Recovery in people with bipolar disorder: What does it mean, and what does it matter?
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This document discusses recovery in bipolar disorder. It begins with an overview of bipolar disorder and notes its prevalence, chronicity, disability, and high rates of comorbidities like substance abuse and anxiety. It then discusses gaps in bipolar research, including a lack of qualitative studies and focus on quality of life outcomes rather than just symptoms. The document outlines the speaker's research questions on factors influencing quality of life and recovery in bipolar disorder. It describes their community-based participatory research approach, including engaging people with bipolar disorder. Finally, it summarizes two studies on understanding recovery from the perspectives of those with bipolar disorder and exploring the impacts of constructing narrative accounts of recovery.
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Recovery in people with bipolar disorder: What does it mean, and what does it matter?
- 1. Recovery in people with bipolar disorder: What does it mean, and what does it matter? Erin Michalak, PhD Department of Psychiatry University of British Columbia Vancouver, Canada
- 5. The spectrum of bipolar disorder Mania Hypomania Normal Depression Severe Depression Normal Cyclothymic Cyclothymic Bipolar II Unipolar Bipolar I Mood Personality Disorder Disorder Mania Disorder Variation Goodwin FK, Jamison KR. Manic-Depressive Illness; 1990.
- 6. Bipolar disorder: the low down • Common - robust epidemiological studies suggest a lifetime prevalence rate of 1-2%, but bipolar spectrum disorders will affect many more • Complex, chronic, highly disabling • Striking comorbidity, particularly with substance abuse (50-60%) and anxiety disorders (80%) • High rates of suicide • Serious public health concern
- 7. Gaps in the BD field Conducted within framework of a biomedical model: • Gap: majority of research quantitative - scant qualitative, little community-based research • Gap: psychosocial determinants of outcome relatively neglected • Gap: narrow measurement of outcomes - little focus on QoL, wellness, resiliency, strengths
- 8. Questions that shape my program of research What psychosocial factors insulate people with BD from the potential havoc the condition can wreak, and what factors make them more vulnerable? What are the determinants of QoL, wellness and recovery in people with BD? What can we do clinically to improve psychosocial outcomes?
- 9. My intentions for today: 1. To describe our team’s ‘community-based participatory’ approach to research 2. To tell you about two studies of recovery in people with BD and give you some headline results from them
- 10. My intentions for today: 1. To describe our team’s ‘community-based participatory’ approach to research 2. To tell you about two studies of recovery in people with BD and give you some headline results from them
- 12. Community-based participatory research methods Recovery Example CBPR techniques: 1. Annual CIHR-funded Stigma Community Engagement Event 2. People with BD as co-authors, co-investigators, grant-holders, QoL ‘knowledge brokers’ 3. Community Consultation Group 4. Community Advisory Group 5. CIHR-funded Café Scientifques
- 13. Community-based participatory research methods Recovery Example CBPR techniques: 1. Annual CIHR-funded Stigma Community Engagement Event 2. People with BD as co-authors, co-investigators, grant-holders, QoL ‘knowledge brokers’ 3. Community Consultation Group 4. Community Advisory Group 5. CIHR-funded Café Scientifques
- 14. 2011 Community Engagement Event: Exploring creativity in bipolar disorder
- 18. 1. 2011 Consultation Events 2. 3.
- 21. Screening Program • 7:00pm Welcome • 7:10pm Film Screenings Crooked Beauty by Ken Paul Rosenthal Crooked Beauty A powerful documentary that explores understandings of creativity and bipolar disorder. (2010, USA) Why? by Carol Halstead A woman who at 60 years of age finally has a chance to talk about her life through art. (1993 Canada) Chomavision by Bruce Saunders An 86-year-old lifelong artist whose story is archetypical of a life lived with creativity and bipolar disorder as major drivers. (2011, Canada) Chomavision • Each film will be followed by a 15-minute post-screening discussion facilitated by Bruce Saunders and Erin Michalak. Why?
