privacy, confidentiality, and disclosure in hiv … in hiv research: partner abuse and discordant...
Post on 01-May-2018
216 Views
Preview:
TRANSCRIPT
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”
© Claudia Moreno, July 2011 for the Fordham HIV Prevention Research Ethics Training Institute
“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.”
© Claudia Moreno, July 2011 for the Fordham HIV Prevention Research Ethics Training Institute
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
© Claudia Moreno, July 2011 for the Fordham HIV Prevention Research Ethics Training Institute
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
© Claudia Moreno, July 2011 for the Fordham HIV Prevention Research Ethics Training Institute
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)
© Claudia Moreno, July 2011 for the Fordham HIV Prevention Research Ethics Training Institute
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
© Claudia Moreno, July 2011 for the Fordham HIV Prevention Research Ethics Training Institute
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
© Claudia Moreno, July 2011 for the Fordham HIV Prevention Research Ethics Training Institute
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
© Claudia Moreno, July 2011 for the Fordham HIV Prevention Research Ethics Training Institute
Referral for Care and Support
© Claudia Moreno, July 2011 for the Fordham HIV Prevention Research Ethics Training Institute
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
© Claudia Moreno, July 2011 for the Fordham HIV Prevention Research Ethics Training Institute
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
© Claudia Moreno, July 2011 for the Fordham HIV Prevention Research Ethics Training Institute
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
© Claudia Moreno, July 2011 for the Fordham HIV Prevention Research Ethics Training Institute
top related