Healthcare providers work together to to bring family caregivers needs to light

Family medicine faculty member is leading efforts to provide support to an overlooked group of care providers

Danica Erickson, Department of Family Medicine - 20 January 2020

By 2013, Dr. Jasneet Parmar, associate professor with the Department of Family Medicine, had led many initiatives to find solutions to caring for seniors in hospital settings, an environment not designed to care for frail people with multiple chronic diseases and frailty. It wasn't until an unexpected comment from a community member that gave Parmar a complete change of perspective, putting her on a course of action to support a group of people crucial to supporting the health of many patients but continually overlooked by the care system: the family caregivers.

Despite intending to build a career in internal medicine, Parmar found the complexity and challenges she experienced untangling people's health problems during her seniors' care electives very rewarding. "The little things you do can make significant quality of life changes for seniors." Her last elective with the Northern Alberta Region Geriatric program (NARGP: now the Specialized Geriatrics Program) resulted in an opportunity to provide cover-off for summer holidays, and she never looked back.

Following the completion of the Care of the Elderly (COE) diploma in 1994, Parmar was able to move to a clinical- academic position within the NARGP. She took on the responsibility of the undergraduate training of medical students in geriatrics. Parmar's service related duties led to the position of site lead for the geriatrics program at the Misericordia Hospital from 1998 until 2010.

She credits Dr. Lee Green, chair of the Department of Family Medicine, and Dr. Jean Triscott, director of the department's Division of Care of the Elderly, with letting her take on two key roles. The first, in 2011, was being Medical Lead for Homecare and Transitions in the Edmonton Zone area, a position which she currently holds. Two years later, she was seconded as the Medical Director of the Covenant Health Seniors Network of Excellence in Health and Wellness, a position she stepped down from, in August of 2019, after six years. Her combined administrative and academic responsibilities made developing programs for seniors easier for her, adding a certain degree of rigour and giving her the advantage of being able to influence the system with greater stakeholder engagement. She was able to support and have direct involvement in developing successful healthcare programs for seniors.

It was during a search for community resources for caregivers that she had the conversation that would change the course of her focus and her work. When speaking with Anna Mann, who at the time was the Executive Director of Caregivers Alberta, Parmar recalls Mann telling her "'That's all good and well, but what you are doing is shifting care onto caregivers when caring for seniors.' She asked me if I 'had ever asked a caregiver how they are doing'."

Not long after her conversation with Mann, Parmar's parents moved to Edmonton from India. Her father was very frail, and both parents required a lot of support. It was then she understood what Mann had been telling her; caregiving itself may be causing issues for caregivers.

Caregiver support was a topic that was coming up more and more often, from staff and others in the healthcare system, so she decided to apply for a Canadian Institutes of Health Research (CIHR) grant to investigate this burgeoning need. In 2013, Parmar did a call-out to people she thought would be interested in being part of the study team. She had a great response: about 30 people contacted her, including clinical staff, researchers, managers, educators and policy makers. Following consultation, the group identified three streams of caregiver support to study: a dementia stream to be led by Wendy Duggleby, a palliative care stream to be led by Ann Syme, and a complexity and frailty stream to be led by Parmar and Nora Keating. The resulting application for the Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes study they developed received approval for a CIHR grant in 2014.

With funding in place and the research streams identified, a call went out for 50 people to participate in this study. Within three days, 120 people responded, most of whom were interested in the complexity and frailty stream. Rather than limit the number of people who could participate, a two-day meeting was held with 60 people in the complexity and frailty stream and 30 in each of the other two streams. The overwhelming message that came out of the two days was that little to nothing was being done to support caregivers from within the healthcare system. This spurred the team on to investigate further into what was needed for the healthcare system to support caregivers. "We are going to have to play a role. We are not going to be the only system, but there is a system that needs to integrate around family caregivers to foster resilience. And we have to be part of that system. We are a part of that system and have to examine what we are doing and how we are doing it. The symposium told us we are doing it very poorly." explains Parmar.

Thanks to a Northern Alberta Academic Family Medicine Fund (NAAFMF) grant and support from the Covenant Health Seniors' Network, they were able to host two symposiums, 2016 and 2017, in the following years to explore and identify needs and supports of family caregivers, each attracting over 100 participants.

The first symposium focused on supporting caregivers in acute and continuing care settings. Several themes emerged, with a major theme being: Stop Building a Better Caregiver, Build a Better System Around Us. The second symposium focused on what was needed to build a better healthcare system to support caregivers. Organizers and participants heard there was little to no education about caregiver needs in place for healthcare providers, so Parmar and the team narrowed their focus to what it would take to educate the healthcare workforce to support caregivers.

A subsequent literature review, environmental scan and a stakeholder engagement meeting took place, in 2018, with the help of a Campus grant uncovering the key areas of education in improving support for caregivers. Education on the topics of caregiver-centred care and competencies for healthcare workers was needed, so an additional CIHR grant application was made to identify and validate the core competencies needed to support family caregivers.

In March of 2019, with the support of a CIHR grant, they held a two day health workforce competency-based education conference with 50 key people, including Dr. Rhoda MacRae from the University of the West of Scotland, who has done extensive research about dementia caregiver support and has developed dementia education for healthcare workforces. The participants identified and validated six core competencies which are: recognizing and respecting caregivers; communicating with caregivers in a timely manner; partnering with caregivers; fostering resilience by assessing caregiver needs and supporting them; system navigation and access to resources; and looking at culture and context. With the competencies validated, the modalities will be developed. In addition to validating the core competencies, they looked at education modalities with the intent to implement and evaluate them in settings across the continuum of care and within educational institutions. Two grants, a Center for Aging + Brain Health Innovation (CABHI) Grant and a provincial grant from Alberta Health Services have made it possible for the study team to begin preparing educational resources based on the competencies identified.

During the literature review process, the Carer Support Needs Assessment Tool (CSNAT) was discovered. CSNAT is an evidence-based tool for assessing caregiver support requirements developed by UK-based Gunn Grande, and Dr. Gail Ewing. Thanks to a grant from AHS and support from the Covenant Health Network of Excellence in Seniors Health and Wellness, Grande and Ewing travelled to Edmonton to train the trainers on the approach behind this caregiver-led support needs assessment. They trained about 60 people across Alberta to deliver training on the use of the tool, which has been embedded into ConnectCare. A pilot of this CSNAT is being run with Homecare, which has received a Canadian Foundation for Healthcare Improvement (CFHI) award, and a grant has been obtained to develop a website to give open access to the resources.

A number of small grants has allowed the team to continue to expand the work in Alberta communities. One grant supports examining the interface between family caregivers and family physicians in four long-term care centres and building on that work, another grant has been received to introduce the CSNAT in long-term care centres. There are also grants supporting the investigation of the interface between family caregivers and primary care teams in Primary Care Networks in both urban and rural communities. It is a priority for Parmar to ensure physicians recognize the importance of this work and the role they can play to support family caregivers.

Now, with enough engagement and support they will be applying for larger grants to determine what family physicians need to be able to support family caregivers. She notes this is all-inclusive: for all caregivers that provide care, all settings, all ages of who we care for and all ages of caregivers.

Parmar is excited about the continuing tremendous level of engagement which has remained consistent, and the potential this work has to make a difference for the better. "We have two goals. We want to sustain care and we want to support the health and well-being of caregivers. Interventions have to capture both outcomes, and only then will we consider ourselves successful."