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Elder Abuse Workshop: Challenges and Solutions in Conducting Elder Abuse Research

Introduction

Dr. Sid Stahl introduced the discussion by outlining some of the issues that he has seen affect grantees:

• Certificate of Confidentiality: Grantees should consider this for the protection it gives from reporting what is typically required to be reported.
• Obtaining IRB approval: IRBs are not as familiar with this type of research and consequently the process can be time-consuming.
• Multiple IRBs: Often research involves multiple agencies with multiple IRBs, each with its own set of rules. Be prepared for this process.
• Study section reviews: Not all study section reviewers see the innovative nature of the research.
• Writing the grant: Choose your words carefully. The words "descriptive" and "exploratory" can be the kiss of death with some funders.
• Qualitative research: Research in elder mistreatment is in its earliest stages, and consequently qualitative research and mixed methodologies are being used. NIA and NIH do have interest and have funded qualitative research.
• Cultural differences in elder mistreatment: There is a desperate need for research in this area. It is hard to do, but it is essential.
• Co-funders: It is very difficult to find co-funders for elder mistreatment research, except for DOJ and the Archstone Foundation. That is a problem because co-funders can help make up for budget shortages.

Question/Answer/Comment Period

Reporting and Certificates of Confidentiality

Dr. Lori Jervis brought up a concern about mandatory reporting. Dr. Fred Newman stated that in his Miami project they do not collect names or enough information to identify the participant, including not requiring the participant to give an accurate name. If, at the end of the data collection, the participant wants to go to APS, forms are available. Dr. Newman stressed the importance of getting the Certificate of Confidentiality and maintaining a steady collaboration with the IRB on this issue. Dr. Stahl recommended that Dr. Jervis confer with her IRB about her reporting concerns.

Ms. Catherine McNamee explained that researchers who accept DOJ funding are bound by the DOJ privilege requirements and that Certificates of Confidentiality do not apply. The researchers must maintain the confidentiality of identifying information, and if elder abuse is discovered they cannot report it. Researchers are only allowed to report in cases of immediate harm to the participant or others. Researchers are allowed to provide help to the participant by giving help-seeking information, counseling referrals and phone numbers. As DOJ has gotten involved with elder abuse research, other alternatives have been developed, such as allowing researchers to seek approval from the IRB and NIJ for a second informed consent form to get consent for reporting suspected abuse discovered during an interview. Dr. Solomon Liao, who has been involved in alternative consent, stated that although his research involves going into the best facilities and therefore does not expect to find abuse to report, there was an ethical problem with not being able to report if necessary. Moreover, the IRB said that one cannot consent someone to do what you are required by law to do. Our solution was to use a form separate from the research informed consent form stating that researchers are mandated reporters and allowed to do so. Interestingly, the facilities were more concerned about this than the participants or their families. Dr. Liao felt confident that the participants understood what they were signing because in California they use a process of evaluation of capacity to consent. Dr. Larry Branch reported that his university gets 60 percent of its funding from NIH, and the IRB follows the NIH standards regardless of whether his funding is from NIJ. His approach is to emphasize that his interviewers are not trained professionals and therefore are not subject to the same professional reporting requirements. They do make available the abuse hotline number. Dr. Carrie Mulford added that if an IRB tells an NIJ-funded researcher that a Certificate of Confidentiality is needed, the researcher will be told to inform the IRB that it is not required. Dr. Ron Acierno noted that even though a researcher has federal protection from reporting, researchers who are clinicians stand to lose their licenses and could be sued. Because participants in his studies are identified by phone number and address, Dr. Acierno reviewed the three-step process his researchers use: 1) see if the participants will report if they think it will happen again, 2) see if a non-offending person is available, and 3) make the report on the basis of imminent harm to self or others. His group follows state law regarding violence reporting. Dr. Alex Crosby stated that in the CDC epidemiological studies they are gathering historical information from the past 12 months, so the abuse is not necessarily ongoing from their standpoint.

Conference on Ethical Issues in Elder Abuse

Dr. Liao asked Dr. Stahl about the possibility or feasibility of sponsoring a conference on ethical issues in elder abuse. Dr. Stahl stated that this might be done through an NIA R13 conference grant. He urged anyone interested in being the PI (principal investigator) to apply. He agreed that there is a great need to educate IRBs in this area and suggested that NIJ might be interested in cosponsoring such a conference.

IRB Issues

Dr. Pam Teaster asked about the IRB process when one is working in multiple states. Dr. Shelly Jackson replied that the process is laborious in multistate research because of having to deal with multiple IRBs. She noted that for one study it took her 18 months to gain approval.

