Mental Health & Addiction
SET for Health
Help for People Living with Schizophrenia in the Community
People living with schizophrenia are taking up to 15-30 years to obtain the right combination of supports and self-management strategies to recover a life of quality. They experience stigma, marginalization and healthcare systems that focus on symptoms – all of which can undermine their resilience or capacity to manage their health condition(s). Families and healthcare providers are often challenged to maintain relationships and access interventions for this group. The situation can be complicated by people believing they do not have an illness requiring treatment, often as part of the illness itself, caught in a revolving door of hospital readmissions.
People living with schizophrenia tend to have 20 percent shorter lifespans than the general population and more years lost than any other mental illness. They often live with multiple health conditions, including cardiovascular disease, diabetes, and chronic lung disease. While affected individuals make up just 1 percent of the Ontario population, people living with the spectrum of schizophrenia make up 1.6 percent of Ontario’s hospitalizations. Further, this group experiences the longest length of stay in acute care.
“We know clearly that medication and psychosocial education alone are insufficient to advance the lives of this disadvantaged group,” says Dr. Susan Strong, an occupational therapist researcher at St. Joe’s Schizophrenia & Community Integration Service (SCIS) and an associate clinical professor in the School of Rehabilitation Science at McMaster University.
Faced with these challenges and gaps in care, Dr. Strong and a team of clinician researchers have focused on developing new methods and strategies based on Self-Management Support, with the goal of helping people to thrive and become managers of their own health conditions in collaboration with a support network.
Self-Management Support (SMS) refers to a group of interventions designed to assist people to live with their health conditions and better manage their health, to live fuller, healthier lives. It focuses on changing health behaviours, building self-efficacy, and building support networks. Delivery of SMS is both an approach to care and the strategic use of tools and techniques. SMS recognizes that clients/patients ultimately control health decisions, what they do in their lives, and out of necessity, need to become the expert on the management of their own recovery.
Dr. Susan Strong
Dr. Susan Strong
“SMS takes on additional meaning for people with schizophrenia to become the principal health managers. Supporting self-management is one option for addressing health equity and transforming healthcare into collaborative partnerships.”
Coming from the chronic disease prevention and management field, SMS is now being applied to schizophrenia. Schizophrenia, like all chronic health conditions, affects every part of life. To live well with schizophrenia requires not only learning to take care of the illness itself, but impacts routine activities, roles, responsibilities, relationships, and sense of self, bringing a variety of emotions to be managed. When someone has schizophrenia, the whole family is living with schizophrenia.
Dr. Strong believes that by increasing access to strategic, personalized self-management learning opportunities, peoples’ prolonged paths to recovery can be shortened.
Self-Management Support using the SET for Health Approach
With financial support from the Dr. Ian and Shirley Rowe Research Fund to Explore Innovative Ways of Managing Psychosis in the Community, Dr. Strong’s team worked with clients, providers, and administration at two St. Joe’s programs: Schizophrenia Outpatient Clinic (SOC) and Transitional Outpatient Program for the Schizophrenia Service (TOPSS). Together they co-designed an accessible, practical, targeted approach to SMS over several years of field testing. Called the SET for Health approach, it is tailored to clients’ life challenges and clinicians’ working realities. SET is short for Self-management Engagement Together for Health. Providers hold regular, intentional self-management conversations, often supported by interactive SET for Health tools, that are embedded into the care process. Providers coach clients pursuit of personal recovery goals, building a self-management toolkit, while managing their health and health conditions.
In 2017, the research team launched a mixed methods 3-year study on the feasibility and value of the SET for Health approach. This involved training a group of SCIS clinicians to build their skill sets to deliver SET for Health and more actively engage clients in their own care. The study results showed tremendous positive benefits for clients, providers, services, and healthcare. The study documented benefit to clients’ illness severity and management, social and role functioning, and functional recovery. These benefits held up regardless of clients’ age, education, years living with schizophrenia or how long they had known the provider. This finding, and the fact that with this approach, they cut in half the industry benchmark for dropouts in a diverse group – all indicated that SET for Health is accessible to most people with schizophrenia coming through St. Joe’s doors.
Dr. Susan Strong
“Not only did the study establish that this intervention can be done with this population in real world routine practice, the study demonstrated proof of concept. In other words, we saw client engagement, voice and collaborative learning spaces created for both client and provider by holding self-management conversations, often supported by the interactive tools developed over the past 15 years with SET for Health.”
