Psychiatric Annals

CME Article 

Implications for Psychiatric Care of the Word ‘Recovery’ in People with Bipolar Disorder

Erin E. Michalak, PhD; Rachelle Hole, PhD; Cindy Holmes, PhD Candidate; Vytas Velyvis, PhD Candidate; Jehannine Austin, PhD; Barbara Pesut, PhD; Sharon Hou, BA

Abstract

CME Educational Objectives

  1. Understand what “recovery” means to people with bipolar disorder (BD).

  2. Describe the difference between the traditional medical definition of “recovery” and the definition of recovery identified by people with BD.

  3. Discuss the importance of quality of life in relation to the concept of recovery as it relates to BD.

Bipolar disorder is a challenging psychiatric condition characterized by complex and varying symptoms, courses and outcomes. This complexity is compounded by differing understandings of recovery, from no hope of recovery to clinical recovery characterized by a linear diminishing of symptoms to personal recovery characterized by meaningful quality of life. These understandings have profound implications for individuals living with bipolar disorder, and yet, we know little about the meaning of recovery from their perspective.

The purpose of this study was to use qualitative research methods to determine what the term “recovery” means in a sample of Canadian individuals living with bipolar disorder (BD). Three focus groups, including 13 individuals who self-reported as being diagnosed with bipolar disorder type I or II, were conducted to better understand the meaning of recovery. Focus groups were digitally recorded and transcribed. Transcripts were coded manually and analyzed thematically resulting in four dominant themes.

Participants suggested “rethinking the language of recovery” was important because of the implied expectation that they would be cured, which was not a reasonable option from their perspective. Instead, they recommended “shifting the framework” toward wellness, quality of life, and managing BD. The “art of managing BD” consisted of a range of sophisticated self-management strategies such as getting exercise, taking medications, and accepting support from family and friends. Learning about one’s self, illness and emotions was critical to this management. This learning was characterized by “understanding the journey,” which entailed gaining a sense of self, accepting loss, and letting go of stigma. Recovering the identity that characterized the self prior to the onset of BD was in many cases not seen as realistic. Rather, participants were in the process of transforming and rebuilding a new identity. This necessitated dealing with the many losses associated with BD, and making critical decisions about which limitations would be accepted and which would be rejected. Letting go of stigma resulted in allowing self-disclosure, which in turn reduced isolation. Education played a key role in reducing internalized stigma.

Four important practice implications arose from this study. Firstly, it is important to find a language of recovery that reflects the complexities of living with a chronic mental health condition. Secondly, quality of life should be given priority in the treatment process. Short, well-validated scales are available to facilitate this exploration. Thirdly, emphasis should be placed upon the capacity of people living with BD to self-manage their condition. A variety of techniques and tools are available to assist clinicians. Lastly, a collaborative therapeutic relationship is fundamental to enabling individuals to rebuild a sense of self and lower the stigma associated with living with BD.

Insights such as these into the meanings of recovery are essential to high quality care. Individuals in this study provided complex and nuanced understandings of recovery that were meaningful in relation to their lives. However, it is important to note that this was a small sample, all self-referred and not ethnically diverse. Research is required to further our understandings of recovery in more diverse populations.

Abstract

CME Educational Objectives

  1. Understand what “recovery” means to people with bipolar disorder (BD).

  2. Describe the difference between the traditional medical definition of “recovery” and the definition of recovery identified by people with BD.

  3. Discuss the importance of quality of life in relation to the concept of recovery as it relates to BD.

Bipolar disorder is a challenging psychiatric condition characterized by complex and varying symptoms, courses and outcomes. This complexity is compounded by differing understandings of recovery, from no hope of recovery to clinical recovery characterized by a linear diminishing of symptoms to personal recovery characterized by meaningful quality of life. These understandings have profound implications for individuals living with bipolar disorder, and yet, we know little about the meaning of recovery from their perspective.

The purpose of this study was to use qualitative research methods to determine what the term “recovery” means in a sample of Canadian individuals living with bipolar disorder (BD). Three focus groups, including 13 individuals who self-reported as being diagnosed with bipolar disorder type I or II, were conducted to better understand the meaning of recovery. Focus groups were digitally recorded and transcribed. Transcripts were coded manually and analyzed thematically resulting in four dominant themes.

