A Meta-Study of Qualitative Research Into the Experience of ‘Symptoms’ and ‘Having a Diagnosis’ for People Who Have Been Given a Diagnosis of Bipolar Disorder

Bipolar Disorder as a Psychiatric Diagnosis

Bipolar disorder is a commonly applied diagnosis of a mental health problem with prevalence rates between 1-1.5% (Jones, 2004). According to the American Psychiatric Association (1994), the criteria for a diagnosis of bipolar disorder require the presence of either ‘mania’ or ‘hypomania’ alongside an experience of ‘clinical depression’. Unlike many other diagnoses, bipolar disorder appears to have no significant differences in prevalence rates across cultures, age groups or gender compared to culture, age and gender in the general population (Newman, Leahy, Beck, Reilly-Harrington, & Gyulai, 2001).

People who have been labelled with this diagnosis report significant distress and suffering, poor quality of life, high levels of self-harm and approximately a third of these people attempt suicide at some point (Jones, 2004; Jones & Bentall, 2006). The diagnosis is also associated with non-adherence to psychological interventions and medication and this is seen as negatively impacting the prognosis (Gaudiano, Weinstock, & Miller, 2008). However, it should be noted that this epidemiological data is largely based on information gathered within westernised and developed countries such as the United Kingdom and United States of America.

Many people who are given the bipolar disorder diagnosis prefer the original term, coined by Emil Kraepelin, of ‘manic-depression’ as this seems to reflect more closely the extremes of emotional experience they tend to report (Critical Psychiatry Network, 2009; Jamison, 1995). The term bipolar disorder was introduced by Karl Leonard in 1957 as a solution to the over-inclusiveness of ‘manic-depression’ due to the huge differences in the ‘symptoms’ reported by people given this diagnosis (Bentall, 2003). This separated manic-depression into unipolar depression and bipolar depression. Ironically, contemporary commentators observed that the construct of bipolar disorder has itself become an over-inclusive diagnosis in current diagnostic systems (Critical Psychiatry Network, 2009).

Critique of Psychiatric Diagnosis

In drawing from studies where diagnosis is part of the criteria for participant selection, it is important to acknowledge from the outset some of the problems of psychiatric diagnosis. Two of these problems are discussed below; lack of validity of diagnoses and ethical problems with diagnoses and its role in social power structures.

The psychiatric diagnostic system fundamentally views emotional distress as arising from biological abnormalities that can be alleviated by biological interventions (Moncrieff, 2007). Diagnostic systems have been argued to be unjustified by research and unreliable in distinguishing aetiology, prognosis and outcome (Boyle, 2007). This is perhaps not surprising given the historical context of diagnostic models and the fact that these have not been sufficiently updated to reflect the evidence of their invalidity (Bentall, 2003). Furthermore, it is clear that, despite service-users sometimes adopting diagnostic terminology to describe their experiences, they “tend to attribute their breakdowns not to illness, but to a variety of psychological and social reasons”, taking a contradictory position to the disease model of diagnostic systems (Johnston, 2000, p. 35).

The diagnosis of bipolar disorder has received particular criticism. The Critical Psychiatry Network (2009) observes major discrepancies between the ‘Diagnostic and Statistical Manual of Mental Disorders’ and the ‘International Statistical Classification of Diseases and Related Health Problems’. This lack of agreement between diagnostic systems undermines the validity of the construct of bipolar disorder. There has also been a concerning rise in reported prevalence rates of bipolar disorder since the 1950s and again more rapidly in recent years; this is difficult to account for using the disease model (Healy, 2008). One commentator has suggested that this reflects the investment of pharmaceutical companies in medication for bipolar disorder, which again would threaten the validity of the diagnosis (Healy, 2008).

