Meaningful Engagement of Persons Affected by Leprosy in Research: An Exploration of Its Interpretation, Barriers, and Opportunities
Abstract
:1. Introduction
The Concept of Patient Engagement
2. Materials and Methods
2.1. Study Design
2.2. Participant Engagement
2.3. Study Population and Sample Size
2.4. Sampling Strategy
2.5. Data Collection
2.6. Data Analysis
3. Results
3.1. Meaningful Engagement
3.2. Importance and Relevance of Engagement
“I think that for any problem, anything in life, we need different point of views”(Expert in PPI, but also expert-by-experience, Asia)
“They know the right questions to ask, they know how to ask them. They have the right language, and people, their peers, that they would interview [and] would open up far more readily than [to] a complete outsider”(Expert in PPI, Oceania)
“This is very important. Why? He who wears the shoes knows where it pinches”(Expert-by-experience, Africa)
“Research contributes to show the capacity of the persons affected in different aspects of daily life and society, not only as being observed, but how to transform reality and produce knowledge”(Expert-by-experience, Latin America)
“Being engaged in a research project could be a life changing event”(Expert-by-experience, Asia)
3.3. Engagement across Research Areas
“The patients that are involved in my projects don’t ask me for feedback because my research is so basic that it is impossible [for them] to give feedback”(Leprosy researcher, Brazil)
“It is like democracy, you can’t pose democracy; democracy has to be born from within”(Expert in PPI, Oceania)
3.4. Levels of Engagement across Research Stages
3.5. Barriers to Engagement in the Leprosy Context
“When you are applying for funds in the international context, you have to speak very good English, you have to write very good research questions, the methods should be very precise and clear. The project expectations and plan should be met, and that is very challenging to [uneducated] persons affected by leprosy”(Leprosy researcher, social sciences, Asia)
“You have to have some credentials before you are being assigned to any research project and most of persons affected by Hansen’s disease [leprosy] lack education”(Expert-by-experience, Africa)
“They do not want to come openly since the stigma, the discrimination still exists. These are the reasons I think, that people affected are not involved in research”(Expert-by-experience, Asia)
“And then all of a sudden there is another person, who is also experienced, but has a different perspective”(Leprosy researcher, social sciences, but also expert-by-experience, Latin America)
3.6. Opportunities for Enhancing Engagement in the Leprosy Context
“It is good to enhance that capacity, their capacity, so that they can join with us”(Expert-by-experience, Asia)
“You want to reach people with influence, and I think that is really important. Well, I think I am little, not cynical, but I am a little bit “Oh, we need to let their voices be heard.” I think voices are being heard, but they have to be heard by the right people. And that is what is really important, they have to [be] heard by people that can implement changes that will be possible”(Expert in PPI, Oceania)
“It depends on the context, how do local people see, feel, understand and tackle or respond to the leprosy affected persons, this is the context. And that can vary from one society to another society. Not only that, it changes over the period of time”(Leprosy researcher, social sciences, Asia)
4. Discussion
Strengths and Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Exploratory Phase | In-Depth Phase | ||
---|---|---|---|
(a) Key Informant Interviews (n = 6) | (b) Survey (n = 21) | (c) Key Informant Interviews (n = 7) | |
Gender, n | N.A. * | ||
Female | 3 | 3 | |
Male | 3 | 4 | |
Origin, n | |||
Asia | 3 | 10 | 3 |
Latin America | 1 | 3 | 3 |
Africa | 1 | 2 | 1 |
Europe | 0 | 3 | 0 |
Oceania | 1 | 2 | 0 |
United States | 0 | 1 | 0 |
Experience **, n | |||
Researcher | 1 | 21 | 7 |
Expert-by-experience (i.e., person affected by leprosy) | 5 | - | 1 |
Expert in public and patient involvement in research | 2 | - | 0 |
Research area ***, n | N.A. * | ||
Social sciences or public health | 8 | 4 | |
Laboratory/basic sciences | 4 | 2 | |
Health systems research | 3 | 0 | |
Translational/applied field research | 3 | 1 | |
Clinical research | 2 | 1 | |
Epidemiology or operational research | 1 | 1 |
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de Groot, L.; van ‘t Noordende, A.T.; Duck, M.; Oraga, J.; Rai, S.S.; Peters, R.M.H.; Veldhuijzen, N. Meaningful Engagement of Persons Affected by Leprosy in Research: An Exploration of Its Interpretation, Barriers, and Opportunities. Trop. Med. Infect. Dis. 2023, 8, 52. https://doi.org/10.3390/tropicalmed8010052
de Groot L, van ‘t Noordende AT, Duck M, Oraga J, Rai SS, Peters RMH, Veldhuijzen N. Meaningful Engagement of Persons Affected by Leprosy in Research: An Exploration of Its Interpretation, Barriers, and Opportunities. Tropical Medicine and Infectious Disease. 2023; 8(1):52. https://doi.org/10.3390/tropicalmed8010052
Chicago/Turabian Stylede Groot, Laura, Anna T. van ‘t Noordende, Mathias Duck, Joshua Oraga, Sarju Sing Rai, Ruth M. H. Peters, and Nienke Veldhuijzen. 2023. "Meaningful Engagement of Persons Affected by Leprosy in Research: An Exploration of Its Interpretation, Barriers, and Opportunities" Tropical Medicine and Infectious Disease 8, no. 1: 52. https://doi.org/10.3390/tropicalmed8010052
APA Stylede Groot, L., van ‘t Noordende, A. T., Duck, M., Oraga, J., Rai, S. S., Peters, R. M. H., & Veldhuijzen, N. (2023). Meaningful Engagement of Persons Affected by Leprosy in Research: An Exploration of Its Interpretation, Barriers, and Opportunities. Tropical Medicine and Infectious Disease, 8(1), 52. https://doi.org/10.3390/tropicalmed8010052