- 24. Methods 22 participants, 50% BD type I, 50% BD type II/NOS, mean age 42.7 years, 4 men, 17 women, 1 transgendered Quantitative data collected How does BD enhance/add to creativity? Do different mood states have different impacts on Divided into four focus your creativity? groups, 1.5 hours How does creativity relate to treatment? Tape recorded, thematic Do BD medications help or hinder creativity? analysis. Also graphically recorded Are there ways of tailoring treatments for BD that could help you express your creativity?
- 26. The Creative Life: A Night of Live Music Celebrating BD
- 27. My intentions for today: 1. To describe our team’s ‘community-based participatory’ approach to research 2. To tell you about two studies of recovery in people with BD and give you some headline results
- 28. Community Consultation Day 2010: “Through my eyes: the concept of recovery in people with bipolar disorder Dr. Erin Michalak, Dr. Rachelle Hole, Ros Irving, Dr. Vytas Velyvis
- 29. Method Cecil Green House, University of British Columbia 30 participants – 5 focus groups o Individuals with BD/family members “What does recovery mean to you as a person living with BD or as a family member of someone living with BD?” “What strategies have helped or hindered your recovery or the recovery of your family member living with BD?”
- 30. Analysis and results Transcripts coded manually and analyzed using thematic analysis Within the „meaning of recovery‟ theme, four subthemes identified: “Re-thinking the Language of Recovery” “Shifting the Framework” “The Art of Managing BD” “Understanding the Journey of BD”
- 31. Results cont “Re-thinking the Language of Recovery” Dissatisfaction with term recovery, majority felt it was inaccurate or unhelpful “I think management is a really good word … like to be in recovery sounds like, you know, it happens, you get better, Ta Da. And that’s not the case because it is chronic. You’re sort of in-between recoveries” Jamie Livingston, CREST.BD member
- 32. Results cont Vytas Velyvis, CREST.BD member “Shifting the Framework” Focus on wellness versus illness, emphasis on QoL, happiness, engagement with life “…This is the most stable I’ve been in years since being put on lithium and it’s hard. It feels bland. It feels like cafeteria food. You know, I’m being sustained but I’m not, I don’t feel nourished.”
- 33. Results cont “The Art of Managing BD” Three sub-themes: of life: “Sense of Self”, “The Role of Loss and Acceptance” and “Letting Go of Stigma” “taking responsibility for yourself”, “empowering one’s self” and “growing” Ros Irving, CREST.BD member
- 34. Results cont “Understanding the Journey of BD” Three sub-themes: of life: “Sense of Self”, “The Role of Loss and Acceptance” and “Letting Go of Stigma” “I would say that it isn’t necessarily going back to who you were, but it’s developing a new life, it’s transforming, growing…and rebuilding a whole new life. So there is hope but it’s moving forward as opposed to trying to get the past back. That’s my interpretation of recovery”. Sara Lapsley, CREST.BD member
- 35. www.crestbd.ca
- 36. CREST.BD team member Ros Irving “Constructing recovery narratives in people with bipolar disorder: Exploring potential impacts.” Rosalind Irving, Dr. Erin Michalak, Dr. Rachelle Hole
- 37. Recovery Narrative project We are made up of stories but many have lost their story (Jean Houston, 2009) A narrative of possible recovery is necessary if a person is to recover, but it is the fact of its being a shared narrative that matters (Bruner, 2002)
- 38. Methods Research Objective: Does clinician-guided construction of recovery narratives in people with BD impact subjective recovery? 10 participants with BD type I or II 3 x 1.5 hour sessions Audio-recorded Satisfaction, recovery and QoL assessed pre and post intervention
- 39. Constructing the narrative Elicited through normal psychotherapeutic process Rogerian approach of unconditional positive regard Client encouraged to tell own story, prompted by questions Clinician explored significance of events, note-taking Clinician underlined salient points from previous session for possible further exploration in sessions 2 and 3 Story continued with clinician prompting client to explore significance and meaning Notes provided to client, who then wrote up own narrative
