Tanya L’Heureux, RD, MAdED, PhD (c); Jasneet Parmar, MBBS, MSc, MCFP(COE); Sharon Anderson, MEd, MSc, PhD; Jamie Stewart, Learning Consultant
“Suddenly, my mother couldn’t talk. I called 911 and paramedics arrived shortly thereafter. While doing their assessment, they asked me about her medical history and what had changed. They listened intently, as I said, ‘Yes Mom is 100, but this is new. She was able to talk cogently and walk around the house.’ They suspected a stroke and then asked me about transport to hospital and if I wanted to ride with my mother. I followed the ambulance because I wanted my car. Once at the hospital, I waited with the paramedics for about an hour before my mom was admitted. While they were caring for my mom, I felt heard and that they appreciated my knowledge of my mother.”
~Sharon Anderson, Research Coordinator, Department of Family Medicine, University of Alberta
Family caregivers are integral to paramedicine, be it their calls for help, enhancement of patient assessments, or need for support through stress and/or loss. Anderson’s experience speaks to the specific role that paramedics can play in providing person-centered care for family caregivers.
Family caregivers are any person who take on unpaid caring roles in the community to provide emotional, physical, and practical support in response to mental and/or physical illnesses, disabilities, or age-related needs. Family caregiving can be short-term, long-term, or lifelong care. For example, it could be caring for a parent with dementia, a spouse or partner with complex chronic conditions, a neighbour recovering from surgery, a sibling struggling with mental illness, and/or a child with disabilities. Family caregiving includes a wide array of activities that allow care-recipients to remain in their homes for as long as possible.
“We as a society and healthcare system have relied heavily on family caregivers”, says Dr. Jasneet Parmar, Professor in the Department of Family Medicine at the University of Alberta and project lead for Caregiver-Centered Care Health Workforce Education, a Program of Applied Research & Innovation in Health Services Delivery in Family Caregiving and a Care of the Elderly Physician (1). She adds, “We need family caregivers to provide and sustain care.”
Family caregivers are important members of the care team. One in four Canadians, aged 15+, are family caregivers (2). They provide 5.7 billion hours of unpaid care per year in Canada, which is valued at $97.1 billion, the equivalent of 32.2% of national healthcare expenditures and more than three times the national expenditures on home, community, and long-term care (3).
While family caregiving can be fulfilling and rewarding, often coming from a place of love, duty, and reciprocity, it can also be very challenging and stressful. This is more likely when there are high caregiving demands and little support. Building better supports around family caregivers needs to move beyond training family caregivers to provide care. “We have to do a much better job of supporting family caregivers from within the healthcare system…We have a duty and a responsibility from within the healthcare system to [recognize and] support family caregivers,” says Parmar.
Lacey Shrontreau is exhausted, overwhelmed, and worried.
As a student nurse working full-time and a family caregiver to her mom who has just been diagnosed with early-onset dementia, she shares, “I haven’t sorted out everything she needs yet. I’m feeling overwhelmed. I care for patients all day, and then care for Mom at night…I don’t have enough time to study, and I’m stressed all the time. I never thought this would be so hard…I feel helpless. I worry all the time.”
She meets healthcare providers who recognize her role as a family caregiver and partner with and support her: “Each of them, in their own ways, made the burden lighten for my mom, and also for caregivers like me.”
Years later, reflecting upon this experience, she says, “All of my life, I wanted to be a medical professional, but I realize now that what I wanted, at my core, was to help people in need. That’s who I have become, through and through. It’s who we all are, really. We’re caregivers, in partnership with other caregivers.” She continues, “without ever losing focus on the care-recipient, let’s also take the initiative in sharing our knowledge and skills amongst each other and advocate for a [healthcare system] that recognizes and supports family caregivers.”
