From Ideas to Action

After the onset of the COVID-19 pandemic and understanding the negative impact of visiting restrictions during wave one, Niagara Health partnered with Niagara Health Engagement Network and Patient Partners to implement change. The concept of Caregiver ID and caregivers as part of the care team was part of their long-term plan. After the challenges of the first and second wave of the pandemic, however, Niagara Health’s executive leadership recommended ‘fast forwarding’ those plans and implementing an essential caregiver program as soon as possible. “We are committed to authentic partnership and listening to the needs of our community, which is why the essential care partner program was developed” explained Lynn Guerriero (President and CEO, Niagara Health) and Linda Boich (Executive Vice President, Quality, Mental Health and Addictions and Executive Lead Integrated Care).

Partner Involvement

Niagara Health looked to the Ontario Caregiver Organization for support and was connected with early adopters Hôtel-Dieu Grace Healthcare (HDGH) and Bruyère to learn from their experiences and adapt existing tools. A cross-functional team was pulled together with representation from five sites, and included managers, directors, screeners, communications, IT, and most importantly, Patient Partners. As Sonia Pagura (Director of Quality, Safety, Risk, Patient Partnership and Relations) notes, “we took a co-design approach because we knew it needed to be adapted to Niagara’s unique needs and population.” Pagura credits Patient Partner involvement as a key success factor in the development of the program. Maia Greig, one of the Patient Partners who participated in the process reflected that she “was consistently supported throughout the journey and was made to feel included. I believe the most meaningful contribution I made as a Patient Partner was the importance of including emotional support as a critical component of an essential care partner”.

Accelerated Implementation

Niagara Health’s essential care partner program planning began in December 2020 and went live just six weeks later on January 24, 2021. The program was embedded in the nursing assessment and incorporated into the electronic platform with an automated trigger across their five sites to ensure there was no additional clinical burden for staff. In preparation, simulations were conducted to test the system and a LEAN event was completed shortly after the launch to further streamline the process.

At Niagara Health, each essential care partner is issued a printed badge. Pagura explains that “the badge is an acknowledgement of the essential care partner role. It’s a visual management piece for staff to understand that they an integral part of the care team and their presence is encouraged, including on a 24/7 basis.”

Program Impact

The impact of the essential care partner program has created positive ripple effects on both patients and caregivers. In one instance, Cathie, an essential care partner for her father, actually extended her role to include her father’s hospital roommate when she realized there was a need: “Dad shared a room with an 86-year-old gentleman for a couple of weeks and we all became quite friendly. His roommate had expected to be in the hospital for a day or two and when we met, he had been there about 3 weeks (which turned out to be 4 months!)  He eventually moved to another ward before Dad was discharged and I was able to have my ECP extended to visit and take him coffee/supplies in the other ward. The most important thing one needs is a personal connection and we became the connection because his family lives out of town. That wonderful connection continues to this day.”

Moving Forward

After its launch over ten months ago, over 2000 essential care partners have been on-boarded and trained at Niagara Health. Next steps will be a focus on evaluating the program and continued plans for sustainability. As Pagura notes, “It is critical that this is a forever program and that we continuously identify care partners and include them as part of the care team, as their wisdom and support contribute to positive health outcomes.”

Difficult Decisions to Inspiring Solutions

In March of 2020 at the start of the pandemic, Hôtel-Dieu Grace Healthcare (HDGH), like many hospitals across the province faced the difficult decision to close the doors to visitors, leaving patients and families separated. Janice Kaffer, President and CEO, along with the staff and physicians struggled with this decision. “I remember when we made the decision, we had our Patient and Family Advisory Council involved and it was a difficult decision for all of us. I then found myself on the units rounding and our staff, too, were struggling with closing our doors. We knew following SARS in 2003, that we needed to be concerned about the emotional harm this was going to cause our patients. We knew we had to find a solution,” explained Kaffer.

Paving the Way

One of the first of its kind in Ontario, HDGH’s Designated Care Partner program was co-designed with the HDGH Patient and Family Advisory Council to ensure the patient voice was represented in program development. The Designated Care Partners (DCP) program, which rolled-out in June 2020, enables educated designated care partners to provide specific aspects of the care plan as defined by the patient and care team in a carefully planned and coordinated approach. HDGH’s active participation with the Ontario Caregiver Organization’s Partners in Care/Caregiver ID Learning Collaborative has allowed other organizations to learn from them and helped pave the way for other essential caregiver programs in Ontario.