- 40. Purpose of the recovery narrative (for clinician) Can help the therapist become aware of the client’s view of the cause of BD, potentially resulting in more effective interventions Therapist’s understanding and empathy may be deepened Potential impact on therapeutic alliance
- 41. Purpose of the recovery narrative (for client) To piece together a coherent story of self (since identity development may have been interrupted and sense of self damaged) To help develop a sense of agency, reduce aloneness, process grief To give suffering new meaning since it can help others by providing role modeling and hope. To counteract external definitions of self based on the illness (leading potentially to self-stigma)
Editor's Notes
- Erin: How we are doing in Canada with this population? This year is especially innovative.Sharon: Below is paragraph from our press release (you will not need all of this probably…) – Bipolar disorder and creativity: Bipolar disorder, previously known as manic depression, is a condition characterised by repeated episodes of depression and abnormally elevated mood. Over half a million Canadians suffer from the condition. Although BD is often associated with disability and poor quality of life, it is also, for some people, associated with positive aspects of life, such as increased creativity. When asked about the advantages of having BD, over 80% of people describe creativity as one of the benefits. Bipolar disorder is often characterised by periods of highly creative thoughts and behaviours; many individuals living with BD choose careers in a creative field and some achieve prominence in creative pursuits. While we know that many people who have BD are creative, or that many creative people have BD, very little research has explored this relationship. Therefore, in the spring of 2011, CREST.BD is planning a series of innovative 'community consultation events' to begin to fill this gap. Event 1: Movie screeningBruce Saunders, passionate originator of the widely popular Movie Monday events in Victoria, B.C. (www.moviemonday.ca), will lead our audience through an evening of film screenings beginning with the powerful documentary Crooked Beauty (www.crookedbeauty.com) which explores understandings of creativity and BD. Following, two film shorts by local British Columbia filmmakers which highlight the influential role of creativity in mental health, will also be screened: Chomavision about an 86 year-old lifelong artist whose story is archetypical of a life lived with creativity and BD as major drivers, and Why? about a woman who at 60 years of age who finally has a chance to talk about her life through art. The films will be followed by a post-screening dialogue session facilitated by Bruce Saunders and Dr. Erin Michalak. The evening will provide a venue for the community to engage in discussion about creativity and BD, with a focus on how wellness is nurtured through creativity, and possible alternatives to the stigmas and stereotypes associated with BD as represented in the media.
- Event 2: On April 1st CREST.BD will be holding a Community Consultation Day on UBC campus where we would like to hear from creative people (musicians, artists, writers, performers, designers, etc.) who live with BD. The day will begin with a series of focus groups designed to explore the factors which encourage or challenge the expression of creativity. Following lunch, there will be a series of short presentations from the research team and a brainstorming session facilitated by a graphic artist. Artists with BD will also be invited to display their artwork at the event. Participants will be paid an honorarium for their involvement, as well as out-of-pocket expenses.
- Event 3: Co-hosted by CREST.BD and the Sean Costello Memorial Fund for Bipolar Research (www.seancostellofund.org), the final event will be held on the evening of April 1st at Chapel Arts (www.chapelarts.com), a unique, community-based multi-use event space. The evening will be a celebration of the creative BD community and the positive role creativity plays in the journey of recovery of this illness. During the event, community members will have the option of creating digital (audio or video) or written feedback on their perspectives on musical creativity and BD. The evening will feature DJ sets and live musical performances, focusing on the theme of BD and creativity. The two-story venue includes a full-service bar and provides plenty of room for dancing, networking and enjoying the 'sounds' of BD.