In addition to validity concerns about diagnosis, there have also been questions about the oppressive function of diagnosis in society. Thomas Szasz (1972, p. 275) described psychiatric diagnoses as “stigmatizing labels, phrased to resemble diagnosis, and applied to persons whose behaviour offends or annoys others”. This position has been further elaborated with some commentators perceiving a societal operation of power and interest in promoting a misinforming discourse of emotional distress as ‘illness’ that creates the illusion that the distress is the fault of the individual (Smail, 2005). Moreover, many service-users have described the burden and the stigma of diagnosis of mental illness as well as the subjugation of their views and opinions in professional discourses about diagnosis (Campbell, 2007).

Research Exploring This Diagnosis

Jones and Bentall (2006) argue that people who been given the diagnosis of bipolar disorder have until recently been neglected in psychological research. The recent upsurge in research has contributed to the development of theory and intervention. This has been based mainly on the integration of quantitative research that has explored personal factors related to risk, patterns of thinking, neuropsychological characteristics, biological characteristics, and treatment outcomes (Jones & Bentall, 2006).

There is also a body of qualitative research that has sought to explore more closely the experience of people who have been given this diagnosis. These studies offer alternative insights into ways of understanding the experiences associated with symptoms and receiving diagnosis. The current impact of this qualitative research is limited due to the absence of attempts to make connections and draw distinctions between the findings of these studies.

Meta-Data Analysis

This is the “analysis of the results of previous analysis” (Zhao, 1991, p. 378), performed in order to highlight the interrelationships between findings regarding phenomenon under study (Paterson, Thorne, Canam, & Jillings, 2001). In this manner, meta-data analysis is essentially an approach aimed at making sense of the findings of a series of related but independent investigations, in order to recognise shared and differing outcomes in a meaningful way. This meta-data analysis is guided by the meta-ethnographic approach of Noblit & Hare (1988), which is described below.

Primary research studies identified for the literature review are read several times. They are then re-read and notes are made of the phrases, metaphors, ideas and concepts described in the primary studies. The next stage is to organise the notes from each study to identify common themes, metaphors and concepts within each study. Finally, the notes for all studies are compared to establish whether the studies offer similar ideas and concepts (demonstrating that they are ‘reciprocal’) or have conflicting ideas and concepts. Based on this process, the studies we analysed were perceived as being reciprocal and the shared themes that emerged are presented in this review.

Meta-Method

The meta-method provides an overview of the ‘epistemological soundness’ of the primary research studies (based on guidelines from Yardley, 2000), and a consideration of how the application of methods may have shaped the findings emerging from this field of research (Paterson et al., 2001).

Meta-Theory

The meta-theory undertaken in this review considers the theories that have been used to understand the experience of people who have a diagnosis of bipolar disorder and the theories developed from that body of research.

Inclusion and Exclusion Criteria

After the initial literature search, more stringent inclusion and exclusion criteria were applied to select appropriate papers:

These criteria ensured that the studies relate to adults who have been given the diagnostic label of bipolar disorder. The choice of excluding studies without analysis of data was taken to provide a set of studies that also reveal something about the authors’ constructions of participants’ constructions. These strict criteria also provided a means for maintaining the number of studies below ten to enable this review to be comprehensive (Sandelowski, Docherty, & Emden, 1997). Overall, nine studies were identified for inclusion in this review (see Table 1 below). For simplicity, this review refers to these studies by the code number in the table.

Overall Participant Sample

All the studies included in this review used the official diagnosis of bipolar disorder as a way of selecting participants although the studies ranged widely in terms of the functional difficulties experienced by participants, the severity of their symptoms and the length of time since diagnosis. Overall, across all studies there were 135 participants. All studies, with the exception of one [5], stated the gender of participants and so overall data from these studies breaks down into the following percentages; 37.4% were men and 62.6% were women. The age of participants ranged from 15-68. Only four studies reported the average age of participants [1,2,6,7]. The mean of these average ages was 37.2.

