The CREST.BD network and other research teams around the world such as the Spectrum Centre in the UK have developed a solid body of research evidence on effective self-management of bipolar disorder. What is needed now is better knowledge on who to move this evidence into action – that is, to get it into the hands of people with bipolar disorder, their healthcare providers, and supporters. Our Canadian Institutes of Health Research (CIHR) funded project: ‘Like a ship that’s always righting itself: Self-management of bipolar disorder, from evidence to action’ is designed to do just this.
We define self-management strategies as:
“Bipolar disorder self-management strategies are the plans and routines that a person with bipolar disorder uses to promote health and quality of life. Most strategies, regardless of whether they originate solely with the person with bipolar disorder or are developed in collaboration with others, can be considered self-management strategies.”
Self-management strategies are now widely recognized as playing a key role in improving health and quality of life for people who live with chronic conditions. Accreditation Canada’s Standard’s for Mental Health Services’ require support for self-management of health conditions. The importance of “involving people living with mental health problems and illnesses and their families in planning, and facilitating self-management” is also acknowledged under the Mental Health Commission of Canada’s third strategic direction to “Provide access to the right combination of services, treatments and supports, when and where people need them”.
Within this framework, and using over a decade of prior CREST.BD research into self-management and quality of life in bipolar disorder, we produced a new online Bipolar Wellness Centre. Our key community partner in the project was the Mood Disorders Association of Ontario (MDAO).
Specifically, we set out to meet the following objectives:
- Develop, within a Community Based Participatory Research (CBPR) framework, a new online Bipolar Wellness Centre that will allow people with bipolar disorder and healthcare providers to access evidence-informed research on effective self-management strategies for bipolar disorder;
- Design and evaluate, within a CBPR framework, the effectiveness of a range of interventions to support use of the knowledge and tools housed in the Bipolar Wellness Centre;
- Evaluate the use of the Bipolar Wellness Centre and the evidence housed in it.
Developing the Bipolar Wellness Centre
The website was designed in an iterative, community-engaged manner that was a process of collaboration between people who live with bipolar disorder, healthcare providers, our CREST.BD research team and the UBC eHealth Strategy Office. Drawing from diverse forms of knowledge and the expertise of the UBC eHealth Strategy Office team, a pilot version of the website was developed. To create the final version of the website, our team shared this pilot version, in collaboration with MDAO, with 44 people living with bipolar disorder who described themselves as regular Internet users across three locations in Ontario. Focus groups were held at the three locations, and we asked:
- What would keep you using the Bipolar Wellness Centre?
- Are there strengths in the design of the pilot version of the Bipolar Wellness Centre? What do you like about it?
- Are there any things you don’t like about the design of the Bipolar Wellness Centre?
- Are there particular things about bipolar disorder that we need to consider when refining the website?
- How do we make the website as accessible as possible to all people with bipolar disorder?
The CREST.BD team collaboratively analysed the findings from the events and shared the feedback with the eHealth Strategy Office web development team. Key points messages we heard included:
- Build a nautical theme into entire website across pages
- Create ability for users to self-rate the quality of the tools and resources; “star” system
- Create audio versions of large blocks of website text
- Build in “Bite-sized” blocks of information for users struggling with mood or concentration
Importantly, the Bipolar Wellness Centre houses self-management strategies for bipolar disorder divided across the 14 domains of quality of life identified in our prior research, which are accessible via three discrete formats: webinar, video, and text.
Webinars: the Wellness Centre Education Series webinars feature a CREST.BD expert sharing self-management information on each area of quality of life.
Videos: Short videos of approximately 2 to 4 minutes each, featuring actor and CREST.BD member Victoria Maxwell share everyday examples of self-management in action across 8 quality of life areas.
Text: Comprehensive written text give a fulsome summary in plain language of the best evidence-informed self-management strategies for each of the 14 domains of quality of life. An audio version of each text area is also provided.
A comprehensive evaluation of the impact of these knowledge dissemination strategies, as well as testing of the impact of in-person knowledge sharing methods (for example, workshop and an online Living Library’) will be completed in 2016.