- The “disagreement with the concept of recovery” theme refers to participants’ dissatisfaction with the concept of recovery. The majority of participants living with BD stated that they did not like the term recovery and felt that it was inaccurate and/or unhelpful to them. This theme points to the significance of language and it’s meanings in understanding the lived experiences of health and well-being for people living with BD. A number of people mentioned that “language makes a difference” and that “language can support the actual process [of recovery]” (FGC p.22). Language is powerful and the dissonance between the concept of recovery and participants lived experience was a prominent theme in the groups. Many stated that they preferred the word “managing”, “management” or “coping” rather than “recovery”. For example, “At this point, five years in from first being diagnosed, I think managing is probably the better word for me” (FGB p.3). For many, managing was identified as being part of an on-going process versus recovery, which they felt implied being “fixed” or “cured”. Some people felt it was important to make a distinction between “being recovered” versus “recovering” or “being in recovery”, which highlights the participants’ focus on “process”. (NOTE: this is true for family too)
- For many of the people who spoke about transformation or creating a new identity, they also emphasized the importance of adapting to the realities of living with BD, and a central theme associated with this was acceptance: acceptance of having BD; acceptance of self; and acceptance of change, limitations and losses. The theme of acceptance was one of the strongest to emerge in the groups of people living with BD. Two individuals (in different focus groups) explained that acceptance is a central component in the process of management. Letting go of stigma: This refers to the process that individuals go through to “let go of”, remove or no longer internalize stigma associated with their own mental illness. Many participants indicated that removing stigma (internal and external) was necessary to achieve recovery. For some, removing internalized stigma was recovery. People described internalized stigma as feelings of “shame” and “embarrassment”. As one participant described, this process of letting go of stigma can result in feeling good about having bipolar which allows for self-disclosures, reduced isolation and connection with others.
- The “disagreement with the concept of recovery” theme refers to participants’ dissatisfaction with the concept of recovery. The majority of participants living with BD stated that they did not like the term recovery and felt that it was inaccurate and/or unhelpful to them. This theme points to the significance of language and it’s meanings in understanding the lived experiences of health and well-being for people living with BD. A number of people mentioned that “language makes a difference” and that “language can support the actual process [of recovery]” (FGC p.22). Language is powerful and the dissonance between the concept of recovery and participants lived experience was a prominent theme in the groups. Many stated that they preferred the word “managing”, “management” or “coping” rather than “recovery”. For example, “At this point, five years in from first being diagnosed, I think managing is probably the better word for me” (FGB p.3). For many, managing was identified as being part of an on-going process versus recovery, which they felt implied being “fixed” or “cured”. Some people felt it was important to make a distinction between “being recovered” versus “recovering” or “being in recovery”, which highlights the participants’ focus on “process”. (NOTE: this is true for family too)
- The “disagreement with the concept of recovery” theme refers to participants’ dissatisfaction with the concept of recovery. The majority of participants living with BD stated that they did not like the term recovery and felt that it was inaccurate and/or unhelpful to them. This theme points to the significance of language and it’s meanings in understanding the lived experiences of health and well-being for people living with BD. A number of people mentioned that “language makes a difference” and that “language can support the actual process [of recovery]” (FGC p.22). Language is powerful and the dissonance between the concept of recovery and participants lived experience was a prominent theme in the groups. Many stated that they preferred the word “managing”, “management” or “coping” rather than “recovery”. For example, “At this point, five years in from first being diagnosed, I think managing is probably the better word for me” (FGB p.3). For many, managing was identified as being part of an on-going process versus recovery, which they felt implied being “fixed” or “cured”. Some people felt it was important to make a distinction between “being recovered” versus “recovering” or “being in recovery”, which highlights the participants’ focus on “process”. (NOTE: this is true for family too)
- The “disagreement with the concept of recovery” theme refers to participants’ dissatisfaction with the concept of recovery. The majority of participants living with BD stated that they did not like the term recovery and felt that it was inaccurate and/or unhelpful to them. This theme points to the significance of language and it’s meanings in understanding the lived experiences of health and well-being for people living with BD. A number of people mentioned that “language makes a difference” and that “language can support the actual process [of recovery]” (FGC p.22). Language is powerful and the dissonance between the concept of recovery and participants lived experience was a prominent theme in the groups. Many stated that they preferred the word “managing”, “management” or “coping” rather than “recovery”. For example, “At this point, five years in from first being diagnosed, I think managing is probably the better word for me” (FGB p.3). For many, managing was identified as being part of an on-going process versus recovery, which they felt implied being “fixed” or “cured”. Some people felt it was important to make a distinction between “being recovered” versus “recovering” or “being in recovery”, which highlights the participants’ focus on “process”. (NOTE: this is true for family too)
