Privacy, Confidentiality, and Disclosure in HIV … in HIV Research: Partner Abuse and Discordant Couples ... story and be able to calm the person ... handle these events to be ready

Privacy, Confidentiality, and Disclosure in HIV Research: Partner

Abuse and Discordant Couples Claudia L. Moreno, Ph.D., MSW

Associate Professor, Graduate School of Social Service, Fordham University

© Claudia Moreno, July 2011 for the Fordham HIV Prevention Research Ethics Training Institute

Some Stories   ”You know and sometimes like I said when I sold that ring

I knew I was gonna get hit and I was prepared to get hit three or four times you know because but as my conscious start bothering me when I do something bad to hurt him and I stop doing shit like this. But that’s my first time doing that. After I sold that ring”


  “And like today - these days too. Like I come back from the club you know you be drunk, be high you know what I’m saying…. Stoned and shit you pass out you know and I’ll wake up and he’ll be all over me and I literally have to push him off of me and tell him quit doing that - that’s not Right that you doing that to me…. You violating me all together. I don’t want to be with you like that you understand.”


Ethical Principals and Challenges in Doing Research with people at risk of violence

  We often encounter in research projects issues of confidentiality, problems of disclosure, and the need to ensure adequate informed consent.

  Problems arise during the course of the research project—problems and issues not anticipated

  Some researchers avoid this area of research because the IRB is very time consuming in assuring that all the issues are covered


WHO ethical and safety recommendations for domestic violence research   A. The safety of respondents and the research team is paramount, and should guide

all project decisions.   b. Prevalence studies need to be methodologically sound and to build upon current

research   experience about how to minimize the under-reporting of violence.   c. Protecting confidentiality is essential to ensure both women’s safety and data

quality.   d. All research team members should be care fully selected and receive specialized

training and on-going support.   e. The study design must include actions aimed at reducing any possible distress

caused to the participants by the research.   f. Fieldworkers should be trained to refer women requesting assistance to available

local services and sources of support. Where few resources exist, it may be necessary for the study to create short-term support mechanisms.

  g. Researchers and donors have an ethical obligation to help ensure that their findings are properly interpreted and used to advance policy and intervention development.

  h. Violence questions should only be incorporated into surveys designed for other purposes when ethical and methodological requirements can be met.

  ● Available at:

  http://www.who.int/gender/documents/violence/who_fch_gwh_01.1/en/index.html © Claudia Moreno, July 2011 for the Fordham HIV Prevention Research Ethics Training Institute

Ethical Concerns


Minimizing Harm

  When doing research studies in this area the potential to inadvertently cause harm or distress. Especially if the perpetrator finds out that the person has been talking about others about the relationship.

  The potential for the research to be abuse by the partner when talking about the HIV intervention, using condoms, talking about social histories, STIs, etc.

  The potential to become distressed as the result of discussing events—having to remember and recall painful events, (re-victimization)


Ensuring Participant’s Safety   Engaging in the study about traumatic events without

taking safety precautions if the participant is at risk or becomes distressed during an interview.

  Not ensuring that the participant might be at-risk for violence as a result of the interview

  Be clear to mention in your consent form that specific questions about violence will be discussed and the potential to be distressed

  In join interviews or HIV interventions with discordant couples the issue of disclosure might come-up.

  Take precautions to deal with potential safety issues


Protecting Privacy and Confidentiality   Ensure privacy during the interview (no children present).

Provide child care to keep children busy   If you cannot ensure privacy, reschedule an interview   Confidentiality has its limitations, these limitations hsould

be included in the consent form


Minimizing Participant’s Distress   In the consent form, include the potential for distress and

the precautions to be taken in case of need   Interviewers need to be trained to be aware of how some

questions can cause distress in the participants and how to best respond, when distress occurs

  Allowing participants to take some time in disclosing the story and be able to calm the person if necessary. Make plans with the agency, center for an experience person to handle these events to be ready if needed during an interview


Referral for Care and Support


  According to the WHO guidelines, researchers have an obligation for providing, as a minimum standard, referrals for services and care facilities, emergency lines and other pertinent services that deal with persons in distress and also partner violence services.

  Develop a resource directory that can be available during each interview/focus group. Mention in the consent form that this directory is available


Minimize Harm to Researchers   Listening to stories of abuse is not an easy task for any

interviewer.   Provide debriefing groups and discussion groups   Provide training on partner abuse and trauma   Danger can include destruction of physical Property during the interview, harm towards the Researcher, etc. Interviewers traveling to dangerous neighborhoods


Summary   We learn as we go, be a reflective learner, learn from your

mistakes!   Research on violence can be done with full respect to

ethical standards and considerations for proper care and resources

  We have an obligation to carefully weight the risks and benefits

  Take care of you as a research and look for assistance if necessary


Thank You!


Documents

Privacy, Confidentiality, and Disclosure in HIV … in HIV Research: Partner Abuse and Discordant Couples ... story and be able to calm the person ... handle these events to be ready