In this concluding article, Healthcare Excellence Canada and the Canadian Institutes of Health Research reflect upon and respond to the lessons learned from the contributing articles in the special issue and summarize key takeaways for the next steps in evidence-informed pandemic preparedness in long-term care in Canada. The implications of their cross-organizational partnership for achieving collective impact now and in the future are also discussed.

Key Takeaways

• The long-term care (LTC) sector has experienced long-standing challenges, which were exacerbated by the COVID-19 pandemic. Despite these circumstances, LTC homes and the people who work, live or provide care in these settings continue to persevere using existing resources and push to prioritize high-quality care and quality of life.
• Implementation Science Teams noted that strengthening the LTC sector will require investment in staffing and infrastructure; design and implementation of national standards that support resident-focused quality of care and quality of life; long-term and sustained investment in data and research that support continued building of an LTC learning health system in Canada; and successful implementation, spread and scale of promising, evidence-informed policies and interventions.
• Opportunities for future investment include aligning research with real-time operational needs by embedding research capacity within LTC homes and investing in LTC research initiatives and capacity in the science of implementation and spread and scale.

Background

The Strengthening Pandemic Preparedness in Long-Term Care initiative (HEC 2022a) was launched as a rapid research response to the COVID-19 pandemic by Healthcare Excellence Canada (HEC) and the Canadian Institutes of Health Research (CIHR) in partnership with the Centre for Aging + Brain Health Innovation, Michael Smith Health Research BC, the Saskatchewan Health Research Foundation and the New Brunswick Health Research Foundation. The initiative aimed to mobilize the research community, partner it with long-term care (LTC) homes and support the implementation and evaluation of evidence-informed interventions designed to support pandemic response and recovery in LTC and, ultimately, keep LTC staff, residents and caregivers safe from COVID-19.

In total, 22 Implementation Science Teams (ISTs) were funded and partnered with 91 LTC and retirement homes across 10 provinces, caring for more than 14,000 residents. The ISTs focused on six promising practice intervention areas (Box 1). Key ingredients of the ISTs were partnerships and engagement among researchers, residents, essential care partners (ECPs), staff and knowledge users with decision-making authority within LTC homes, targeted funding and contribution to a Common Measurement Framework (CMF) project (Hardy et al. 2022). The CMF results, to be published in the future, aim to inform a collective understanding of the enablers of and barriers to implementation success across homes.

Overall, this special issue shares key evidence and implications stemming from the work of the ISTs in the areas of family presence, people in the workforce and planning for COVID-19 and non–COVID-19 care. The special issue also includes papers featuring the voices of ECPs and partnering LTC homes, as well as a paper by Samir Sinha, who led one of the ISTs and is leading the development of the new national LTC standards (Sinha 2022). In this final response paper, we reflect on their contributions and the next steps for LTC research and transformation in Canada.

What We Heard

COVID-19 and non–COVID-19 care

True person-centred care is the gold standard, whether in a pandemic context or not. Three ISTs outlined their work in advancing person-centred care in LTC, including the implementation of a Dementia Isolation Toolkit, preventing avoidable emergency department transfers of LTC home residents via an integrated virtual care model and a tool to assess palliative care needs (Hsu et al. 2022).

The authors emphasized that solutions designed to support person-centred care in LTC must be flexible and adaptable to the environment (Hsu et al. 2022). While historic challenges faced across the sector are acknowledged – including low staffing levels, time constraints, cost barriers, educational gaps and lack of teamwork and management support – partnership with research teams was identified as a notable strategy to accelerate the development and implementation of interventions that address person-centred COVID-19 and non–COVID-19 care.

People in the workforce

Supporting the healthcare workforce has been a critical challenge since the onset of the COVID-19 pandemic, with extraordinary demands and staffing issues leading to the potential for long-lasting consequences (Tardif et al. 2022).