Shrontreau’s experience is the main storyline in a video series that is part of free, online, self-study Caregiver-Centered Care Foundational Education Module at www.caregivercare.ca. While Shrontreau is a fictional character, the issues and challenges that she faces are real. In Canada, 54% of family caregivers are women and over two-thirds are employed (75% of men, 69% of women) (2, 3).
Unfortunately, family caregivers continue to be overlooked and under-supported by the healthcare system (4, 5). Research indicates that family caregivers want healthcare providers to support them (5-7). Many healthcare providers are interested in supporting family caregivers but may lack the skills to effectively help family caregivers maintain their caring and own well-being (8, 9). Paramedics may not receive training to best support family caregivers.
The validated Caregiver-Centered Care Competency Framework, which consists of six domains (see Figure 1 and www.caregivercare.ca/competency-framework), works to address the gap in what family caregivers say they need from healthcare providers and the preparation of the healthcare workforce to meet those needs. Caregiver-Centered Care is a collaborative working relationship between families and healthcare providers in supporting family caregivers in their caregiving role, decisions about services, care management, and advocacy. The competency-based Foundational and the Covid-19 Caregiver-Centered Care Education Modules (www.caregivercare.ca/education) take about one hour to complete. They explore the role of healthcare providers in supporting the diverse roles, values, and needs of family caregivers. One paramedic completing the course states: “As paramedics, we help both patients and families, but often we feel like we have no tools to support caregivers when we see their stress. While we cannot solve everything the family caregiver needs, this course offers tools that we can integrate into our practice.”
The Caregiver-Centered Care Education Modules have been co-designed with over 100 multi-level, interdisciplinary stakeholders, including family caregivers, healthcare providers and leaders, not-for-profit community organizations, policymakers and influencers, researchers, and educators. Co-design helps to centre lived experiences of family caregivers while ensuring that the modules remain feasible, relevant, and useful to healthcare providers from diverse settings and organizations. Both Education Modules are relevant to existing paramedic competencies, can be used for self-directed learning, and have been awarded for continuing education credits for paramedics in British Columbia, Alberta, and Saskatchewan. Work is ongoing to have them awarded for credits across Canada. Evaluations show the success of the co-design process, indicating most learners are satisfied with the quality of the education and self-report significant increases in knowledge and confidence to work with family caregivers (10).
We need to build a better system of support for family caregivers due to their diversity and changing needs along the care trajectory (5, 11). A single course will not address all needs of family caregivers. Rather, it is one piece in a wide range of services and supports that are needed to make a collective impact. The Caregiver-Centered Care team continues to develop further modules, including Advanced Education for providers who work extensively with family caregivers and Champions Education for those who have opportunities to lead this education in their workplaces. While these Modules offer tools to support diverse family caregivers, ongoing research to understand and support the unique experiences of family caregivers is needed.
Shrontreau represents double-duty caregivers. Double-duty caregivers are family caregivers who are employed in the healthcare field while also providing care to a family member, chosen family, friend, or neighbor without pay. Juggling care at work and at home can be very stressful (12, 13). Dr. Parmar’s Research Team’s 2021 study of the impacts of COVID-19 on Alberta family caregivers indicated this might be further compounded by Covid-19. Worrying about getting infected by COVID-19 and passing the infection on to an ill or immunocompromised care-receiver led some double-duty caregivers to take leaves of absence or quit their healthcare employment. However, no studies have directly explored the impacts of Covid-19 on Canada’s double-duty caregivers. Dr. Parmar and her team, which includes Dr. Catherine Ward-Griffin who designed and validated the Double Duty Caregiver Scale, are doing a study to address this gap (See Figure 2). Using validated scales in the study, enables comparison of impacts of double-duty caregiving during COVID-19 with pre-COVID-19 results. The study, delivered on the secure REDCap platform until June 30, 2022, will take about 20 minutes to complete and is open to all health providers who are also family caregivers. If you are a double-duty caregiver, please participate and please share among your networks: https://redcap.link/doubleduty.
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