Program Impact

After a year of implementing the DCP program, HDGH has trained over 852 individuals as DCPs. Joanne Laforet, a past DCP, credits the hospital for implementing this program. “I am certain had my loved one not been allowed a DCP she may have never been motivated enough to come home,” explained Laforet. The hour and a half orientation session provided by the hospital outlines safety guidelines, Infection Control and Prevention training and an opportunity to learn from trained staff to better assist their loved ones. Surveys from a group of DCPs show that 97% of DCPs felt confident and prepared as a DCP after participating in the training. Further, 98% felt they had gained the knowledge and skills necessary to fulfill their role as a care partner.

Moving Forward

The momentum built on the DCP program will continue to grow as HDGH, alongside the DCP Advisory Council, looks at a post-COVID model to strengthen the role of designated care partners, especially for patients with more long term, complex care needs. Kaffer is thrilled at the program’s success: “Since October 2020, DCP’s have dedicated over 20,000 hours at HDGH with their loved ones. The emotional impact this program has had on our patients cannot be understated.”

From Pilot to Program

The Algoma Ontario Health Team (AOHT) identified early on in the COVID-19 pandemic that with visitor restrictions in place, the exclusion of caregivers had numerous unintended consequences, and that their most vulnerable patients needed the emotional and physical support of their families.

In the Fall of 2020, the AOHT embarked on a pilot of the Caregiver ID Program, which launched in one unit at Sault Area Hospital (SAH; a core partner of the AOHT) in January 2021. The program quickly expanded to other units across the hospital. The project team, led by SAH’s Transformation Department, included membership from staff, leaders, Patient and Family Advisors, and other AOHT partner organizations. Project implementation involved updating essential caregiver policies, formalizing caregiver roles, providing caregivers with a visual identification card, and providing training and resources on topics such as infection prevention and control.

Meaningful Partnerships

Laura Tenhagen (Project Lead, SAH) explains that the meaningful engagement of caregivers was key: “Two patient and family advisors have been involved in the co-design of the project and they helped to shape future direction a lot, especially around supporting the role of caregivers.” In addition, working with the Ontario Caregiver Organization (OCO) as a participant in the Partners in Care/Caregiver ID Learning Collaborative was instrumental to the success of the AOHT’s program, allowing project staff to use previously developed tools and look to other hospitals for what worked.

Key Success Factors

Prior to onboarding the first essential caregivers in January 2021, SAH began communicating to staff about what to expect on the floor. “There was some initial hesitation and confusion around differentiating visitors and essential caregivers, but the process was clarified both for staff and caregivers. We used huddles, posters, and OCO’s e-learning modules, which highlighted the importance of working with caregivers and demonstrated that this was not an ‘extra step’ that staff had to do, and that caregivers are a huge asset to the team and can improve patient outcomes along the way” explains Tenhagen.

One of the key success factors has been ensuring the program is not too prescriptive for patients and caregivers. As Danielle Florio (Patient Care Supervisor, SAH) explains, “Allowing flexibility and the ability for the care team to adapt can be a bit scary at first for staff because we were concerned it would ‘go off the rails’, but it worked. Broadening the spectrum made it more successful.”

Program Impact

The impact of the program on patients, caregivers and staff has also turned some challenging situations into positive ones. Florio notes that for one particular patient, once their essential caregiver was onboarded, “Anxiety and anger melted away and the individual’s care started to be positively affected by support from their family caregiver.” The program has been very well-received by SAH’s staff, physicians, patients and families alike.

Looking Ahead

At a system level, we hope that if an essential caregiver is identified by a health partner, they will maintain that role as they seamlessly transition across the continuum of care throughout the community.

Addressing the Gap

Bruyère plays a unique role in the region’s health care system providing specialized hospital care, long-term care, and assisted and independent living for seniors.

They were among the first to institute a program that trained caregivers to allow them on their sites at all times, recognizing the important role family members play in the health and well-being of patients and residents.

For Bruyère’s long-term care homes, essential care partners had been mandated by the Ministry of Long-Term Care, and they had an organizational opportunity to broaden this support role to Bruyère’s hospitals.

Intense Implementation

Developing the program was a multi team effort with support from nursing professional practice, learning, Ontario Centres for Learning, Research and Innovation in Long-term Care (Ontario CLRI), patient family members, clinical directors, the quality team and senior leadership. With everyone’s support the program launched in August 2020.