The ethnicity and education of participants was not widely reported in these studies. Given that bipolar disorder seems to be diagnosed with equal prevalence rates across different ethnic groups (Newman et al., 2001), it could be assumed that participants may represent largely the cultural majority within the countries where the studies took place. Therefore, this sample is likely to mainly represent white participants who live in the five specific countries where the research has been carried out, all of which would be considered to be ‘developed’ countries. The level of education of the participants indicates a range of educational backgrounds from school leave-takers before the age of sixteen to university graduates.

Struggles With Identity

All the studies with the exception of one [3] highlighted the struggles with identity faced by the participants. These struggles were described as complex and took multiple forms. Two of the studies [1,2] reflected on a sense of confusion that comes from the discontinuity of moods experienced by people who are given the diagnosis of bipolar disorder; “I had different personalities all over the place that were out of character for the person who had been so happy a couple of months ago” (1, p. 129). In some of the studies, the participants referred to a strong sense of loss or absence of self [1,4,6,7,8]. One participant said “my biggest issue is coming to terms with the loss of who I am, and that I sometimes feel I cannot be the person I once was” (4, p. 125) and another noted that after a manic episode, “You don’t know how to become yourself again, it’s like someone hands you a drivers licence and you’re like, ‘well who is this person’?” (6, p. 32).

Participants and authors in several of the studies also recognised a sense of fragility and uncertainty about the self [1,4,7,8,9]. The authors of one study noted that “Participants were not knowing whether or not to trust themselves” (4, p. 125), and a participant in another study described feeling like “…just a pile of pieces. And I didn’t have enough glue to put it together again” (7, p. 155).

In contrast, four of the studies referred to ‘acceptance’ of identity as also being part of the experience of some people who have a diagnosis of bipolar disorder [1,2,6,8]. One author commented “As people sort through observations about self and symptoms, and as they consider what they value about themselves, they make decisions about what they will and will not claim as part of themselves” (8, p. 101).

Loss of Control

Seven of the studies reflected on the feeling of loss of control as a central part of experience for participants [1,3,4,5,7,8,9]. Some of these studies commented that participants accounts of the internal experience of mania were partly characterised by a sense of fast motion and high speed thinking which felt out of control and scary [3,4,7,8,9]. This experience was powerfully communicated in the metaphors used by some of the participants. One person explained, “The mania terrifies me, the thoughts run through my mind like a speed train and I hate it.” (4, p. 124). One study described the experience of “Very fast motion” as the only consistent characteristic of mania reported by participants (3, p. 45).

In several of the studies, a frightening loss of control was also described by participants through the use of analogy to powerful and dramatic external events [1,5,7,8]. In particular, participants seemed to draw on metaphors from the natural world in communicating a sense of powerlessness in the face of overwhelming forces such as being in the path of hailstorms, tornados, quick sand and the waves of the ocean.

Disruption, Uncertainty and Instability

All of the studies in this review reported to some extent the participants’ reflections of the experience of disruption in their lives and most studies highlighted a sense of pervasive uncertainty and instability that accompanied this in participants’ accounts [1,2,4,5,6,9]. One study commented that, “There appears to be a constant struggle for stability and normality in their lives, and these are often elusive in the face of recurrent episodes and hospitalisation” (5, p. 813). This struggle for stability was described by the authors of another study as attempting to find “order in chaos” (6, p. 28).

Two studies commented directly on the shared experience among participants of uncertainty in terms of the future [2,4]. This uncertainty was seen as spanning all spheres of the person’s life. A number of participants explained that as a result of this uncertainty, they avoid making plans and goals for the future, one example was “I only think about one day at a time…tomorrow I plan to go to my boyfriend…but then I haven’t planned anything, it’s like a blank piece of paper” (2, p. 1229).

This uncertainty about the future was further allied to feelings of hopelessness in three of the studies [2,4,5]. One study hypothesised about the cognitive processes that lead to hopelessness, “If their future were predicted by their past and current circumstances, then it follows that they would perceive their future to be as uncertain or unstable as their lives at present. This often results in a sense of hopelessness…” (5, p. 815).

