Quality Improvement Project

Prepared by: Eilon Caspi PhD

Funded by: Connecticut Long-Term Care Ombudsman Program

Executive Summary

General Background

Residents’ complaints in nursing homes are considered ‘the front-line system for addressing their concerns’ (U.S. Office of Inspector General, [OIG] 2006) and ‘a critical safeguard to protect vulnerable residents’ (OIG, 2017). However, research has found that 23% of nursing home residents worry about retaliation when voicing care concerns and that ‘worry about potential retaliation was just as fearsome for some individuals as the experience of retaliation itself’ (Robison et al. 2007; 2011). A recent study examined the lived experience of fear of retaliation and retaliation in 100 nursing homes in 30 states (Caspi, 2024). These studies suggest that fear of retaliation represents a strong barrier for reporting care concerns, rights violations, and mistreatment.

Quality improvement Project

The primary goal of the project was to identify Ombudsman representatives’ strategies and barriers in addressing residents’ fear of retaliation and actual retaliation against them when voicing care concerns in long-term care homes. Semi-structures interviews (Zoom recorded) were held with 50 representatives from 32 states. The interviews were transcribed and systematically examined to meet the project’s goals.

Main Findings

• Residents’ fear of retaliation was reported by numerous representatives to be prevalent.
• Dozens of forms of retaliation against residents were identified (subtle forms of retaliation were reported to be more common and harder to prove than blatant / obvious / evident retaliation).
• Characteristics of residents more and less fearful of retaliation as well as those considered at higher risk of retaliation were identified (preliminary evidence only; research is needed to confirm it).
• A series of contributing factors were identified (e.g., institution-centered culture of care, leadership role (‘it starts from the top’), poor staffing levels and staff training, and the way staff are treated).
• A series of challenges and barriers operating inside and outside care homes were identified (e.g., consent requirements, the burden of proof (‘it happens in private’), culture of care instilling fear of retaliation and dismissing care concerns, staff compromising Resident Councils, poor staffing levels, and poor documentation). Barriers outside care homes included inadequate federal and state regulatory oversight and enforcement and weak state regulations governing the assisted living sector.
• Dozens of strategies were described as helpful (e.g., resident education and empowerment, staff education, detecting signs of fear of retaliation, breaking the isolation (‘there’s power in numbers;’ finding ‘internal advocate),’ thorough investigations, Resident Councils, Care Plan meetings, the grievance process, examining discharge notices, and working collaboratively with care homes.
• Over 130 stories and numerous other examples demonstrated representatives’ success but also challenges and barriers in addressing residents’ fear of retaliation and retaliation against them.
• Educational efforts delivered by representatives to residents and staff were described (though gaps in these efforts were also identified and recommendations for improvement were made).
• Characteristics of Administrators / care homes with low resident fear of retaliation were identified.
• Lessons learned, advice to new representatives, and assistive technology’s role were described.
• Areas in need of legislative changes and other important recommendations were identified.