Participants suggested “rethinking the language of recovery” was important because of the implied expectation that they would be cured, which was not a reasonable option from their perspective. Instead, they recommended “shifting the framework” toward wellness, quality of life, and managing BD. The “art of managing BD” consisted of a range of sophisticated self-management strategies such as getting exercise, taking medications, and accepting support from family and friends. Learning about one’s self, illness and emotions was critical to this management. This learning was characterized by “understanding the journey,” which entailed gaining a sense of self, accepting loss, and letting go of stigma. Recovering the identity that characterized the self prior to the onset of BD was in many cases not seen as realistic. Rather, participants were in the process of transforming and rebuilding a new identity. This necessitated dealing with the many losses associated with BD, and making critical decisions about which limitations would be accepted and which would be rejected. Letting go of stigma resulted in allowing self-disclosure, which in turn reduced isolation. Education played a key role in reducing internalized stigma.

Four important practice implications arose from this study. Firstly, it is important to find a language of recovery that reflects the complexities of living with a chronic mental health condition. Secondly, quality of life should be given priority in the treatment process. Short, well-validated scales are available to facilitate this exploration. Thirdly, emphasis should be placed upon the capacity of people living with BD to self-manage their condition. A variety of techniques and tools are available to assist clinicians. Lastly, a collaborative therapeutic relationship is fundamental to enabling individuals to rebuild a sense of self and lower the stigma associated with living with BD.

Insights such as these into the meanings of recovery are essential to high quality care. Individuals in this study provided complex and nuanced understandings of recovery that were meaningful in relation to their lives. However, it is important to note that this was a small sample, all self-referred and not ethnically diverse. Research is required to further our understandings of recovery in more diverse populations.

Introduction

Bipolar disorder (BD) holds the dubious distinction of being one of the most complex conditions faced in psychiatric practice. The signs and symptoms of BD are complex: a person with the condition can experience symptoms of depression; mania; hypomania; or psychosis; combinations of these mood states; or rapid cycling between them. The course of BD is complex: there can be marked variability between people with BD in relation to the type, number, length and severity of mood episodes faced over a lifetime.

Outcomes in BD are complex: some affected individuals experience terrible disability and impoverished functioning, and suicide rates in this population are amongst the highest of all psychiatric conditions.1 Yet, others with BD can experience good quality of life,2 or indeed exhibit marked strengths and talents.3 However, the current prevailing view in both research and clinical settings is that BD is a severe mental illness from which there can be little hope of recovery. The implications of this message for people newly diagnosed with BD can be profound,4 and may impact key predictors of treatment response, such as adherence with pharmacological or psychosocial interventions, treatment alliance, or indeed, determine whether the individual engages with psychiatric care at all.

One of the challenges clinicians face when talking about recovery in this context occurs in our lack of precision about what the term “recovery” represents and entails, and a historical confounding of two distinct concepts. On the one hand, we have “clinical recovery” in BD. Applied most commonly in BD research and psychiatric care, clinical recovery typically refers to a linear progression, measured by concrete clinical outcome parameters such as rates of relapse into depressive or manic episodes, or reduction of symptoms.

On the other hand, we have “personal recovery” in BD. Applied most frequently in the psychosocial rehabilitation, and consumer-movement literature,5,6 personal recovery refers to a nonlinear process that is focused less on pathology and dysfunction. Personal recovery does not by necessity require the full abatement of symptoms or complete restoration of functioning; rather, it refers to living a meaningful life beyond the restrictions of the illness.7 Personal recovery is understood as a dynamic process with no specific endpoint, idiosyncratic in its features and timing across individuals.

Although this consumer-derived understanding of recovery has gained significant momentum internationally, its implications for and applicability to BD have not been fully explored. The objective of this study was to explore what the term “recovery” means in a sample of individuals living with BD via qualitative research methods.

Methods

Acknowledging the complexities of researching BD and the limited multidisciplinary research in this area, we established the Collaborative RESearch Team to study psychosocial issues in Bipolar Disorder (CREST.BD)8 in 2007 (see Sidebar). Each year, CREST.BD holds a “Community Engagement Day,” the topic of which is selected on the basis of community priorities. The topic of the network’s 2010 consultation day was “Through My Eyes: The Concept of Recovery in People with BD.” Advertising for the event was widespread and used a variety of strategies designed to engage participants from diverse backgrounds (eg, CREST.BD newsletters, networking, use of websites and social media).

Sidebar

The Collaborative RESearch Team to study psychosocial issues in Bipolar Disorder (CREST.BD, www.crestbd.ca) is a collaborative network of researchers, health care providers and community members dedicated to researching and exchanging knowledge about psychological and social factors in BD. The network includes representatives from a variety of health disciplines, including psychology, psychiatry, occupational therapy, nursing, genetic counseling, and mental health advocacy. A guiding principle of CREST.BD is to foster and promote “Community-Based Participatory Research” (CBPR), whereby individuals with BD, their family members and health care providers are active participants in research and knowledge exchange. CBPR aims to engage community members, build research capacity, influence social change and place the knowledge and expertise of community members at the core.

