Abused Adults with Diminished Capacity

Prior to reading this section, review Including a Risk-Sensitive Population for general guidelines about including risk-sensitive populations and Participants with Diminished Capacity to Consent for general information about this population including guidance about the consent process. 

Studies can focus on abused adults with diminished capacity, they can include abused adults in the study but abuse is not the topic of the study, or the researcher inadvertently learns of adult abuse during his interaction with the participant. For the first two scenarios, the Board will want to know:

  • What is your recruitment and consent process? Is there a potential that the legally authorized representative is also an abusive caregiver? 
  • Is there a potential that the subject matter could be upsetting or trigger additional abuse?
  • If you obtain information about illegal behaviors, how will you handle that information? 
  • If you learn of a situation that is threatening to a participant, how will you handle reporting the incident? 

Whether you intend to study abuse or not, if your study involves adults with diminished capacity, especially if you are working intimately with them, there is always the possibility that you could discover evidence of abuse. It is important to make yourself aware of the signs of abuse, your reporting responsibilities, and where to report any suspicion. If you are working with an at-risk population, you will need to demonstrate that you are qualified and capable of working with this population. 

In addition to reporting abuse to the appropriate authorities, you may need to report the incident to the IRB-SBS as an Unexpected Adverse Event. Please see Unexpected Adverse Events for more information.

Including Abused Adults with Diminished Capacity in a Study

Any adult who has lost (or in some cases never had) the ability to consent due to their mental capacity belongs in this category. Often these adults are under the care of a family member and/or live in a care facility. These individuals are vulnerable to abuse because they are either unable to advocate for themselves or unwilling because the abuser is also their caregiver. Issues such as consent become more complex (do you seek consent from the caregiver who might be the potential abuser?) and talking to the adult about his or her situation may be upsetting (or even impossible depending on the capacity of the adult). If the adult is still in the care of the abuser, the adult may be in a harmful and possibly life threatening situation. Depending on your relationship with the participant, you may be legally obligated to report any abuse, which will also compromise confidentiality. When you construct your study, it is important to think through every detail and to carefully weigh the impact you will have on the adult’s life.

Consent Process

For studies involving adults with diminished capacity to consent, it is important to verify first that the adult does not have the capacity to consent. See the Assessing Capacity to Consent section for more information. If the adult does not have the capacity to consent, they will need a surrogate to consent. This individual is a legally authorized representative (LAR) and has the permission to make decisions for the adult. Even though the adult doesn’t have the capacity to consent, you should still ask their permission to participate by using an assent form, where appropriate. 

It is important for the Board to have a clear understanding of all the players involved in the adult’s life. Who is the caregiver? Is the caregiver the abuser? Does the participant still live with the abuser? Is the caregiver the LAR? Developing the consent process may be challenging and it is important that the process protects the participant and that they are properly advocated for, as well as receive the full opportunity to assent, where possible. As you develop your consent documents, make sure that they provide the participant and the surrogate with accurate and useful information that will help them understand the scope and nature of their participation. 

Confidentiality Issues and Consent Forms

Understanding the abused adult’s situation will help you to anticipate how to protect his or her confidentiality. For some abused adults, their abuser may still be in their lives and if the abuser found out about the abused adult participating in a study about abuse, it may incite further harm to the adult. It is important that you consider how to approach the abused adult (which can only occur after the LAR gives permission) about the study, where the study will take place, and how the data are collected and stored so that confidentiality will be protected. Even providing the participant with a pamphlet about the study may not be wise if it could be linked to the participant.

There may be instances in which confidentiality has to be compromised. If you learn of new instances of abuse, you may be legally obligated to report the abuse.

As mentioned in the previous section, you will need to obtain consent from a legally authorized representative and assent from the abused adult. Templates for these documents are found in the Consent Templates section and information about this process can be found in the Participants with Diminished Capacity to Consent section. If the potential exists that you may have to compromise confidentiality, you should provide this information in the consent form in the “Confidentiality” section; provide the participants with specifics about what would prompt you to break confidentiality and what information will be shared. For example, see the sample text below:

Consent form text (please modify so that it is appropriate for the participants’ reading level): I have ethical obligations to report suspected abuse and to prevent others from carrying out threats or doing serious harm to you. If keeping information obtained in this study private would immediately put you in danger, I will release that information to protect you.

