The purpose of the focus groups this morning was to gather this information from participants about their own experience in recovery in hope of writing this up in a study. As part of this process, we need to inform ourselves on the how the term ‘recovery’ is conceptualized in the field of mental health at large and in especially in populations with BD. The process was initiated by Dr. Erin Michalak. It has been an incredible learning experience for all involved. Dan Blagrund did much of the initial work. The process has been guided by very stimulating conversations between myself, Dan, Erin, and now Vytas based on what we have read. We hope to turn this in to a review paper pointing to the paucity of research on recovery in BD and include a call for further research. What is a lit review? Involves gathering all of the literature written on a topic and synthesizing the findings. Getting everything together in one place to evaluate where the understanding of this topic is at. Is important as a context for research projects and for identifying areas in which more research needs to be done.
The literature search began rather informally, but we are now in the midst of doing a rigorous systematic search. The names of these databases might not mean anything to you, but they are huge archives of academics papers. By searching them with the proper terms and limits, we have a high likelihood of picking up everything that has been written on this topic. The informal search was done using variants of bipolar disorder (e.g. cyclothymia, manic-depression) and recovery. Now that Vytas is involved, we are creating an expanded/refined list of search terms. For bipolar, we are now excluding bipolar spectrum because ?? To fully capture the recovery end, we are now looking at a list of terms: collaborative recovery model, mental health recovery, recovery oriented services, social functional recovery. We will also look at ref lists of these papers to make sure we have everything. This is called a secondary reference review.
Qualitative: What is it? Traditional research uses closed questions and scales to quantify answers into numerical values which are then analyzed. This is considered the gold standard in research, but can fail to capture the complexity of human experience. Qualitative research is more labour intensive and is done on smaller samples. Ususally involves focus groups and interviews. The transcriptions are then analyzed for common themes. Qualitative research seeks to explore, understand, and represent the subjective experiences of people. Detailed, holistic, multi-faceted. Excellent for initial exploration of a topic in order to better develop quantitative questions and scales. Mixed methods included qualitative and quantitative Need to look at BD samples specifically because they may have concerns that are disorder specific. Mixed samples include diverse range of disorders including ADD, Autistic, and PTSD. Currently we have a list of over 60 number of papers on Mendeley. Managed by Dan. Once comprehensive lit search is completed, we will narrow down to about 20 core papers
Recap: Consumers began to define recovery in a new way: dynamic, defined by the individual, enjoy a positive sense of self even when symptomatic Clinical recovery is defined by measurable progress in areas such as time between episodes, severity of symptoms, and number of hospitalizations.
Medical view of BD is of a severe and persistent mental illness that requires life long medication. In general, research on outcomes is consistently negative and show high levels of affective distress (check my BD paper about number of weeks spent in depressed/manic/subsyndromal states). 6 th most disabling condition, 2.5x more likely to die than general population due to suicide, accidents, and co-morbid illness. Jonsson: disordered thinking, fluctuating energy levels, fear of episode, insecurity, uncertain future.
Clinican’s illusion: exposed to serious and persistent illness on a daily basis, tendency to assume this is the way the illness presents in the general population. Negative correlation between consulting a clinician and managing an illness successfully (Slade). This leads to the clinician communicating low expectations of a good outcomes. Where are the patients that are doing well? There are very few studies that look at populations that are doing well. Are they not engaged in the health care system? Less among older population: have they died out or recovered? Lack of research. Convenience sample see Russell
A number of papers have come out of the data collected by Erin and the CREST BD team. The data looks at people that are living well with the disorder and what strategies they use to manage
His overview of the studies done includes Russell & Browne and Michalak’s work. Ambivalent approaches: these were important, but also affected their life in somewhat negative ways. Drawing back from stressful or excessively pleasurable activties in order to stay well. Was experienced as a loss, hence the ambivalence. Required willpower. Medication, helpful, but negative impact due to side effects, struggled with benefits and costs, true self vs. medicated self; prior illness vs wellness ambivalent feelings stability, vs. pleasure of mania, sense of learning how to cope, but not recovered from illness.; sense of identity:struggle not to define themselves or have others define them by their illness, careful about who to disclose to; Helpful: Understanding-accepting they have a problem; educating themselves, gaining insight into themselves and their lived experience; Life-style fundamentals: activities that promote balance and stability; work-home work-social life balance; Support and Companionship: Social Change: stepping outside of their comfort zone, improving communication skills, felt that their mental illness had made them a better person e.g. more compassionate and tolerant.