Six ISTs came together to share key findings and takeaways regarding projects related to the LTC workforce (Glowinski et al. 2022). The authors reiterated prominent issues faced by overburdened LTC staff, including low wages, burnout, moral distress, lack of access to mental health services and job precarity – all compounded by the fact that a high proportion of the LTC workforce includes many racialized immigrant women facing or at risk for conditions of vulnerability stemming from the social and structural determinants of health.

Very real and severe consequences of understaffing were urgently noted in Glowinski et al.'s (2022) paper, resulting in staff burnout and decrease in the quality of care. In addition, the implementation of policies designed to prevent further spread of disease, such as single-site employment, brought unintended consequences and exacerbated staffing burdens. Importantly, excessive workloads and lack of time were barriers to staff engaging in the research projects.

The authors emphasized the need for appropriate resourcing to alleviate workload and stress, strengthen the sector and ensure that improvement interventions such as those studied by the ISTs can be successful and sustainable.

Long-term care home partners

Two Ontario-based LTC homes (peopleCare and Perley Health) that participated in the IST initiative also shared their perspectives and reflections on engagement with the research teams (Campbell et al. 2022). Both were well positioned to participate in this initiative, given the successes achieved in their early pandemic response. The goal of their participation was to not only build capacity within their own homes but also generate evidence by implementing and evaluating practical solutions that could be shared across the LTC sector to mitigate future outbreaks and strengthen pandemic preparedness, overall. According to Perley Health, "There was a collective understanding that this research project was contributing more toward solutions that everyone wants for LTC … generat[ing] energy and enthusiasm to continue with future research and implementation" (Campbell et al. 2022: 30).

Other key themes identified by the LTC homes include the importance of ECPs in LTC (as core and important members of the resident's care team); prioritization of person-centred care; preparation as a key for success; the criticality of communication (with both families and staff) in a pandemic context and utilizing new and creative approaches to address communication gaps; designing interventions to fit within existing workflows; leveraging research to understand what works; and spreading and scaling learnings to other homes and contexts.

The commitment that exists within these LTC homes and many others across the country to partner with residents, families, ECPs and researchers further bolsters the opportunities that exist to improve the LTC care system, together. Overall, we heard that research is fundamental to the future of LTC and we are encouraged by this sentiment – reinforcing continued and strong connections between academia and care delivery.

Family presence

Family presence was a prominent issue during the pandemic, particularly when visitor restrictions were enacted. Eight ISTs that focused on the promising practice involving the presence of family and essential care partners came together to identify key evidence, common themes and lessons learned across their projects (Gallant et al. 2022).

The teams concluded that the establishment of strong partnerships with family caregivers and residents, inclusive and patient-centred approaches to care, digital innovations and continued integration of research and evaluation within the LTC sector to promote evidence-informed decision making are key strategies for improving family presence and, ultimately, resident outcomes.

Importantly, we heard that equity and inclusion must be a central consideration so that all residents are able to access and meaningfully engage with innovations brought forward. We also heard that the greatest barriers to accessible and inclusive family visitation policies are a lack of staffing and physical infrastructure, speaking to the need for appropriate resourcing in the LTC sector.

Essential care partners

The literature supports the involvement of ECPs as key to quality of care and quality of life (HEC 2020). Notably, the past two years have invigorated and re-enforced the critical role they play in LTC. We heard from three ECPs about their experiences broadly in LTC throughout the pandemic, as well as in engaging with ISTs (Johnston et al. 2022). As shared by Johnston et al. (2022), "There is power in involving family members in end-of-life care, which adds layers of dignity, flexibility and compassion to make an LTC home feel like a home" (p. 45).

The ECPs highlighted the toll that the continuously changing COVID-19 context and LTC visitor restrictions had on them, their loved ones and the staff. Barriers and facilitators to ECP involvement were also emphasized, including adaptive and flexible thinking by LTC homes that allowed for continued communication channels when family members were not able to visit. Yet, inconsistent messaging and technology challenges (or lack of access to technology altogether) created difficulty.

