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Revolutionizing Neuropathic Pain Assessment: A Journey of Collaboration to Improve Rural and Remote Indigenous Healthcare

By Sarah Kasleder for SHRF

In the vast landscape of Saskatchewan, a research project is changing the approach to neuropathic pain assessment and management delivered to Indigenous communities.

Dr. Stacey Lovo and Dr. Gary Linassi were awarded the SHRF Excellence Award for the top-ranked 2022-23 Solutions Innovation Grant, researching and collaborating with Indigenous community members in neuropathic pain, particularly in remote Indigenous communities. Their dedication and passion for their work, along with many Indigenous community members such as Elder Rose Dorion and Knowledge Keeper Sally Sewap, was evident in a recent interview, shedding light on their research, collaborations, relationships, and their impact on healthcare.

Culturally Responsive Pain Assessment

Dr. Stacey Lovo

Dr. Stacey Lovo

Photograph: Provided by Dr. Stacey Lovo

Dr. Lovo began by explaining the background of this research. It all started when graduate student Tayah Zhang worked with an Elder and Knowledge Keeper in Pelican Narrows, focusing on the language and assessment of chronic back pain in the Cree language. Working together led to understanding how Indigenous patients in Saskatchewan might communicate their pain and how Western tools often failed to capture the whole picture. This idea expanded to examine this experience for people suffering from neuropathic pain, which is common for people with diabetes, nerve injuries, spinal cord injuries and other nerve-related conditions and which Dr. Linassi specializes in treating. They discovered that, in some cases, Western tools for assessing pain do not adequately capture descriptors commonly used by Indigenous languages. This revelation highlighted the need for a more culturally responsive approach to pain assessment, ultimately leading to better care.

Dr. Stacey Lovo explained, “Elder Rose Dorion explained that the 1-10 pain scale often utilized by existing pain assessment questionnaires may not resonate with community members. When we put this proposal together in partnership with Indigenous community member patient participants, we very quickly became aware that, in some cases, there may not be a word for pain. Pain may be communicated through a loss of function. Yet, we may not focus on that using existing pain assessment questionnaires. We have understood from the Elders on our team that Indigenous people may not complain of pain. They may be somewhat hesitant to reveal their pain, especially if they are afraid of being judged or questioned. Often Indigenous patients can feel a lack of safety to express themselves, and the consequence can be a lack of awareness of the true experience of pain felt by the patient.”

Dr. Lovo highlighted their research team's commitment to developing culturally responsive language approaches to address this issue further. She explained, "We hope to ensure pain questionnaires are responsive to specific cultures and languages. That will bring us closer to understanding pain from the patient’s point of view and understanding the barriers and challenges to responsive pain care.”

Dr. Lovo mentioned that their research team included Indigenous patient partners, including Elders such as Margaret Larocque, a Cree Elder, and Knowledge Keepers such as TJ Roy, a Métis Knowledge Keeper. Dr. Stacey Lovo highlighted, "Our research was driven by the needs and priorities of the participants, ensuring that our work remained relevant and responsive to the communities we partner with. Their involvement provided invaluable insights and will help to co-create a virtual assessment process tailored to aid in the management of neuropathic pain in rural and remote Indigenous communities.”

Dr. Linassi also highlighted that language from a culturally responsive pain assessment tool could be used to update assessment tools being used for other medical conditions. “There’s a great opportunity to see this as a stepping stone and modify many tools that healthcare providers currently use.”

Incorporating Virtual Healthcare

Dr. Gary Linassi
Dr. Gary Linassi, Photograph provided by Dr. Gary Linassi

As their research progressed, Dr. Lovo and Dr. Linassi recognized the need to embrace virtual healthcare as an essential component of their project. Dr. Linassi emphasized the importance of integrating technology into their approach. He said, "We've been doing this for quite a long time with telehealth, and obviously, our project is looking at how we can adapt the culturally responsive pain assessment through virtual methods and techniques. That's probably what's unique about our project here."

Their extensive experience with virtual healthcare, particularly in remote Indigenous communities, prepared them for the success of their research ahead. Dr. Lovo explained, "We started working with remote northern communities and the Peter Ballantyne Cree Nation back in 2015, and we did our first pilot with rehabilitation services in 2017. Peter Ballantyne Cree Nation has led the country using remote presence robotics."

Their prior work in virtual healthcare, even before the COVID-19 pandemic, laid a solid foundation for the current project. Dr. Lovo noted, "COVID pushed virtual care to the front, but Peter Ballantyne Cree Nation has been doing it for significantly longer than that, and so their expertise within their staff and community is exceptionally high."The Virtual Health Hub played a crucial role in this research, providing the necessary expertise in virtual care and robotic technology. Dr. Lovo acknowledged, "We're fortunate to be associated with the Virtual Health Hub with this research and Dr. Ivar Mendez, a member of this research team, so that we can make the best use of virtual care, best practices, and robotics advancements."

Their virtual assessment process involves meticulous coordination between healthcare providers, patients, and technology experts.

Strength in Collaborative Efforts and Building Trust

The enthusiasm they harboured for community partnerships was obvious throughout the interview, naturally leading to further inquiry about their collaborative efforts. Drs. Lovo and Linassi expressed deep appreciation for the individuals on the research team, emphasizing the diverse ways expertise, insights, and their lived journeys have enriched their research.

Some of the collaborators mentioned were Dr. Jaris Swidrovich, Dr. Veronica McKinney, Joseph Neapetung, Dr. Hamza Dani, Dr. Darren Nickel, Dr. Ivar Mendez, Briana Bowes, Dr. Veronica Campanucci, Elder Margaret Larocque, Knowledge Keeper TJ Roy, community partner Dianna Janvier, Travis Eveleigh, Rachel Johnson, and Camille Busby.

Dr. Lovo expressed her gratitude, “There’s a lot of people putting their minds together, which is really exciting, as nothing like this can be done in isolation. It is truly a collaborative effort, which is interprofessional in nature.”

The interview provided a glimpse into the intricate process of conducting virtual assessments in remote Indigenous communities. Dr. Lovo explained that their research coordinator, Briana Bowes, spends significant time building relationships with patients, coordinating appointments, and addressing consent and cultural considerations. Conversely, healthcare professionals at remote facilities work diligently to ensure a smooth virtual assessment experience. Dr. Lovo detailed: "We have a scheduling coordinator at the Virtual Health Hub, Briana Bowes, who makes personal first-person contact with every client working with us."

Dr. Linassi stated, "Care delivered virtually may not be the best medium for initially developing trust. Communication is a crucial element in building trust between healthcare providers and Indigenous patients. Using culturally responsive language and approaches is essential to establishing that trust and providing more effective care. That’s why the coordinators on the other end are vitally important to communicate that this will be safe."

Lastly, Dr. Lovo and Dr. Linassi shared their gratitude to SHRF: “We would like to add a thank you to SHRF. Without this funding, this can’t happen. I want to thank you for supporting this research and supporting us in working in partnership with community members.”

Dr. Lovo and Dr. Linassi's work provides hope to Indigenous communities to effectively communicate pain in their own language and access a healthcare provider where, as with many Indigenous communities, accessing healthcare and communicating healthcare needs remains challenging. Their work showcases the importance of technology, coordination, relationship, and trust-building in providing culturally responsive care. Their dedication to culturally responsive pain assessment and community-led research is changing the way healthcare is delivered to remote Indigenous communities, ultimately improving the quality of life for all those affected by neuropathic pain in remote areas.

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