- The “disagreement with the concept of recovery” theme refers to participants’ dissatisfaction with the concept of recovery. The majority of participants living with BD stated that they did not like the term recovery and felt that it was inaccurate and/or unhelpful to them. This theme points to the significance of language and it’s meanings in understanding the lived experiences of health and well-being for people living with BD. A number of people mentioned that “language makes a difference” and that “language can support the actual process [of recovery]” (FGC p.22). Language is powerful and the dissonance between the concept of recovery and participants lived experience was a prominent theme in the groups. Many stated that they preferred the word “managing”, “management” or “coping” rather than “recovery”. For example, “At this point, five years in from first being diagnosed, I think managing is probably the better word for me” (FGB p.3). For many, managing was identified as being part of an on-going process versus recovery, which they felt implied being “fixed” or “cured”. Some people felt it was important to make a distinction between “being recovered” versus “recovering” or “being in recovery”, which highlights the participants’ focus on “process”. (NOTE: this is true for family too)
- The “disagreement with the concept of recovery” theme refers to participants’ dissatisfaction with the concept of recovery. The majority of participants living with BD stated that they did not like the term recovery and felt that it was inaccurate and/or unhelpful to them. This theme points to the significance of language and it’s meanings in understanding the lived experiences of health and well-being for people living with BD. A number of people mentioned that “language makes a difference” and that “language can support the actual process [of recovery]” (FGC p.22). Language is powerful and the dissonance between the concept of recovery and participants lived experience was a prominent theme in the groups. Many stated that they preferred the word “managing”, “management” or “coping” rather than “recovery”. For example, “At this point, five years in from first being diagnosed, I think managing is probably the better word for me” (FGB p.3). For many, managing was identified as being part of an on-going process versus recovery, which they felt implied being “fixed” or “cured”. Some people felt it was important to make a distinction between “being recovered” versus “recovering” or “being in recovery”, which highlights the participants’ focus on “process”. (NOTE: this is true for family too)
- The “disagreement with the concept of recovery” theme refers to participants’ dissatisfaction with the concept of recovery. The majority of participants living with BD stated that they did not like the term recovery and felt that it was inaccurate and/or unhelpful to them. This theme points to the significance of language and it’s meanings in understanding the lived experiences of health and well-being for people living with BD. A number of people mentioned that “language makes a difference” and that “language can support the actual process [of recovery]” (FGC p.22). Language is powerful and the dissonance between the concept of recovery and participants lived experience was a prominent theme in the groups. Many stated that they preferred the word “managing”, “management” or “coping” rather than “recovery”. For example, “At this point, five years in from first being diagnosed, I think managing is probably the better word for me” (FGB p.3). For many, managing was identified as being part of an on-going process versus recovery, which they felt implied being “fixed” or “cured”. Some people felt it was important to make a distinction between “being recovered” versus “recovering” or “being in recovery”, which highlights the participants’ focus on “process”. (NOTE: this is true for family too)
- The “disagreement with the concept of recovery” theme refers to participants’ dissatisfaction with the concept of recovery. The majority of participants living with BD stated that they did not like the term recovery and felt that it was inaccurate and/or unhelpful to them. This theme points to the significance of language and it’s meanings in understanding the lived experiences of health and well-being for people living with BD. A number of people mentioned that “language makes a difference” and that “language can support the actual process [of recovery]” (FGC p.22). Language is powerful and the dissonance between the concept of recovery and participants lived experience was a prominent theme in the groups. Many stated that they preferred the word “managing”, “management” or “coping” rather than “recovery”. For example, “At this point, five years in from first being diagnosed, I think managing is probably the better word for me” (FGB p.3). For many, managing was identified as being part of an on-going process versus recovery, which they felt implied being “fixed” or “cured”. Some people felt it was important to make a distinction between “being recovered” versus “recovering” or “being in recovery”, which highlights the participants’ focus on “process”. (NOTE: this is true for family too)