Praise for the LTC workforce was ample, with the ECPs emphasizing their resilience throughout this trying time. In addition, the ECPs stressed the need for more staff who are adequately prepared and equipped with the skill set and characteristics required to meet complex care needs with a person-centred approach.

By integrating care partners into research teams, their experiences, knowledge and expertise were incorporated into the research program, thereby creating "more robust, meaningful and impactful" work (Johnston et al. 2022: 45). As one ECP wrote, involvement in the research process provided the opportunity to address real issues that they were familiar with through their lived experience (Johnston et al. 2022). The ECPs concluded by stating that "Although our experiences are unique, our goal is the same. We must all find ways to walk the talk on person-centred care to ensure that every resident in LTC receives safe and high-quality care based on their individual needs" (Johnston et al. 2022: 45).

We see the cruciality of ECP involvement as a strong and key takeaway of the broader Strengthening Pandemic Preparedness in Long-Term Care initiative. Furthermore, as the system looks to improve the quality of care and quality of life in LTC, meaningful engagement and partnership with residents and their ECPs must be a priority.

Improving the quality of care and quality of life in long-term care: Development of Canadian national standards

Samir Sinha, lead researcher for an IST and chair of the Health Standards Organization's National Long-Term Care Service Standards Technical Committee, reflected on the importance of the new national standards and their potential for impact (Sinha 2022). According to Sinha, the standards have the potential to indicate the direction in which Canada needs to move in order to provide high-quality, safe and resident-centred care, where the residents come first in all facets of care planning and delivery in LTC homes, regardless of their size, location or organizational structure.

Moreover, the standards have the potential to make a transformative impact by forming the basis of legislation, policy, governance and quality improvement efforts. He emphasized that there is a critical role for research in the implementation and evaluation of the standards, noting that "[r]esearch and improvement initiatives are a critical way to help us better understand what is required to provide safe, reliable and high-quality LTC" (Sinha 2022: 51).

Overall, more than 20,000 Canadians were engaged in the process to create the new standards, reflecting the committee's underlying and fundamental commitment to transform toward resident-centred LTC.

Next Steps for Evidence-Informed Long-Term Care Pandemic Preparedness in Canada

Overall, five key themes emerged from the ISTs and the evidence presented in this special issue.

• Person-centred care (also referred to as patient- or resident-centred care across papers) is a must in all contexts and settings and should be foundational to future work in the sector.
• ECPs are critical. They must be meaningfully engaged as care partners and have a seat at the table. They have invaluable knowledge and insight that must be considered and reflected in intervention development and implementation.
• Clear, consistent and reciprocal communication must be maintained between residents, family members and other ECPs and staff during a pandemic and leveraging technology can help in doing so.
• Supporting people who work in LTC is essential and requires urgent attention, including strengthening competencies and capacities to meet resident needs and ensuring appropriate supports, working conditions and staffing levels.
• Research – in partnership with LTC homes, residents and ECPs – is an important lever to support the implementation of evidence-informed interventions and, ultimately, better care, quality of life and health outcomes.

The LTC sector faced long-standing challenges prior to the COVID-19 pandemic, and the challenges that the sector continues to face are profound. LTC was disproportionately vulnerable to the pandemic and disproportionately in need of focused attention and resources to respond, recover and renew. Despite their challenges, the research and the experiences that have been shared with us through this work highlight the incredible resilience of the people who work, live at or provide care in these settings and their commitment to pushing forward to a future where high-quality care and quality of life are prioritized.

The Strengthening Pandemic Preparedness in Long-Term Care initiative was made stronger with collective partnerships and the union of quality improvement with implementation science. This initiative generated momentum across the sector to think about sustainable solutions for LTC system transformation. To address long-standing challenges and renew a sector that cares for some of our most vulnerable, the ISTs note that much more will be needed – including investment in staffing and infrastructure; design and implementation of national standards that support resident-focused quality of care and quality of life; long-term and sustained investment in data and research that supports the continued building of an LTC learning health system in Canada; and successful spread, scale and implementation of promising, evidence-informed policies and interventions. This initiative also generated momentum to think about the power and promise of research-based investment in LTC. The ISTs involved co-design approaches, partnerships between researchers and LTC homes, essential caregivers and the expertise of implementation science. Opportunities for future investment in LTC include embedding research capacity directly within LTC homes (aligning research with the real-time operational needs of the health system), capacity development in the science of implementation (what works, for whom and in what contexts?) and spread and scale.

