Huron Perth Healthcare Alliance: Caregivers As Partners

In 2015, the Huron Perth Healthcare Alliance (HPHA) made an organizational commitment to partner with family caregivers as essential members of the healthcare team. Little did they know that their work to put their commitment into action would be so important five years later when the COVID-19 pandemic hit.

To prevent spread of the virus and protect patient and providers, the Ontario government immediately put out a directive to the hospital sector that visitors weren’t allowed to come into hospitals.

For many hospitals, the response was quick. A blanket “No Visitor” policy was put in place – meaning family caregivers could not come in to support their family member, sometimes at very vulnerable and scary times in their lives, with very few exceptions.

HPHA had to revise their family presence guidelines, but, by definition family caregivers were not visitors. The process for coming into the hospital had to be different, including screening and PPE requirements, to ensure that everyone involved was safe, but essential caregivers were still allowed to accompany and support their family members.

“The culture of family caregivers as partners is firmly embedded at HPHA. Since 2015, we have been working with caregivers to co-design the way that HPHA and our partners welcome caregivers as partners in care,” explains Anne Campbell, Vice-President, Partnerships and Chief Nursing Executive. “When COVID-19 hit, we couldn’t revert back. It was a chaotic time, but we knew we had to maintain our commitment to patient-centred care.”

As Michelle Jones, Corporate Lead of Patient Experience at HPHA, explains, “We changed our policy to reflect the reality of the pandemic. We defined essential family caregivers, and ensured that patients who were palliative, patients who would be at risk if they were alone, mothers giving birth, or other patients who needed a family member for compassionate reasons, were able to have a family member with them.”

Patient partners (people who have been a patient or family member of a patient) were part of the team that helped define the criteria for essential caregivers. Because HPHA had invested in relationships with families over the past five years, they could quickly get input and feedback from patient partners through email. With every change, Michelle could virtually co-design the approach with patient partners and caregivers. This wouldn’t have been possible if HPHA’s journey to embrace caregivers as healthcare team members hadn’t started long before COVID-19.

For Charlene, a family caregiver partner at HPHA, this process of reviewing the changing policies and providing feedback had an added benefit. “We were getting updates from HPHA all the time – it was like they were translating what we were hearing in the news and helping us understand what it meant for us as parents and caregivers. We shared those updates with our networks of caregivers – for example, I could post the information on the Facebook group that I’m on with other parents of children with chronic illness.”

More importantly, Charlene said it helped her understand what the exceptions were, and it meant there were “less hoops, less anxiety and less hurdles to go through when going into the hospital with family members.”

To make it clear that essential caregivers were allowed to be in the hospital, HPHA used a Caregiver ID badge.

“The Caregiver ID badge was an important part of our process.  It was recognition of the family member as an essential caregiver, and for staff, it was a validation that the caregiver has passed screening and had been trained in using PPE.”

This highly visual tool made the process of welcoming essential family caregivers much smoother at a time of such chaos and uncertainty.

Shortly after the revised family presence policy was introduced to reflect the realities of COVID-19, HPHA heard from cancer patients and their family members. They were anxious, especially those who were coming for their first chemo treatment and would be in the hospital for up to 8 hours on their own.

HPHA responded quickly to these inquiries from family members and set up a process to allow them to come to the hospital and provide support to their family members at this incredibly scary time.

The Manager of the Unit had conversations with the caregivers, and provided the screeners at the front doors of the hospital with the names of the caregivers who were allowed to come in.

“As part of our journey, staff and provider education was imperative,” says Anne. “In the past two years, we made the Caregivers as Partners training modules mandatory for all staff. In the end, more than 1000 people completed that training session. For many, the training was a turning point when staff realized that caregivers were so essential. The modules really showed that if the caregiver isn’t doing well and isn’t prepared at discharge, the patient will flounder and end up back in hospital.”

Barbara, an HPHA family caregiver partner reinforces this point. “When you have the correct information when you are caring for someone, it makes a world of difference.  We’re all in this healthcare journey together.”

Never has that been more true, than during a pandemic.

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