A qualitative research project using focus group methods was embedded into the engagement day; focus groups were selected to encourage dialogue among participants and offer safety to those who may have found individual interviews more intimidating.9 The groups (conducted separately for people with BD and family members) occurred prior to the main events of the day and were facilitated by two CREST.BD members; lead facilitators were all PhD team members with expertise in qualitative research methods.

The focus groups lasted approximately 90 minutes and, were digitally recorded and transcribed verbatim. Open-ended focus group questions included the following: “What does recovery mean to you as a person living with BD?”, “What strategies have helped your recovery?”, “What strategies have hindered your recovery?”, and “Have you experienced recovery?” Ethics approval for the research was granted by the UBC Behavioural Research Ethics Board and participants provided written, informed consent.

Background of Participants

To meet inclusion criteria, participants were required to have a self-reported diagnosis of BD type I or II or be the family member of a person with BD, be aged between 19 and 65 years, and fluent in English. Research participants (the majority of whom were not known to each other) included: a) 13 individuals who self-reported as being diagnosed with BD type I or II; and b) six family members of people with BD. Here, we focus only on findings arising from the focus groups conducted with people diagnosed with BD. The sample included three men, 10 women; median age was 41 years. All participants had a minimum educational attainment of a high school diploma, with five participants attaining postsecondary degrees, or additional education.

Data Management and Analysis

The data were analyzed using thematic analysis.10 The transcripts were coded manually by a graduate research assistant (PhD candidate) with advanced training in qualitative methods. This involved an inductive process of topic coding.11 Initially, one transcript was carefully read and re-read to identify commonalities, differences, pattern, and structure.12 This re-organization facilitated reducing the data into manageable organized segments leading to the development of an initial coding framework.10

The team held regular analytic meetings to monitor coding consistency; code definitions and emerging themes were discussed to ensure that the findings were internally consistent and supported by the data, thus addressing the analytic validity of identified themes. Once the coding framework was established, the subsequent transcripts were analyzed and the initial transcript reanalyzed. Any concerns with the coding framework (eg, uncertainty around the definition and/or attributes of a code, or the identification of a new code) were brought back to the team for discussion, leading to ongoing refinement of the coding framework and subsequent themes. The findings presented in this paper are supported by direct quotes from participants as to enable readers to evaluate the interpretations. All identifying information was removed or changed to ensure participants’ confidentiality.

Results and Practice Implications

Meaning of Recovery

Several themes were identified during the analysis. For the purpose of this report, we focus on the responses that relate to our over-arching question of what recovery means to people with BD. “The Meaning of Recovery” was a rich category with numerous supporting themes and nuanced dimensions. Within this category were four themes, specifically: “Re-thinking the Language of Recovery”; “Shifting the Framework”; “The Art of Managing BD”; and “Understanding the Journey.”

Many participants expressed dissatisfaction with the term “recovery,” which led to the theme “Re-thinking the Language of Recovery.” The majority felt it was inaccurate or unhelpful to them, stressing the importance of using language that instead reflects the complex experiences of people with BD. Some associated the word recovery with the concept of “cure.” For example, one patient commented: “See, I don’t like the word recovery because to me it sounds like one event, one colossal, miraculous event [other participants present agreed, saying “yes”] and it’s like you broke your leg and now it’s fixed.” Other patients agreed with this observation. In fact, many felt that “recovery” was problematic because it implied a permanent cure to BD rather than a process and could set up unrealistic expectations, as the following quote illustrates: “I wouldn’t use the word recovery. I think it creates weird expectations and I would just say that coping is the key, not expecting ‘a’ recovery. It’s a lifetime process. It’s going to happen every day for the rest of your life. Get used to it.”

Practice Implications

The inherent variability in BD likely accounts in part for our research participants’ unease with the term “recovery” as adopted by the psychosocial rehabilitation literature. This finding suggests that a “one-size-fits-all” approach may not be linguistically appropriate for describing outcomes in people with mental illness. Indeed, the literature supports the importance of working toward setting personally relevant and meaningful goals that reflect an individual’s hopes and dreams and optimize quality of life for people with serious mental illness.13 Similarly, finding a language that accurately reflects the complexities of living with a chronic mental health condition characterized by idiosyncratic shifting mood states, functioning, and well-being is also important.

Shifting the Framework

Given participants’ discomfort with the term “recovery,” it is not surprising that a second theme identified was “Shifting the Framework.” Most participants stressed the importance of shifting the framework from one of illness to wellness; an emphasis on quality of life, including happiness and engagement with life. And, as one individual stated, “[this] is a shift in the framework.”

