A case of community dissemination when research is over in Malawi

1,265 views

Published on

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/

Published in: Health & Medicine, Technology
0 Comments
0 Likes
Statistics
Notes
  • Be the first to comment

  • Be the first to like this

No Downloads
Views
Total views
1,265
On SlideShare
0
From Embeds
0
Number of Embeds
5
Actions
Shares
0
Downloads
8
Comments
0
Likes
0
Embeds 0
No embeds

No notes for slide

A case of community dissemination when research is over in Malawi

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

×