Negative Impact of Symptoms Across Life and the Experience of Loss

Participants across all studies talked about the wide negative impact of symptoms on their social world and other domains of life. Two studies in particular highlighted this as a central part of the experience of their participants [1,6]. One of these described that, “Participant’s responses revealed that the onset of bipolar disorder…brings about changes that, for many patients, may last a lifetime. These changes include the break-up of relationships, loss of employment and financial status, and alienation from friends” (6, p. 814). This interpretation by the authors also reveals their alignment to the medical model in assuming that ‘bipolar disorder’ is an illness that happens to a person and then causes life changes as opposed to there being an interaction between a person’s distress and difficult life events. Furthermore, it is not clear in the authors’ analysis whether this view is shared by the participants in the study.

All the studies revealed participant stories of deficits and losses with the theme of loss being made explicitly clear in four of the studies [5,7,8,9]. One participant explained “Our illness does cover loss. Loss, I mean, we have loss, living with loss, to do with relationships, jobs, and family, and also with time” (5, p. 814). In one study, the author observed that many participants had experienced feelings of loss as they, “began to realise that they have suffered significant losses in their own lives that, in retrospect, they can attribute to symptoms of their bipolar disorder” (8, p. 99).

In addition to experiencing loss about their current lives, two of the studies reflected on feelings of loss about the future [8,9]. These discourses contained a sense of grief and mourning for previously imagined futures now seen as unobtainable. One study summarised this loss as “not being able to fulfil their life dreams” [9, p. 175] and another extended this by observing that some of the participants realised “that, given their ongoing symptoms, their expectations and hopes for themselves are too high and need to be lowered to be more realistic” [8, p. 99).

Negative View of Self

A common thread across five of the studies was a negative view of self [1,4,5,8,9]. Some participants expressed this directly through statements such as, “It can make you feel very, very bad about yourself,…you can just feel like the lowest form of life on the planet” [8, p. 70]. Other’s expressed a sense of self-disgust though their use of metaphor; “In the beginning I hid it like, like leprosy.” (7, p. 202). For some of the participants it seemed that this sense of ‘self-dislike’ [1, p. 130] or “self-loathing” [1, p. 130] may have related to feeling like a failure, which was alluded to in two studies [1,5] with one observing that, “Bipolar patients also view themselves as being defective. Often, there is an accompanying sense of failure and loss of self-confidence” (5, p. 814).

It is interesting that this sense of failure was expressed only in two of the studies, which used non-interview based methods of data-collection, namely excerpts from therapy and a focus group. These methods may create a context where talking about a sense of self-failure may be more socially accepted or even socially expected than in interviews. This highlights the problem of comparing studies where different methods of data-collection are used, which place the participants in different social contexts and roles, such as interviewee, group member or service-user.

Positive or Desirable Aspects of ‘Mania’

Four studies also described participants’ accounts of positive elements of the experience of ‘mania’ [2,3,4,7]. For some, these positive elements of experience were seen by participants as offering relief from depression [2], whereas three of the studies [2,4,7] described how some participants found ‘mania’ a desirable part of experience in its own right; “Several of the participants commented on how they enjoyed their manic symptoms” (4, p. 124). One study developed this idea by eliciting a range of descriptions about the experience of ‘mania’ that indicated parts of this experience were positive, such as “… (feeling) very happy, feeling expansive, having high energy” [7, p. 113].

Participants in two of the studies expressed particular difficulty in taking on the assumption of the psychiatric construct of bipolar disorder, that would entail accepting that positive elements of their experience as part of ‘an illness’ [4,7]. One study commented, “They understood that while they were depressed they were unwell, but they found it harder to comprehend that when they were ‘happy’ they were also unwell” (4, p. 125). One study described the risk of ‘pathologising exuberance’ illustrated by one participant who said of getting diagnosed that, “Here’s someone telling me that the times in my life where I had felt any joy, any ecstasy, any sense of purpose or meaning-you know…that any of those things that I felt or thought were also pathology” (7, p. 180).