Thus, instead of “recovery,” many preferred the words “managing” or “coping.” For example, one participant shared, “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.”

Managing was described as part of an on-going process: taking things “one day at a time.” It is significant that in all of the focus groups, participants not only described management as a strategy that helped achieve recovery but also as part of the meaning of recovery — a state of recovery or wellness in and of itself.

Practice Implications

Participants in the sample prioritized targeting improved quality of life as a treatment goal as opposed to reducing pathology (eg, reducing BD symptoms or number or number of relapses). Other research has indicated that individuals with BD attend to more than symptom-reduction when evaluating treatment outcomes. For example, 23% of our sample were comprised of depressed individuals with BD (n=90) who described their goal for medications as being to help balance mood and reduce symptoms. Twenty percent of the sample also, however, described their desire to return to “normal.”14 The assessment of both symptoms (in particular depression) and functioning and/or quality-of-life outcomes is recommended for individuals with BD.15 A range of brief (<5 minute administration time), well-validated assessment scales are available for assessing quality of life, including a scale tailor-made for BD populations.16

The Art of Managing BD

“The Art of Managing BD” was a third theme identified, and referred to a range of strategies, including: self-management strategies (such as getting exercise, taking medications); accepting support from family and friends; tracking or managing symptoms and/or medications; and learning about tools to manage symptoms. Most people mentioned the importance of finding the right medications; adhering with medication regimens; and managing their side effects as part of the management of BD. However, several participants emphasized that management is not only about medications or seeing a psychiatrist, but also having wellness and support from family and friends.

One patient said: “I’m on really good medications and they work for me, you know. But that’s only a small piece of the puzzle and I think ... recovery has to start looking at not just a patient going to a psychiatrist. That’s not recovery, you know? That doesn’t ... isn’t ... probably going to bring about recovery unless you have strong family support or a loving spouse.”

For those who still held to a framework of recovery there was a distinction made between managing and recovery. For example, managing was the reduction of mood swings, an absence of symptoms, and/or greater stability in their lives. But some had difficulty imagining more than managing or coping on a day-to-day basis. Recovery, however, was more than the absence of symptoms and “more than management [of living with BD].” Recovery involved a deeper sense of well-being and quality of life. As one individual stated, “I’ve been symptom-free, but I’m not recovered.”

Finally, “learning” was another fundamental dimension to “The Art of Managing BD.” Learning about one’s self, one’s illness, and emotions contributing to management and self-monitoring strategies. Learning was connected to acceptance and “taking responsibility for yourself,” “empowering one’s self,” and “growing.” And, for some, successes in managing BD would be reaching a point where the illness did not define one’s identity.

Practice Implications

The “art” of managing BD theme illustrates that individuals with BD recognize that “managing” the illness involves finessing a complex set of skills. Participants’ understanding of management challenges the dominant assumption that this is somehow “less than” recovery (ie the idea that someone is only managing), and instead acknowledges “management” as a distinct art form in and of itself. Several research studies have now shown that people with BD, even the more severe manifestations,2 can adopt self-care strategies to manage their conditions more effectively.

Participants in a study of high-functioning individuals with BD2 described the following self-management strategies as key: sleep, rest, exercise and diet; ongoing monitoring; enacting a plan when at risk of relapse; reflective and meditative practices; understanding BD and educating others; and connecting with others. There are a variety of techniques or tools available to the practicing psychiatrist to assist in efforts to support individuals with BD in maintaining or regaining wellness.17

Understanding the Journey

A fourth theme pertaining to the meaning of recovery was “Understanding the Journey.” This includes the following three sub-themes which describe aspects of the process or journey towards wellness and improved quality of life: “Sense of Self”; “The Role of Loss and Acceptance”; and “Letting Go of Stigma.”

In discussions about the meaning of recovery, participants spoke about the way BD had impacted their lives and their “Sense of Self.” Some participants described recovery as “returning to their former self” or “getting back to what I was like before”; however, there was dissonance about ideas of “getting back to normal.” Many disagreed with the idea of returning to one’s former life and felt that recovering meant a process of “transformation” or “rebuilding” a new identity and/or life. This theme reaffirmed the notion that recovery is an ongoing process.

One participant shared: “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.”

Individuals spoke about “The Role of Loss and Acceptance” on the journey. Participants identified many losses associated with BD, such as not being able to work, live independently, and/or fulfill one’s dreams of career or family, friendships and social networks. Such losses, and the related grief, can make it difficult to experience hope and move on to embrace new ways of living. Thus, acceptance and adapting to the realities of living with BD was a central theme in the journey of recovery for many participants. These included acceptance of having BD, of self, and of changes, limitations and loss. At the same time there was discussion among participants about the way accepting limitations can both help and hinder recovery. For some, hoping for change and not accepting too many limitations was an important part of recovery or wellness.

