Data were collected from projects funded by a 4‐year participatory program addressing the social position of YPCC. These projects addressed challenges associated with, for example, going to college with a physical disability, transitions in care and finding a job. Project coordinators filled out project reports with questions about PPI, that is, to what extent were YPCC involved, were they involved as co‐deciders and were they involved in developing the project idea. YPCC filled out questionnaires with questions about PPI, that is, the number of PPI activities and self‐perceived importance for the project. They also answered questions about the influence of the project on their social position. Based on these questions, a project outcome scale was developed. Results The data concerned 17 projects and 146 YPCC. Variation existed in project outcomes, of which 27% was associated with differences between projects. Using multilevel analyses, a significant relation was found between the self‐perceived importance of YPCC for the project and the project outcomes they experience (0.232, p < 0.01). There was no significant association with the other PPI variables. Conclusions This study provided some first quantitative evidence that PPI has a positive impact on the YPCC involved. It is suggested that the meaningfulness of PPI matters more to them than the number of activities and amount of influence provided to YPCC. We strongly recommend conducting more research that critically examines impact of PPI.

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Section: Discussionsupporting

confidence: 84%

Section: Introductionmentioning

confidence: 99%

Exploring the impact of patient and public involvement with young people with a chronic condition: A multilevel analysis

Schelven

Groenewegen

Spreeuwenberg

et al. 2021

Child

Self Cite

View full text Add to dashboard Cite

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“…For example, patients can bring unique perspectives from their 'lived experience' that researchers can use to answer more relevant research questions. This experiential knowledge of patients can improve recruitment strategies, contribute to more relevant study designs and a better translation and interpretation of the results to improve clinical practice [2][3][4][5][6][7].…”

Section: Introductionmentioning

confidence: 99%

A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: “plan, structure, and discuss”

Ham

Burgers

Sleeman³

et al. 2022

Res Involv Engagem

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Background Including the lived experience of patients in research is important to improve the quality and outcomes of cancer studies. It is challenging to include adolescents and young adults (AYAs) cancer patients in studies and this accounts even more for AYAs with an uncertain and/or poor prognosis (UPCP). Little is known about involving these AYAs in scientific research. However, by including their lived experiences during multiple phases of research, the quality of the study improves and therefore also the healthcare and quality of life of this unique patient group. We first aimed to document experiences of AYAs and researchers with AYA involvement initiatives using the Involvement Matrix and the nine phases of the research cycle. Second, we aimed to map the (expected) challenges and recommendations, according to patients and researchers, for AYA involvement in each research phase. Methods Thirteen semi-structured qualitative interviews were conducted with AYAs and researchers from February 2020 to May 2020. A thematic analysis codebook with a critical realistic framework was used to analyze the data. Results AYAs and researchers were predominantly positive about AYA involvement within six of the nine phases of research: identify and prioritize topics, develop study design, disseminate information, implement, and evaluate findings. Not all respondents were positive about AYA involvement in the following three phases: formulate research questions, conduct research, and analysis and interpretation. However, few respondents had experience with AYA-researcher collaborations in multiple phases of the research cycle. Last, the results indicate the importance of adding a role (practical support) and two phases (grant application and recruitment) to the Involvement Matrix. Conclusion Our results show the added value of AYA (with a UPCP) involvement within scientific research projects. We recommend researchers to actively think about the level and phase of collaboration prior to each research project, by involving and brainstorming with AYAs at the conception and throughout research projects. Besides, to enhance fruitful participation, we suggest thoroughly discussing the pros and cons of collaboration for each phase together with AYAs via the proposed Involvement Matrix to support transparency. We recommend to report experiences, choices, and results of AYA involvement.

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“…PPI can take many forms, with YPCC being involved in various ways and in several stages of various types of research 4,5 . The literature on PPI of YPCC provides a plethora of examples, from intensive partnerships with a few YPCC 6–8 to consultations with advisory panels 9,10 . The flexibility of PPI makes it possible to adapt it to the research and the people involved 11 .…”

Section: Introductionmentioning

confidence: 99%

“… 4 , 5 The literature on PPI of YPCC provides a plethora of examples, from intensive partnerships with a few YPCC 6 , 7 , 8 to consultations with advisory panels. 9 , 10 The flexibility of PPI makes it possible to adapt it to the research and the people involved. 11 At the same time, it complicates PPI practice, since there is no ‘blueprint’ for doing it right.…”

Section: Introductionmentioning

confidence: 99%

Evaluating meaningful impact of Patient and Public Involvement: A Q methodology study among researchers and young people with a chronic condition

Schelven

Boeije

Rademakers

2021

Health Expectations

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Introduction Although Patient and Public Involvement (PPI) of young people with a chronic condition (YPCC) is receiving increasing attention, evidence of impact is lacking. This is partly due to inadequate understanding of what meaningful impact entails. This study aimed to gain an in‐depth understanding of researchers’ and YPCC's perspectives on meaningful impact. Methods We conducted a Q methodology study in a group of 26 researchers and a group of 20 YPCC with experience in PPI. Participants ranked statements about impact (e.g., ‘YPCC acquire new knowledge and skills’) based on their agreement with them. During interviews, they reflected on their rankings (Q sorts). Factor analysis was conducted to identify similar patterns in the individual Q sorts. The interviews were used to determine and interpret the final factor solution. The resulting factors represented distinct perspectives on meaningful impact. Results Four distinct perspectives on meaningful impact of PPI were identified. Two were predominantly based on the Q sorts of researchers, for example improving research quality and facilitating dialogue and understanding, and two on the Q sorts of YPCC, for example achieving equality and inclusivity and doing justice to YPCC's rights. The factors were defined by 37 Q sorts (80%); 9 Q sorts did not load significantly on any of the factors. Conclusion The results indicate that researchers and YPCC can have different views about the meaningful impact of PPI. The perspectives identified here can serve as an aid when discussing these different views and formulating operational indicators of impact. Patient or Public Contribution An adolescent with a chronic condition was involved in the early phases of this study. She helped in formulating the statements and recruiting YPCC.

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“We Know What We Are Talking about”: Experiences of Young People with a Chronic Condition Involved in a Participatory Youth Panel and Their Perceived Impact

Cited by 10 publications

References 27 publications

Exploring the impact of patient and public involvement with young people with a chronic condition: A multilevel analysis

Exploring the impact of patient and public involvement with young people with a chronic condition: A multilevel analysis

A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: “plan, structure, and discuss”

Evaluating meaningful impact of Patient and Public Involvement: A Q methodology study among researchers and young people with a chronic condition

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