Struggling With the Meaning of Diagnosis

Participants in four of the studies described the significant impact of diagnosis and their subsequent responses and ways of finding meaning from this [2,4,7,9]. Some of the participants talked about difficulty initially accepting the assumption of the psychiatric model of the construct of bipolar disorder as ‘an illness’; “Accepting my illness was very difficult for me…due to the fact that there were so many years between (relapses)” (2, p. 1223). One study indicated that part of the difficulty with accepting the diagnosis at first was the meaning of bipolar disorder to participants, “The initial association of some participants to bipolar disorder was that bipolar disorder was a ‘crazy’ diagnosis, unlike depression, and that this meant they were crazy” (7, p. 134).

The narrative offered within these studies seems to suggest that after the initial shock of diagnosis the participants went through a process of meaning-making that eventually led to the diagnosis becoming a more congruent part of their identity. This could be seen as a process of recognition that the construct of bipolar disorder closely resembled their experiences and matched their belief system, or alternatively the assimilation of diagnosis into their identity could be seen as enforced submission to assumptions of the psychiatric model due to the dominant influence of these discourses in society.

Stigma

One of the strongest areas or reciprocity between the studies was participants’ experience of feeling stigmatised [1,2,4,5,6,7,8]. Some of the participants’ accounts seemed to indicate two parts to their experience of stigma; being seen as ‘not normal’ [5,7] and being seen as ‘crazy’ or feared by other people [5,6,7,8].

The sense of ‘being seen as not normal’ was illustrated in participants metaphors in one study, with one man describing feeling like a ‘Martian’, and another participant describing themselves as feeling like ‘the kid with the cooties’ [7]. The studies suggest that being seen as mentally ill and therefore not normal led to isolation from their communities. This discourse is summarised in one study, “They described being isolated from the community around them and their families, and view the community around them as rejecting them” (5, p. 814).

These studies also revealed narratives about the fears of being seen as crazy, with ‘mania’ being perceived as a particularly ‘crazy’ form of mental illness. This was captured by a participant in one study who said, “It’s sort of like it’s ok to be depressed. It’s not ok to be manic. Because, if you’re manic, then they’ll lock you up, or put a straight jacket on you, or something” (8, p. 63).

Acceptance and Hope

Another theme that seemed to be captured in some of the studies was a sense of acceptance and hopefulness [1,2,6]. The authors of the studies used phrases such as ‘self-acceptance’ (1, p. 130), ‘personal growth’ (2, p. 1227) and ‘a hopeful future’ (2, p. 1229) to describe this aspect of experience for participants. It was difficult to ascertain a consistent message from the studies about what acceptance involved. This could be due to the complicated and dynamic process of acceptance that was outlined by a participant in one study who described the process of acceptance as, “a whole bunch of different things (that) happen at different times, like physical acceptance of it, and the spiritual and emotional, and acceptance of the past and all the fears and things that go with it; it’s quite a complex process” (6, p. 32).

Evaluating Epistemological Soundness

To assess the quality of these studies this review draws on the guidelines for good qualitative research developed by Yardley (2000). These consist of three guiding principles discussed below.

Overall Appraisal of Primary Studies

As a whole, the studies reveal some interesting trends in the way the experience of bipolar disorder has been explored in qualitative research. It is notable that common themes emerged from research that span across five different countries. This may imply that there is a shared quality to the way in which different cultures socially construct and understand the psychological impact of being given a diagnosis of ‘bipolar disorder’. This could reflect something regarding the ‘international community of construction’ aided by technological advances in the 21^st century. Alternatively, these commonalities could be perceived as supporting the notion that the participants’ experiences reflect an ‘actual phenomenon’ that is less socially constructed and more inherent in ‘human nature’ itself.