Further, findings support that if the SET for Health approach was broadly implemented, it has the potential to reduce burden on healthcare by impacting healthcare budgets, improving patient flow and care efficiencies. With assistance of the McMaster’s Centre for Health Economics & Policy Analysis (CHEPA), Dr. Strong calculated a healthcare savings of nearly $2 million, or $51,309 per person. The savings were based on a comparison of one year before intervention to one year after of study participants’ utilization of healthcare. Study participants experienced a reduction of nearly 90 percent in mental health emergency visits, and a reduction of over 90 percent in hospital readmissions and days spent in hospital.
During these times of pressures to increase patient flow so more people can access services while operating within existing resources, the SET for Health approach to SMS is worth considering. Using this approach, programs have been able to reduce levels of service intensity. For example, instead of seeing someone three times a week they are seen once a week. Clients have been discharged from intensive case management to monthly support services or care by a family practice team.
“When all is said and done, although there can be increased workload burden upfront with staff training and client coaching, there are long term effects to reducing the healthcare system burden as a whole that are sustainable with client engagement, voice and participation in care,” says Alycia Gillespie, a registered social worker on the SET for Health team and Manager at St. Joe’s Schizophrenia & Community Integration Service (SCIS).
Equipped with a clinically tested, potentially cost-saving intervention, valued by both clients and providers, Dr. Strong and her team identified a need to train more interdisciplinary health care providers to implement self-management support using the SET for Health approach in their practices.
Dr. Susan Strong
“Our goal with the SET for Health training was to equip clinicians with the expertise needed to confidently use self-management support in their practice.”
In 2023, additional funding from Dr. Ian and Shirley Rowe supported the development of an on-line SMS training program. The idea was to create a flexible, accessible training series that would give learners the opportunity and support to try out in their practice new ideas, strategies, techniques as they were introduced in training. The team began by translating education materials into a virtual package with a self-serve 24/7 webpage. Working with The Research Institute, they built an online training portal, conducted usability testing, and refinement. By January 2024, Dr. Strong and her team began training their first remote cohort of clinicians with additional funding from an Independent Medical Education Grant by Boehringer Ingelheim Canada.
The training program consists of six modules that each feature a bi-weekly synchronous workshop via Teams with preparatory guided videos and supplementary materials available virtually for 12 weeks.
“By training more clinicians to deliver SET for Health, we are setting the stage for future rigorous research to demonstrate the effectiveness of adding SMS to routine practice in multiple workplaces,” says Dr Lori Letts, an occupational therapist on the SET for Health research team and faculty member in the McMaster School of Rehabilitation Science.
A pre-post training survey revealed significant changes in participants knowing enough about self-management support to be able to use it in practice and feeling confident in applying self-management support in their practice. Participants gave high marks for the instructors, the learning content, and accessibility of the training.
“I enjoyed the different intervention without medical model focus,” wrote one participant. “The focus on partnership and looking at health versus just diagnosis I found has helped with provoking a different conversation and learning a better understanding of how the client understands their mental health.”
“I enjoyed being on this journey with multiple other clinicians and being able to discuss my challenges and experiences of doing SMS in practice,” wrote another participant.
Since the success of the first training series, Dr. Strong and her team continued to refine the SET for Health training based on participant feedback. The main improvement was instituting a formal manager orientation with on-going support meetings to keep managers in the loop, and support problem-solving, while hearing peers’ ideas for integration into care processes.
“The opportunity for a few of our clients who are doing incredibly well to just move them that little bit further along because of them taking back that control… a lot of our clients have been deemed treatment incapable [on CTOs]. There’s been so much coercion actually getting them into treatment, so being able to reframe it in a different way – the potential is just so high,” commented Candice Babbey, Manager of St. Joe’s Haldimand Norfolk Assertive Community Treatment Team.
The next training series is slated to begin September 2024 with 65 registered trainees.
“We’re excited to continue training clinicians to provide self-management support using the SET for Health approach,” says Dr. Strong. “We strongly believe that this intervention has incredible potential to improve client quality of life and transform healthcare.”
To learn more about future clinician training opportunities for the SET for Health approach, visit research.stjoes.ca/SETforHealth.
This research was made possible through the generosity of:
Dr. Ian & Shirley Rowe Research Fund to Explore Innovative Ways of Managing Psychosis in the Community
Independent Medical Education Grant, Boehringer Ingelheim Canada