Another important aspect of the journey involved “Letting Go of Stigma.” The focus groups confirmed that BD-related stigma remains pervasive. Participants gave numerous examples of external and internalized stigma, and identified it as something that significantly hindered recovery and wellness. People described internalized stigma as feelings of “shame” and “embarrassment” and many indicated that “letting go of stigma” (ie, removing internalized stigma) was necessary for recovery. Some indicated this could result in feeling OK about having BD, which allows for self-disclosures, reduced isolation, and connection with others. Educating oneself and receiving support from family, teachers, employers, colleagues, support groups and therapists were important strategies that individuals with BD employed to reduce internalized stigma.

Practice Implications

The three themes nested within “Understanding the Journey” all find support in the wider BD literature. For example, several research studies have pointed to the potential impact of BD upon sense of self or identity.18 Other research has illustrated that acceptance of BD can be an important gateway to wellness and appropriate treatment.19

There is a growing body of evidence demonstrating the importance of addressing stigma in relation to BD, in particular self-stigma.20,21 While the majority of evidence-based psychosocial treatment interventions for BD (eg, cognitive-behavior therapy, family/individual/group psycho-education, interpersonal rhythm therapy) address stigma,22 this also represents a significant point of clinical leverage for the psychiatrist to impact the course of BD by addressing stigma in routine clinical care.

The power of the therapeutic relationship can be maximized by adopting a strongly collaborative stance,23 which in itself has been associated with reduced risk of relapse in BD.24 Key elements of a collaborative therapeutic relationship are: (1) the clinician is warm, directive and concerned, a problem-solver applying a coping model; (2) the patient is active in determining the specific targets of therapy, while the clinician is expert in proposing pathways to achieve these goals; (3) the patient and clinician work as a collaborative team; (4) the therapeutic emphasis is on measurable changes outside the therapy room; and (5) the therapeutic goals are supported by learning principles (e.g., change as incremental). In practice, a collaborative therapeutic atmosphere can be generated by asking clients to give their opinions about treatment, and what they think might be effective on the basis of past experience.

Conclusion

This study represents a blend of CBPR and qualitative research methods, and as such holds the potential for deeper insights into understandings of recovery in people with BD. However, our sample was not ethnically diverse – understandings of recovery are likely impacted by culture and ethnicity. The make-up of the sample, the small sample size, the fact that participants were self-referred, and the qualitative nature of the study, limits the generalizability of the findings. Finally, diagnosis of BD was not confirmed via structured interview in this study, although many of the participants involved had been engaged in CREST.BD’s research previously and had received a confirmed diagnosis of BD elsewhere.

References

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Sidebar

The Collaborative RESearch Team to study psychosocial issues in Bipolar Disorder (CREST.BD, www.crestbd.ca) is a collaborative network of researchers, health care providers and community members dedicated to researching and exchanging knowledge about psychological and social factors in BD. The network includes representatives from a variety of health disciplines, including psychology, psychiatry, occupational therapy, nursing, genetic counseling, and mental health advocacy. A guiding principle of CREST.BD is to foster and promote “Community-Based Participatory Research” (CBPR), whereby individuals with BD, their family members and health care providers are active participants in research and knowledge exchange. CBPR aims to engage community members, build research capacity, influence social change and place the knowledge and expertise of community members at the core.

Authors

Erin E. Michalak, PhD, is Associate Professor, Department of Psychiatry, University of British Columbia, Canada. Rachelle Hole, PhD, is Assistant Professor, School of Social Work, University of British Columbia, Canada. Cindy Holmes, is a PhD Candidate in Interdisciplinary Studies, University of British Columbia, Canada. Vytas Velyvis, is a PhD Candidate, York University, and Director of Research, Ontario Shores Centre for Mental Health Sciences, Canada; Jehannine Austin, PhD, is Assistant Professor, Department of Psychiatry, University of British Columbia. Barbara Pesut, PhD, is Assistant Professor, School of Nursing, University of British Columbia, Canada. Sharon Hou, BA, is Research Coordinator, University of British Columbia, Canada and CREST.BD.

The authors have disclosed no relevant financial relationships.

Address correspondence to: Erin E. Michalak, PhD, Department of Psychiatry, University of British Columbia, 2255 Wesbrook Mall, Vancouver, BC, Canada V6T 2A1; email: .erin.michalak@ubc.ca

10.3928/00485713-20120507-04

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