“I try to stay isolated because of disrespectful treatment by staff. I am nervous now that I said something. They will come at me,” said one anonymous resident of a nursing home, describing how expressing concerns about the care they receive could lead to abuse, neglect, punishment, and other forms of retaliation.
Despite federal and state laws protecting residents’ rights to voice grievances, this fear of retaliation scares them into silence and has emotional, psychological, and physical consequences. While prevalent, the fear of retaliation has largely been overlooked in policy and research.
Eilon Caspi, a gerontologist and assistant research professor at UConn’s Institute for Collaboration on Health, Intervention, and Policy (InCHIP), has a new study published in the Journal of Applied Gerontology that aims to improve understanding of this phenomenon. The study analyzes 100 standard survey and complaint investigation reports from state survey agencies in nursing homes across 30 states.
The fear of retaliation describes a feeling of vulnerability that one’s actions may cause retaliation by another. Retaliation refers to the act of revenge by facility staff in response to a complaint.
Caspi’s study represents the most in-depth analysis of residents’ fear of retaliation in U.S. nursing homes to date. The study seeks to improve understanding of residents’ lived experiences of four aspects of this phenomenon: fear of retaliation, allegations of threats of retaliation, perceived retaliation, and confirmed retaliation. It also illuminates the emotional consequences of this phenomenon on residents.
“Given that research on this phenomenon is in its infancy, the findings can serve as the basis for development of questions for future research,” says Caspi.
According to the National Long-Term Care Ombudsman Resource Center, “Fear of retaliation is one of the most common reasons residents do not want to pursue a complaint and disclose their identity. Since residents live in a facility and rely on staff for their basic needs, their fear of retaliation cannot be overemphasized.”
Caspi found that various forms of retaliation and fear of retaliation resulted in suffering and harm to residents and were poorly addressed. When voicing care concerns or deciding to file complaints relating to rights violations and mistreatment, residents expressed fear of eviction, collective punishment, physical violence, delayed care, and aggressive confrontations, among other forms.
Part of the driving factor of this experience of fear of retaliation is the power imbalance that exists between staff in nursing homes and vulnerable residents. This imbalance may result in residents not being able to draw attention to abuse or staff not reporting abuse to protect themselves or their colleagues. The study also found that because residents worried about retaliation, they did not report mistreatment, and when it was reported, investigations were often delayed.
“Although additional research is needed to shed light on it, the study showed that many residents’ experiences of fear of or actual retaliation could be characterized as ‘learned helplessness,’ essentially giving up trying to voice care concerns as a result of repeated failure to bring about change,” says Caspi.
This study has a range of implications for policy and practice, namely education, oversight, enforcement of federal rights, and national and state awareness campaigns, which could encourage further discourse about and meaningful action to prevent and reduce the fear of retaliation.
Educational programs would help empower residents and families to resolve issues of neglect, fear of retaliation and retaliation itself, and provide clear guidance about what constitutes as or is perceived as retaliation against residents.
In Connecticut, nursing home administrators are mandated under state law to provide staff members with annual training on fear of retaliation, which encompasses residents’ rights to file complaints, examples of employee retaliation, and strategies to prevent staff retaliation against residents. Connecticut is the only state to require such training. That said, the law in Connecticut needs to be expanded to include the assisted living sector.
Given that the fear of retaliation has been shown in an early study led by UConn Center on Aging professor Julie Robison to be a reality in all types of long-term care homes, “all states should consider enacting similar laws while ensuring that it will be applicable to assisted living residences as well as nursing homes,” says Caspi.
Beyond education for residents, their families, and staff, Caspi recommends strengthening federal oversight, protections, deterrence, and enforcement related to fear of retaliation. The Centers for Medicare & Medicaid Services (CMS) does not centrally track this phenomenon in over 15,000 nursing homes nationwide. In addition, the National Ombudsman Reporting System currently only tracks complaints of “retaliation” and not residents’ fear of retaliation.
“Left untracked, the phenomenon remains invisible, important opportunities for learning and prevention are missed, and vulnerable residents remain silenced,” says Caspi.