Goal of study was to elicit the expertise of those with lived experience of BD. Acceptance of diagnosis: many were initially misdiagnosed, a proper diagnosis came as a relief; Mindfulness-being aware of how they were responding to their physical mental, emotional, social and physical environment, maintaining vigilance; Education: books internet etc..also learning from each episode of their illness; Identifying triggers esp sleep, stress, hormonal fluctuations, change of season, recreational drugs; Recognize early warning sign: notice small changes in sleep, thought, moods, and energy levels, by the time the bigger changes e.g. risky behaviour occurred, people were well into an episode; Treatment: correct medication vital, 80% of sample took mood stabilizers everyday. Also alternative therapies e.g TCM, naturopathy, psychotherapy etc.. Access Support: range of networks e.g. family, friends, community groups e.g book clubs and also mental health groups; Stay well plans formal or informal written document Formal or informal plan e.g Wellness Recovery Action Plan-identifying triggers, and create a plan for what to do when unwell, usually involves support system. This data demonstrated that people can stay well when they receive appropriate treatment and demonstrate self-care. Participants learned what worked for them
Strong correlation with Russell and Browne. Even people with a painful history of BD can experience a sense of agency. Discovering FOR THEMSELVES what works. There was criticism of Russell’s study because they did not measure the mental health of participants, therefore HOW did they know the participants were actually living well with BD. In the Crest study, participants were given several measures including the Multidimensional Scale of independent functioning, the Hamilton Depression rating scale and the Young Mania rating scale before and during the data collection to make sure they were Participants described sleep as essential to their mental health. Ideally 8-9 hours a night, including waking rest (e.g. veging on the couch). Exercise-eating healthy foods, supplements, monitored overuse of substances-e.g. booze, MJ, sugar, caffeine; Self-monitoring; moods and prodomes, adjusting medication; Reflective and Meditative practices: yoga, Tai Chi, journaling, inspirational reading and praying, creative pursuits e.g. painting; Understanding BD: books, internet, groups, relying on family and friends to help them identify when they were not doing well; Connecting with others: social outings, helpful relationships with practitioners, volunteering
There has been a tremendous amount of recovery research done in schizophrenic and mixed samples. A review of the British Literature alone (Bonney) compiled 100+ papers examining consumers perspectives on recovery. We have only a handful that are BD specific and it is incredibly important that we further research in this area because those with BD will have unique challenges and strengths. Because current research is so pessimistic re BD, and clients themselves may suffer significantly, it is vital to gather what a life worth living means to those with BD. This can be translated into best practice for the treatment of BD. Then we can focus on what I perceive to be the silver lining of this illness: a rich lived experience, creative capacity, unique ability to soar….The data you have given us today will be an invaluable step forward in addressing this research gap. Thank-you.