Reporting Abuse of Adults with Diminished Capacity

What is elderly and adults with diminished capacity abuse?
The abuse of the adults with diminished capacity can take many forms including sexual assault, physical abuse, emotional abuse, and financial abuse. The Adult Protective Services (under the Virginia Social Services office) provides the following pdf document highlighting the signs of abuse.

What are my responsibilities to report elderly and adults with diminished capacity abuse?
See the Adult Protective Services pdf regarding mandated reporting. Although researchers are not specifically listed as a legally obligated reporter, there is a lengthy list of responsible parties.

  • Any person licensed, certified, or registered by health regulatory boards listed in § 54.1-2503, except persons licensed by the Board of Veterinary Medicine:
    • Board of Nursing: Registered Nurse (RN); Licensed Nurse Practitioner (LNP); Licensed Practical Nurse (LPN); Clinical Nurse Specialist; Certified Massage Therapist; Certified Nurse Aide (CNA)
    • Board of Medicine: Doctor of Medicine and Surgery, Doctor of Osteopathic Medicine; Doctor of Podiatry; Doctor of Chiropractic; Interns and Residents; University Limited Licensee; Physician Assistant; Respiratory Therapist; Occupational Therapist; Radiological Technologist; Radiological Technologist Limited; Licensed Acupuncturists; Certified Athletic Trainers
    • Board of Pharmacy: Pharmacists; Pharmacy Interns; Permitted Physicians; Medical Equipment Suppliers; Restricted Manufacturers; Humane Societies; Physicians Selling Drugs; Wholesale Distributors; Warehousers, Pharmacy Technicians
    • Board of Dentistry: Dentists and Dental Hygienists Holding a License, Certification, or Permit Issued by the Board
    • Board of Funeral Directors and Embalmers: Funeral Establishments; Funeral Services Providers; Funeral Directors; Funeral Embalmers; Resident Trainees; Crematories; Surface Transportation and Removal Services; Courtesy Card Holders
    • Board of Optometry: Optometrist
    • Board of Counseling: Licensed Professional Counselors; Certified Substance Abuse Counselors; Certified Substance Abuse Counseling Assistants; Certified Rehabilitation Providers; Marriage and Family Therapists; Licensed Substance Abuse Treatment Practitioners
    • Board of Psychology: School Psychologist; Clinical Psychologist; Applied Psychologist; Sex Offender Treatment Provider; School Psychologist – Limited
    • Board of Social Work: Registered Social Worker; Associate Social Worker; Licensed Social Worker; Licensed Clinical Social Worker
    • Board of Nursing Home Administrators: Nursing Home Administrator
    • Board of Audiology and Speech Pathology: Audiologists; Speech-Language Pathologists; School Speech-Language Pathologists
    • Board of Physical Therapy: Physical Therapist; Physical Therapist Assistant
  • Any mental health services provider as defined in § 54.1-2400.1;
  • Any emergency medical services personnel certified by the Board of Health pursuant to § 32.1-111.5;
  • Any guardian or conservator of an adult;
  • Any person employed by or contracted with a public or private agency or facility and working with adults in an administrative, supportive or direct care capacity;
  • Any person providing full, intermittent, or occasional care to an adult for compensation, including but not limited to companion, chore, homemaker, and personal care workers; and
  • Any law-enforcement officer.

As a researcher, you may fall into a category that makes you legally obligated to report suspicions of abuse. Failure to report can result in a fine. Regardless of your legal responsibilities, the Board asks that you act in the best interests of the participant.

Your ethical responsibilities as a researcher are explained in the Belmont Report. In the “Respect for Persons” section, it states that “persons with diminished autonomy are entitled to protection.” In the “Beneficence” section, it states that “Persons are treated in an ethical manner… by making efforts to secure their well-being.” In your work with the elderly and adults with diminished capacity, please seek to secure their well-being by being aware of their situations and where there may be a potential for harm to them. Depending on your expertise, it may not be appropriate for you to counsel an abused adult or to become involved in the family’s situation; in some cases, inappropriate action may put the adult in a dangerous situation. Please contact the necessary authorities if you are concerned about an adult’s safety and well-being.

Who do I contact if I suspect elderly and adults with diminished capacity abuse?
The Adult Protective Services (under the Virginia Social Services office) has a hotline for reporting abuse: 1-888-832-3858