Hundreds of clinicians, researchers and people with lived experience gathered in Montreal in September 2019 to highlight promising work in hepatitis C research and practice. The 8th International Conference on Hepatitis Care in Substance Users (INHSU 2019) showcased innovative models of care that support the delivery of hepatitis C treatment.
A major theme emerging from this work was the need for wholistic* models of care, moving beyond hepatitis C treatment and toward the integration of services attending to the emotional, physical, mental and spiritual health needs of people who use drugs. Community involvement in development and delivery of wholistic models of care was deemed essential to provide safe and responsive services for people who use drugs.
This is a critical message. However, significant barriers remain in providing such level of care, including systems of support for workers on the front line: peer workers and practitioners.
Community-driven wholistic models of care
Many presentations illustrated the significance of community involvement in developing and delivering wholistic models of care in hepatitis C treatment. Indigenous scholars and healthcare providers, including Dr. Alexandra King (Nipissing First Nation) and Elder Sharon Jinkerson-Brass (Key First Nation), discussed the necessity of trauma-informed care and Indigenous healing approaches when caring for Indigenous people with hepatitis C.
A case example of integrating Indigenous approaches to health and wellness into mainstream healthcare came from Dr. Stéphanie Marsan and Arlette Van Den Hende (Kanehsatà:ke First Nation). Through a partnership with the Onen’tó:kon Healing Lodge in Kanesatake, Quebec, clinicians at the addiction clinic of the University of Montreal Health Centre (CHUM) developed an understanding of Indigenous approaches to healing and the impact of colonization on health and wellness. With this knowledge, the CHUM altered how they engaged Indigenous clients during intake, privileging relationship building and hearing clients’ stories over gathering information on drug use. This community-driven collaboration facilitated a safe pathway to care and enhanced quality of treatment for Indigenous peoples.
Another example of the significance of community involvement in the development and service provision of hepatitis C care comes from Jennifer Broad of the Toronto Community Hep C Program. Based on her co-authored paper “From client to co-worker”, Jennifer’s presentation discussed peer workers’ essential roles in hepatitis C service provision, and also the need for meaningful investment in and treatment of peers within organizations. Peers offer a sense of safety for clients that cannot be minimized, so organizations need proper oversight – such as patient advisory boards – to ensure peer workers are meaningfully involved, compensated and supported.
These are just a few highlights from the presentations, which you can browse on the INHSU 2019 website.
The importance of community experience in the implementation of wholistic care
Although we heard powerful examples of community-driven whole-person models of care, presenters also highlighted significant barriers to implementing such practices. During a networking event for frontline workers hosted by CATIE and the University of Dundee, participants described how systemic and organizational barriers – limited financial and human resources, poor access to harm reduction care and fragmented health services – were hindering their efforts to provide wholistic care. Some service providers had successes to share on this front, and they offered advice, words of support and encouragement to those in the room.
Frontline workers and people with lived experience offer a real-world perspective on structural and organizational practices and policies that hinder and support the implementation of whole-person models of care. Community involvement in the implementation and evaluation of wholistic models of care is vital to improve understanding of the real-world conditions under which these models of care are delivered. If context is ignored, frontline workers and clients will continue to experience roadblocks to care, as fractured systems, policies and practices will persist.
What about care providers?
A key element in the implementation of wholistic care, often overlooked in research and practice, is the health and wellness of frontline workers. Burnout, compassion fatigue and vicarious trauma will likely be experienced among care providers. They deserve our attention, especially during the ongoing opioid overdose crisis.
People affected by structural violence and social vulnerabilities need the services they receive to be safe, responsive, empowering and collaborative, as outlined in trauma-informed care principles. However, care providers experiencing burnout and vicarious trauma may not be able to support clients’ emotional safety, potentially (re-)traumatizing clients. For example, increasing staff shortages and caseload demands, compounded by attending to complex grief and trauma, may compromise frontline workers’ ability to foster safe, therapeutic relationships and to provide collaborative services. Interactions may be rushed, focusing on behavioural risk management rather than client priorities. These forms of provider-client interactions disempower clients by diminishing their sense of autonomy and power over their own health and wellness.
Systems of support for care providers, such as ongoing reflective supervision, peer support, self-care, education and training, may be vital in reducing feelings of isolation, psychological distress and vicarious traumatization. This, in turn, may reduce the risk of re-traumatizing clients and staff turnover. Yet, we lack resources and information on what systems of support are needed and how to properly deliver and sustain this practice. This needs to be a priority area for implementation research. Care providers are an integral part of service implementation, and I am hopeful this will be given greater consideration within service design and evaluation.
Looking ahead to INHSU 2020
The annual INHSU conference offers space to foster these discussions on implementation and presents opportunities to learn from organizations that have overcome structural and organizational barriers. I am optimistic that the next INHSU conference in 2020 will again bring together researchers and community to help support organizations implementing wholistic models of care – including systems of care for people on the front lines.
*We used the term ‘wholistic’ as Elder Murdena Marshall and Elder Albert Marshall of Mi’kmaw Nation underscore that wholistic reflects ‘whole’ where holistic implies ‘hole’ (Marshall, Marshall & Bartlett, 2015).
April Mazzuca, MSW, MSc, is a PhD candidate with the Cedar Project at the University of British Columbia School of Population and Public Health. Her PhD research explores the impact of the Cedar HCV Blanket Program on facilitating hepatitis C treatment among Indigenous people who use drugs in British Columbia, Canada.