Bipolar Disorder and Recovery
Bipolar Disorder and Recovery Sara Lapsley CREST BD
BD and Recovery: A Literature Review <ul><li>AIM </li></ul><ul><li>-A review of qualitative empirical studies that look at what recovery means to people living with BD </li></ul><ul><li>CENTRAL QUESTIONS </li></ul><ul><li>-What common recovery themes have studies identified in the lived experience of those with BD </li></ul><ul><li>-How do people get and stay well? </li></ul><ul><li>-What does it mean to recover? </li></ul>
The Literature Search <ul><li>Databases </li></ul><ul><li>-Medline, PsychInfo, CINHAL, EMBASE, AgeLine, Cochrane Database of Systematic Reviews, DARE, Web of Science </li></ul><ul><li>Search Terms </li></ul><ul><li>-Bipolar Disorder (including mania, hypomania etc…) AND recovery </li></ul>
The Literature Search Con’d <ul><li>Methods </li></ul><ul><li>-qualitative </li></ul><ul><li>-mixed methods </li></ul><ul><li>-first person case studies </li></ul><ul><li>Samples </li></ul><ul><li>-BD only </li></ul><ul><li>-samples that include participants with a range of Mental Illnesses, but have analyzed BD data separately </li></ul>
What is Recovery? <ul><li>Two definitions </li></ul><ul><li>Consumers: subjective process </li></ul><ul><li>Clinical: measurable outcomes based on functioning </li></ul>
Literature Specific to BD <ul><li>Clinical Literature: Poor Outcomes </li></ul><ul><li>Subjective Reports of Consumers with BD </li></ul><ul><li>Experience life as chronic and unstable </li></ul><ul><li>Circumstances out of their control </li></ul><ul><li>Life is characterized by loss and deficit </li></ul><ul><li>(Lim, Nathan, O’Brien-Malone, & Williams, 2004) </li></ul>
Clinician’s Illusion <ul><li>Clinicians are exposed to a biased sample </li></ul><ul><li>Basing judgment on functional outcomes creates pessimism </li></ul><ul><li>Instills belief in clients that they can’t recover </li></ul><ul><li>Where are the clients that are doing well? </li></ul>
Recovery Literature Specific to BD <ul><li>CREST BD Wellness Data </li></ul><ul><li>Russell: Staying Well (2004) </li></ul><ul><li>Mansell et al: Process of Recovery in BD (2009) </li></ul>
Mansell et al. <ul><li>Compiled qualitative studies on BD & Recovery to date </li></ul><ul><li>Collected original data </li></ul><ul><li>Ambivalent Approaches: avoidance of mania, medication, prior illness vs. current wellness, sense of identity </li></ul><ul><li>Helpful Approaches: Understanding, Life-style fundamentals, Support and Companionship, Social Change </li></ul>
Russell & Browne: Staying Well with BD <ul><li>Acceptance of Diagnosis </li></ul><ul><li>Mindfulness </li></ul><ul><li>Education </li></ul><ul><li>Identify Trigger Factors </li></ul><ul><li>Recognize warning signs </li></ul><ul><li>Managing sleep and stress </li></ul><ul><li>Make lifestyle changes </li></ul><ul><li>Treatment </li></ul><ul><li>Access Support </li></ul><ul><li>Stay Well Plans </li></ul>
CREST BD data: Tips from the Experts <ul><li>Sleep, Rest, Exercise, & Diet </li></ul><ul><li>Ongoing Monitoring </li></ul><ul><li>Enacting a Plan </li></ul><ul><li>Reflective and Meditative Practices </li></ul><ul><li>Understanding BD and Educating Others </li></ul><ul><li>Connecting with Others </li></ul>
Integrating Recovery in Mental Health Services <ul><li>Findings from studies such as this can help clinicians promote: </li></ul><ul><li>empowerment </li></ul><ul><li>proactive wellbeing strategies in their clients </li></ul><ul><li>a strengths based approach </li></ul><ul><li>A lot of talk in Mental Health Services, need more action. </li></ul>
Future Directions <ul><li>Need for more research to: </li></ul><ul><li>Identify overlap with mixed samples </li></ul><ul><li>Identify challenges/strengths in recovery unique to BD </li></ul><ul><li>Mood switch </li></ul><ul><li>Creativity/achievement </li></ul><ul><li>Mania/hypomania </li></ul><ul><li>Cognitive decline </li></ul><ul><li>Sleep Hygiene </li></ul><ul><li>Goal orientation/reward sensitivity </li></ul>