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. 2022 Apr;25(2):712-720.
doi: 10.1111/hex.13418. Epub 2021 Dec 28.

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

Femke van Schelven  1 , Hennie Boeije  1 , Jany Rademakers  1   2
Affiliations

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

Femke van Schelven et al. Health Expect. 2022 Apr.

Abstract

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.

Keywords: Q methodology; adolescence; chronic disease; impact; involvement; meaningful; patient participation.

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Conflict of interest statement

The authors declare that there are no conflict of interests.

Figures

Figure 1
Figure 1
Q sort table
See this image and copyright information in PMC

References

    1. Hart R Children's Participation: From Tokenism to Citizenship. UNICEF; 1992.
    1. INVOLVE . What is public involvement in research? Accessed July 23, 2020. https://www.invo.org.uk/find-out-more/what-is-public-involvement-in-rese...
    1. Brady L‐M, Preston J. How do we know what works? Evaluating data on the extent and impact of young people's involvement in English health research. Res All. 2020;4(2):206. 10.14324/RFA.04.2.05 - DOI
    1. van Schelven F, Boeije H, Mariën V, Rademakers J. Patient and Public Involvement of young people with a chronic condition in projects in health and social care: a scoping review. Health Expect. 2020;23:789‐801. 10.1111/hex.13069 - DOI - PMC - PubMed
    1. Staley K. ‘Is it worth doing?’ Measuring the impact of patient and public involvement in research. Res Involv Engagem. 2015;1(1):1‐10. 10.1186/s40900-015-0008-5 - DOI - PMC - PubMed