Partnering for Collective Impact

We would be remiss if we did not highlight the pan-Canadian partnership that supported the Strengthening Pandemic Preparedness in Long-Term Care initiative as we see this as a model to learn from and replicate in the future (HEC 2022b). Altogether, HEC, CIHR, four additional funding partners and 91 LTC and retirement homes across Canada partnered in this research program to support the rapid implementation and evaluation of interventions that aimed to keep residents, families, caregivers and staff safe from COVID-19 – an investment of $3.4 million that will undoubtedly see long-lasting returns.

The most notable outcomes of this innovative partnership model include:

• leveraging cross-organizational work and resources to rapidly respond to the LTC sector's needs;
• building LTC system capacity to rapidly improve care during and beyond the COVID-19 pandemic;
• creating a structure to achieve shared research, knowledge translation, implementation and sustainability objectives; and
• strengthening a community with a shared commitment to and expertise in LTC improvement.

The partnership also resulted in new opportunities that may not have occurred otherwise. It built relationships among researchers and LTC homes, created learning and networking opportunities and allowed for the rapid mobilization of knowledge and resources to a sector where this was previously lacking. Even more broadly, the partnership successfully demonstrated the value of marrying quality improvement initiatives with implementation science expertise for greater system impact.

Along this journey, we felt honoured and humbled to hear from staff, residents, families and ECPs about their experiences both before and during the COVID-19 pandemic. We have heard experiences across the continuum of care from those who experienced substantial and irrevocable harm, as well as those who have found new ways to partner, collaborate and innovate. Across Canada, the pandemic has affected each one of us differently. The profound impact it had on LTC residents, families, ECPs and staff cannot be understated, and we are grateful that in the midst of one of the largest global crises, these individuals engaged so thoughtfully in the work of improving LTC systems. We were inspired by the scale of engagement, impact and passion that we saw across those participating.

We hope that this initiative can be a source of learning and inspiration for the future, wherein organizational partnerships are established as an effective way to improve the quality, safety and outcomes of care with evidence.

Ce que nous avons entendu : prochaines étapes pour la préparation des soins de longue durée en cas de pandémie au Canada 

Résumé 

Dans cet article de conclusion, Excellence en santé Canada et les Instituts de recherche en santé du Canada se penchent sur les leçons tirées des articles du présent numéro spécial et résument les principaux points à retenir pour les prochaines étapes d’une préparation aux pandémies fondée sur les données probantes dans les soins de longue durée au Canada. On y aborde également les répercussions de ce partenariat interorganisationnel qui vise l’obtention d’un impact collectif maintenant et à l’avenir. 

Disclaimer

This work is supported by Healthcare Excellence Canada (HEC). HEC works with partners to spread innovation, build capability and catalyze policy change so that everyone in Canada has safe and high-quality healthcare. The views expressed herein are those of the authors and do not necessarily represent the views of HEC.

HEC is an independent, not-for-profit charity funded primarily by Health Canada.

The views expressed herein do not necessarily represent those of Health Canada. Unmodified use or reproduction of this publication is permitted within Canada for non-commercial purposes only. This publication is provided "as is" and is for informational/educational purposes only. It is not intended to provide specific medical advice or replace the judgment of a healthcare professional. Those preparing and/or contributing to this publication disclaim all liability or warranty of any kind, whether express or implied.

This work is supported by the Canadian Institutes of Health Research (CIHR). At CIHR, we know that research has the power to change lives. As Canada's health research investment agency, we collaborate with partners and researchers to support the discoveries and innovations that improve our health and strengthen our healthcare system.

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