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Community engagement for paediatric MDR-TB clinical trials: principles to support ethical trial implementation
G Hoddinott1, S Staples2, R Brown1
1Desmond Tutu TB Centre, Department of Paediatrics and Child Health, Faculty of Medicine, Stellenbosch University, Cape Town.
Insights
Community engagement is crucial for pediatric multidrug-resistant tuberculosis (MDR-TB) clinical trials. Four recommendations guide effective engagement with stakeholders like health workers, parents, and children for successful research.
Area of Science:
- Public Health
- Infectious Diseases
- Pediatric Research
Background:
- Paediatric tuberculosis (TB) research is advancing, offering new treatment and prevention strategies for children.
- Community engagement is vital for the success of paediatric clinical trials.
- Multidrug-resistant TB (MDR-TB) in children presents unique challenges due to its clinical profile, epidemiology, and social perceptions, complicating community engagement efforts.
Purpose of the Study:
- To reflect on experiences implementing community engagement in paediatric MDR-TB research.
- To propose recommendations for guiding community engagement in paediatric MDR-TB clinical trials.
- To highlight the importance of stakeholder collaboration in advancing paediatric TB research.
Main Methods:
- Review of diverse experiences in paediatric MDR-TB research and community engagement.
- Development of four key recommendations for effective community engagement strategies.
- Analysis of stakeholder willingness to collaborate in clinical trials.
Main Results:
- Four recommendations are proposed: 1) continuous community engagement platforms, 2) tiered TB and research literacy, 3) multiple platforms for shared interests, and 4) addressing social/structural implications of family participation.
- Community stakeholders, including health workers, parents, and children, are willing to participate in paediatric MDR-TB clinical trials.
- Effective community engagement is feasible and offers significant opportunities in paediatric MDR-TB research.
Conclusions:
- Implementing the four recommendations can enhance community engagement in paediatric MDR-TB clinical trials.
- Active collaboration with community stakeholders is essential for the advancement of paediatric TB research.
- The findings support the potential for successful community engagement in the evolving landscape of paediatric MDR-TB research.
Abstract:
The paediatric tuberculosis (TB) prevention and treatment landscape is moving into a new and exciting era, with knowledge from clinical trials offering real benefit to children. Community engagement is key to optimising the success of these trials. However, the clinical profile, epidemiology and social perceptions for paediatric multidrug-resistant TB (MDR-TB) complicate the operationalisation of this community engagement. We reflect on a diversity of recent experiences attempting to implement this type of research and the community engagement around it. We describe four recommendations and argue that these should guide the implementation of the community engagement agenda in the new landscape of paediatric MDR-TB clinical trials. Specifically, we argue for 1) dynamic, long-term continuity in community engagement platforms; 2) tiers of TB and research literacy; 3) multiple separate and joint platforms for holding 'stakes'; and 4) addressing the social/structural implications of family participation. We conclude that community-level stakeholders, such as health workers, parents and children, are willing to collaborate in paediatric MDR-TB clinical trials. Using these recommendations, there is considerable opportunity for effective community engagement in this new era of paediatric MDR-TB research.
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