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A case of community dissemination when research is over in Malawi
 

A case of community dissemination when research is over in Malawi

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Presented by Joseph Mfutso-Bengo (Center of bioethics for southern & Eastern Africa-CEBESA) at the Public Engagement Workshop, 2-5 Dec. 2008, KwaZulu-Natal South Africa, ...

Presented by Joseph Mfutso-Bengo (Center of bioethics for southern & Eastern Africa-CEBESA) at the Public Engagement Workshop, 2-5 Dec. 2008, KwaZulu-Natal South Africa, http://scienceincommunity.wordpress.com/

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    A case of community dissemination when research is over in Malawi A case of community dissemination when research is over in Malawi Presentation Transcript

    • A case of community dissemination when research is over in Malawi Joseph Mfutso-Bengo Center of bioethics for southern & Eastern Africa-CEBESA
    • Introduction
      • Engaging communities in biomedical research is an ethical requirement for research involving human subjects (CIOMS, Nuffield Council on Bioethics).
      • Community engagement (CE) is a critical aspect of planning & implementing biomedical research.
      • Disseminating results to research communities after research is over is one of the import aspects of CE.
    • Introduction continues
      • To comply with this requirement, CEBESA organized dissemination workshops btwn 10th March & 17 th April, 2008.
      • Workshops were held in Maziabango, Mpemba and Bangwe in BT & UNC Tidziwe Centre in LL.
      • Were attended by 32 health workers/research staff & 128 research participants including community leaders.
    • Objectives of dissemination workshops
      • To disseminate Phases 1 & 2 results of Bioethics Research Project to research participants & research staff in Madziabango, Mpemba, Bangwe in BT & UNC Tidziwe Centre in LL.
      • To discuss results with research participants & health/research staff of the 3 HCs & UNC.
      • To encourage further discussion on major challenges in conducting biomedical research in areas with limited resources.
    • Analysis of the workshops
      • Workshops were a good experience.
      • Was a wonderful reunion with research participants & research staff.
      • Participated actively in the meetings - Made comments & asked questions.
      • Commended Bioethics team for remembering them & being exemplary in disseminating results.
    • Issues that came out
      • Social responsibility of researchers
        • -Participants noted that most of the researchers that conduct research in their communities & HC don’t care about their social problems - they leave the communities/HC as worse as before
        • -Called on researchers to be very responsive to the needs of communities/HC where they conduct research e.g.
          • dig boreholes in communities where water is a problem
          • Donate drugs to the HC
          • Give a hand in providing services at HC
    • Issues that came out
      • Social responsibility of researchers
        • -Participants noted that most of the researchers that conduct research in their communities & HC don’t care about their social problems - they leave the communities/HC as worse as before
        • -Called on researchers to be very responsive to the needs of communities/HC where they conduct research e.g.
          • dig boreholes in communities where water is a problem
          • Donate drugs to the HC
          • Give a hand in providing services at HC
    • Why do people refuse to participate in research?
              • Failure to follow traditional customs
              • Fear of strangers
              • Superstition and blood drawing
              • Poor informed consent procedure
              • Lack of study benefits
              • Ignorance of health research
              • Lack of cultural sensitivity
              • Poor timing
    • Issues that came out continued
      • Sensitization of communities
      • - Participants complained that some researchers don’t sensitize communities before they conduct their research (in the communities or at the HC).
      • - Researchers just consult Chiefs and then start doing their research.
      • -The chief is not the only stakeholder
      • -Felt this was unwelcome & called on researchers to engage communities b4 conducting research in their communities/HC.
    • Issues that came out continued
      • Desperation of research participants to access medical treatment
        • -Participants noted that most research participants choose to participate in research out of desperation for medical treatment & hence, don’t pay attention to consent procedures
        • -
        • -Recommended that consent process should be ongoing throughout research
    • Issues that came out continued
      • Dissemination of research results
        • - Participants appreciated the need to give a feedback of research results to participants
        • - Requested that it should become a norm for researchers to disseminate research results after research is over
        • - Feel it’s their right to know research results
        • - Results of research that takes long to complete to be disseminated in phases
    • Rules of community engagement
      • Not every interested person is a stakeholder
      • The community can help identify real stakeholders
      • The bigger the risk and research benefit the bigger the need to engage the community
    • Conclusion continues
      • Enlightened by the outcome of the workshops, CEBESA has developed 4 benchmarks for CE
      • The benchmarks are intended to strengthen mutual understanding btwn communities & research institutions/researchers
      • Benchmarks include;
        • Community Consultation/permission
        • Community Sensitization
        • Community Involvement / Ownerhsip
        • Community Feedback/ Dissemination of research results
    • Part of the CEBESA Team
    • Thandi distributing the handouts
    • Participants looking at the leaflets
    • Mr. Masiye stressing a point
    • Part of the research staff that attended one workshop
    • Gratitude
      • Thank you all for listening!!