As Rebekah Hackbusch, Manager, Spiritual Care at Bruyère recalls, getting the program up and running required support and expertise from across the organization – “we all recognized the impact that a program like this could have for our patients and relied on each other for the unique expertise needed to make it happen.”

The designated care partner training was developed by the Therapeutic Support Services Department, which drew from previously developed volunteer and nursing orientation materials. Hackbusch notes that much of the planning and materials were ready to be implemented and the first session was piloted when “suddenly we experienced an outbreak, and knowing that this would mean our patients wouldn’t be able to have their loved ones visit, we rolled it out much faster than planned.” Demand was high for designated care partners – training for designated care partners took place twice a week and was rolled out consistently for the next 6 months across all of Bruyère’s sites.

Big Impact

The impact of Bruyère’s designated care partner program has been significant. As Paula Doering, Senior Vice-President Clinical Programs, Chief Nursing Executive and Allied Health, at Bruyère notes, “we can’t do it without our Designated Care Partners. They provide incredible support to our patients and residents. We believe our Designated Care Partners have the potential to reduce the risk for falls and help improve health outcomes. We know that understanding the impact of the designated care partner program and fostering its continued improvement will be just as important as creating the program. Research, is currently underway to evaluate the program at three long term care homes.”

Bruyère’s implementation has also had a positive impact on healthcare partners across Ontario – their participation and sharing of their experience in the Ontario Caregiver Organization’s Caregivers as Partners Learning Collaborative has been instrumental in supporting other organizations to develop and implement their own essential caregiver programs more easily.

What’s Next

Over the course of the past year and a half, the training has evolved from a four hour in person training to a fifteen-minute online course followed by a one-hour in-person review of essential information and opportunity for Q&A and intensive Personal Protective Equipment PPE training. “We are now looking at ways to integrate Designated Care Partner training on the clinical units to ensure a more seamless integration of the Designated Care Partner role immediately following admission” Hackbusch notes. Bruyère is now looking to a time beyond the pandemic, and already planning for what their designated care partner program means and looks like in the long-term.

Committed to Family Inclusion

As a third-generation family-owned and operated organization, peopleCare Communities highly values and understands the important role of families and recognizes their contributions to residents and the long-term care homes. At the outset of the COVID-19 pandemic, when unprecedented visitor restrictions were put in place as a means to protect everyone, peopleCare remained committed to honouring the meaningful role that families play in quality of life and well-being. peopleCare worked hard to support the on-going inclusion of family members, starting with digital engagement and outdoor visiting.

peopleCare became an early adopter of an Essential Care Partner program to enable the safe presence of family caregivers, using practical resources from the Ontario Caregiver Organization. As Jennifer Killing, VP Quality, Research and Strategic Partnerships notes, “OCO’s toolkit was instrumental in supporting our homes leaders and front-line staff in recognition of the important role of family… this enabled supportive conversations throughout the home with a tone of welcome and inclusion in a time that was one of fear and anxiety.”

One of the key steps of developing the program was establishing a shared understanding and agreement around what defines essential care – and that it includes psychosocial and spiritual connection as much as physical care. Wendy Filiatrault, Director of Care at peopleCare AR Goudie, noted that the role of staff and family caregivers is complementary when supporting resident experience and quality of life. The Caregiver ID badge was also used adopted and aligned with Ministry directives to support distinguishing between social and care visits.

Shared Learning

peopleCare was able to participate in a research project and partner with Ontario Centres for Learning, Research and Innovation (CLRI) to evaluate their essential care partner program and helped to identify what was working well and where enhancements could better support residents and care partners. peopleCare is also an active participant of the Essential Care Partner Learning Collaborative and has been able to share their experience and knowledge with other peer organizations to support others as they implement essential care partner programs in their setting.

Moving Forward Together

Essential care partners and family participation is now embedded into the organizational fabric of peopleCare, with a strong, committed and skilled team of over 1200 registered essential care partners. In a recent development initiative, families were engaged and became integral in key aspects of the development and planning of a new 128 bed long-term care home in Meaford, Ontario. On ‘move in day’, over 65 essential care partners provided one-on-one support to residents, enabling the successful transition of residents to their new home.

peopleCare understands that essential care partners are an asset to their organization and continues to look for ways to recognizes and elevate the role of family caregivers in their long-term care homes.