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Ethics in Community-Based Research with Vulnerable Children: Perspectives from Rwanda

Author

Listed:
  • Theresa Betancourt
  • Mary C Smith Fawzi
  • Anne Stevenson
  • Fredrick Kanyanganzi
  • Catherine Kirk
  • Lauren Ng
  • Christina Mushashi
  • Justin I Bizimana
  • William Beardslee
  • Giuseppe Raviola
  • Stephanie Smith
  • Yvonne Kayiteshonga
  • Agnes Binagwaho

Abstract

A “risk of harm” protocol to identify youth in need of immediate emergency assistance in a study on mental health and HIV in Rwanda among 680 youth ages 10–17 is described. Cases are presented that describe the experience in using this protocol to ensure safety of participants, with ethical and logistical challenges considered. Among the population of the study, 3.2% were deemed “risk of harm.” The most prevalent presenting problem was non-fatal suicidal behavior (91% of risk of harm cases), with 36% having a history of a reported previous attempt. Challenges included: acute food insecurity/significant poverty; lack of support/adequate supervision from family members; family violence; alcohol abuse; and HIV-related stigma. Development of a “risk of harm” protocol and collaboration between study staff, community leadership, health authorities, and health workers are critical to ensuring participants’ safety in research among vulnerable populations.

Suggested Citation

  • Theresa Betancourt & Mary C Smith Fawzi & Anne Stevenson & Fredrick Kanyanganzi & Catherine Kirk & Lauren Ng & Christina Mushashi & Justin I Bizimana & William Beardslee & Giuseppe Raviola & Stephanie, 2016. "Ethics in Community-Based Research with Vulnerable Children: Perspectives from Rwanda," PLOS ONE, Public Library of Science, vol. 11(6), pages 1-10, June.
    • Handle: RePEc:plo:pone00:0157042
    DOI: 10.1371/journal.pone.0157042
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    References listed on IDEAS

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    1. Binagwaho, Agnes & Hartwig, Renate & Ingeri, Denyse & Makaka, Andrew, 2012. "Mutual health insurance and its contribution to improving child health in Rwanda," Passauer Diskussionspapiere, Volkswirtschaftliche Reihe V-66-12, University of Passau, Faculty of Business and Economics.
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