Barriers and facilitators to person-centred infection prevention and control: results of a survey about the Dementia Isolation Toolkit

Abstract

Background People working in long-term care homes (LTCH) face difficult decisions balancing the risk of infection spread with the hardship imposed on residents by infection control and prevention (ICP) measures. The Dementia Isolation Toolkit (DIT) was developed to address the gap in ethical guidance on how to safely and effectively isolate people living with dementia while supporting their personhood. In this observational study, we report the results of a survey of LTCH staff on barriers and facilitators regarding isolating residents, and the impact of the DIT on staff moral distress. Methods We completed an online cross-sectional survey. Participants (n = 207) were staff working on-site in LTCH in Ontario, Canada since March 1, 2020, with direct or indirect experience with the isolation of residents. LTCH staff were recruited through provincial LTCH organizations, social media, and the DIT website. Survey results were summarized, and three groups compared, those: (1) unfamiliar with, (2) familiar with, and (3) users of the DIT. Results 61% of respondents identified distress of LTCH staff about the harmful effects of isolation on residents as a major barrier to effective isolation. Facilitators for isolation included delivery of 1:1 activity in the resident’s room (81%) and designating essential caregivers to provide support (67%). Almost all respondents (84%) reported an increase in moral distress. DIT users were less likely to report an impact of moral distress on job satisfaction (odds ratio (OR) 0.41, 95% CI 0.19-0.87) with 48% of users reporting the DIT was helpful in reducing their level of moral distress. Conclusions Isolation as an ICP measure in LTCH environments creates moral distress among staff which is a barrier to its effectiveness. ICP guidance to LTCH would be strengthened by the inclusion of a dementia-specific ethical framework that addresses how to minimize the harms of isolation on both residents and staff.

Improving the health equity and the human rights of Canadians with dementia through a social determinants approach: a call to action in the COVID-19 pandemic

“…Second, interventions are needed to improve social support for people with dementia during the pandemic. For example, studies show that social isolation has negatively impacted the mental, cognitive, and physical health of people with dementia (Bacsu et al, 2021a;Bethell et al, 2021;Iaboni et al, 2022). Consequently, there is a growing need for more evidence-informed research on interventions to foster social support (e.g., essential visitor programs, social support programs, and mental health programs) informed by lived experience and collaborative partnerships to ensure maximum impact.…”

“…This decision highlights that the pandemic is not appropriate justification for failing and/or refusing to adequately accommodate persons who require disability-related accommodation, including people with dementia. Consequently, research shows that COVID-19 visitation bans in long-term care facilities have had severe implications for people with dementia in terms of physical and mental health, diminishing social connections, undermining quality of life, and challenging the human rights of people with dementia in long-term care (Iaboni et al, 2022). As such, it is essential that policymakers be vigilant in avoiding infection control measures that violate the human rights of people with dementia.…”

“…Given the highly transmissible nature of COVID-19, provincial governments across Canada have imposed infection control measures such as lockdowns, stay-at-home orders, visitation bans, confinement measures, and physical distancing orders. However, research shows that social support is a basic human need, especially for people living with dementia in long-term care facilities (Bethell et al, 2021;Bacsu et al, 2021a;Iaboni et al, 2022). People with dementia have identified that loneliness can lead to feelings of abandonment and diminish one's quality of life (O'Rourke et al, 2015).…”

Staff perceptions of the consequences of COVID‐19 on quality of dementia care for residents in Ontario long‐term care homes

“…This study was based on a larger program of research investigating the barriers and opportunities to improve the compassionate and safe isolation of LTC home residents with dementia during public health crises guided by the Dementia Isolation Toolkit (DIT; www.dementiaisolationtoolkit.com ). 15 , 16 The University Health Network Research Ethics Board and a University of Waterloo Research Ethics Committee approved the study protocols and survey instruments.…”

“…15,16 The University Health Network Research Ethics Board and a University of Waterloo Research Ethics Committee approved the study protocols and survey instruments.…”