Dr. Acierno noted that when an IRB seems to consider research a problem, a good question to pose is, "Is the situation better or worse because of the research?" Most often it is better because now the participants have received information about reporting and that means that the situation is improved.

Cooperation/Partnering with Agencies

Dr. Scott Beach described his efforts to get help from AAA directors to provide names of persons for his researchers to call for an in-home provider survey. The county director sent a letter of support for this approach, and incentives ($50 to directors, $5 to interviewees) were offered. After funding for the project was received, the researchers encountered resistance from the directors that revolved around mandatory reporting, as the researchers are non-mandatory reporters. Despite explanations that this was an anonymous project that was separate from APS with aggregated statistics, it was difficult to gain cooperation. The event data collected could have been helpful to the AAA with training, but because there was not full support, only 500 surveys were sent and about 200 responses were received. Ms. Stephanie Whittier, with AOA (Administration on Aging), stated that although she was not sure that her office could have been of help, it would have been worth calling. She noted that training caseworkers is a high priority because of the responsibility to be sure that people are safe. People often misunderstand mandatory reporting issues, and she offered the help of her office in trying to intercede and make them feel more comfortable. Dr. Beach noted that they did their work in an adjacent county with no problem and that the positive response was, "our voices are never heard."

Dr. Laura Mosqueda stated that she counts on APS to help with case finding, and the caseworkers will do so (engage in case finding) when reassured about confidentiality. The real problem has been with the state and university lawyers, who can significantly delay projects. Ms. Lori Stiegel suggested that rather than blame the lawyers, tell funders that if they want research done that involves using APS workers, they should think about allowing a sufficient time frame to write the proposal.

Dr. Jackson reported having difficulty getting cooperation from caseworkers. Dr. Mosqueda replied that she had good results and routinely gives caseworkers Starbucks cards because it is important to thank them and try to keep the workload associated with the research request as low for them as possible. Dr. Jackson noted that in Virginia she is not allowed to give APS workers any compensation, even of a token variety. Dr. Georgia Anetzberger reported no difficulty with APS workers and asked Ms. Quinn about the effect of the NAPSA (National Adult Protective Services Association) committee on research. Ms. Quinn replied that so far there had only been two calls, so there is nothing to report. Dr. Mosqueda stressed the importance of involving the caseworkers in the formulation of the research and making sure that the results are presented to them so that they understand the relevance of the research and realize that their contribution is critical, not just something that is more work for them. Ms. Quinn agreed and suggested coming up with an official policy for this support. She noted that APS is so fragmented that often everything depends on the local supervisor. She added that we train APS workers so much about confidentiality that they forget they can ask for a client's permission to refer them to a program. Ms. Connolly suggested that because APS workers can be so helpful in research, it is important to make clear to them what can be accomplished through research and how it can help them do their jobs. Dr. Teaster noted that sometimes the results of the research are not good news for APS workers, so it is necessary to give back beyond just the published article. Ms. Whittier agreed with being cognizant of the effect of the research on the APS workers. Dr. Mosqueda cautioned that we can't not do research just because it might result in bad news. Such research needs to be done sensitively, and if there is bad news, it must be communicated as supportively as possible. Researchers cannot shrink from this responsibility.

Consent/Assent Issues

Dr. Teaster recounted a study in which she interviewed truly adjudicated incapacitated persons. She wondered what might be the best strategies in this situation. In her national study she got the consent of a public guardian to interview the participant, and she also wrote an assent for the participant. One of her concerns was whether for incapacitated persons who crave company, the interview itself implicated coercion because the interviewer was providing company. Dr. Madelyn Iris observed that the interviewer must constantly assess assent during the interview of mentally incapacitated persons, despite the fact that they signed the form, and evaluate by the participants' actions as well as their words whether they are no longer assenting to the process. When that happens, the interviewer must be responsive to this and walk away.

Dr. Nina Kohn asked how much reliance should be put on the guardian's consent, especially if it is not in the best interest of the ward. She stated that she would be concerned about research based only on the guardian's consent. Dr. Kate Wilbur noted that one could consent a ward or conservatee to see if they understand. They have a right to participate in research and have their voices heard. Ms. Naomi Karp noted a preference for the combination of consent from the guardian and assent from the ward. She suggested that there should be a more limited form of guardianship because some people who have guardians are still capable of making decisions.

Dr. Crosby commented on situations where research functions as an intervention, recalling that while doing focus groups on youth suicide, his researchers found that engaging youths in this conversation brought suicide to the surface and allowed for public and community discussion to address the issue in a more effective way.

The meeting was adjourned at 5:00 p.m.