One striking feature of the research is that all the studies were undertaken in developed and westernised countries. Furthermore, only one of the studies focused on a population whose first language was not English [2]. This may have contributed to the largely reciprocal nature of the concepts, metaphors and ideas expressed by authors and participants across studies. For example, the theme of ‘struggles with identity’ is perhaps a construction more consistent with the values and assumptions of westernised societies, and may not arise in research undertaken in more eastern cultures.

It is also notable that with the exception of one study, the research was all undertaken in the last decade. This may reflect an increasing popularity of qualitative methods or cultural shifts towards person-centred practice, where the personal narratives of service-users are given greater value than within previously dominant expert-practitioner models of working. All these studies reflected a sense of person-centred practice in their sensitivity and respect towards participants. However, most of the studies stopped short of stepping outside a medical model in taking the notion of ‘bipolar disorder as an illness’ at face value and using ‘symptom-based’ language. Furthermore, the participants were not active parts of the research process following data-collection, with the exception of one study that sought participant feedback on the themes that emerged [6].

Another important feature of this body of research is that in almost all the studies the chief investigator (first named author) was female [1,3,4,5,6,7,8,9]. Furthermore, this is coupled with a participant sample where males are under-represented, given the equal prevalence of the application of a bipolar disorder diagnosis among the genders (Newman et al., 2001). It is possible that the paradigm of qualitative research fits more closely with dominant discourses available to women than the discourses available to men in western societies, which would lead both to women researchers being more interested in this method of study and women more likely to agree to participate in such research. The relative absence of male narratives in these studies may preclude developing understandings about how men who are given this diagnosis make sense of their experiences.

It is interesting that the majority of studies chose a semi-structured interview as the data-collection method. The popularity of this approach may reflect perceived best practice for undertaking good qualitative research, cultural traditions or practical issues. It could also be argued that interviews are only a tentative and small move away from the quantitative methodology of questionnaires.

Some of the primary research studies used more diverse and creative methods of data collection (such as therapy sessions and group forums), which raises a question about whether it is valid to have compared these differing studies in our analysis. It is my hope that including such a variety of studies can provide the foundation for a wider repertoire of discourses to be drawn on, which may enhance the helpfulness of this review, whilst at the same time it is important to acknowledge that this limits the validity and reliability of conclusions drawn from these studies as a whole.

Similarly, the studies also take different positions with regard to perceiving bipolar disorder as representing an ‘illness’ [1,2,3,4,5,6,9] or viewing participants as a group of people who may have some shared experiences of distress that have contributed to them being labelled with the diagnosis of bipolar disorder [7,8]. On the one hand, this is problematic and undermines the cohesiveness of the findings but, on the other, it also perhaps usefully reflects the real world dilemma for practitioners who have to work alongside different models and find ways of communicating different ideas to service-users in respectful ways. One concern however, is that the majority of the studies do not even acknowledge they are taking a position within the disease model and as such create the illusion of an undisputed ‘truth’ that bipolar disorder is an illness.

The use of interpretive theme analysis in these studies may reflect a compromise in the research community between quantitative empirical research and qualitative methods due to using an approach that shares a quantitative assumption that individuals hold knowable, stable and robust assumptions and constructs that can be identified and assessed. One study used a more ambitious form of interpretive theme analysis [8], that of grounded theory, aiming to develop understandings that are generalisable to wider groups of people (Dallos & Vetere, 2005).

Theoretical Perspectives Used to Understand the Phenomenon

The studies explored the experiences of people who have been given the diagnostic label of bipolar disorder through the lenses of several theoretical positions. Some of the studies drew mainly on one theoretical perspective [1,3,5] for understanding these experiences, whereas others offered more eclectic perspectives [6,7,8,9]. All of the studies with the exception of one [3] explored the experiences of participants drawing on social psychology ideas. This seems consistent with the focus of participants on the connection between their experiences and their social relationships.

It is also possible however that this theoretical position may have impacted the framing and execution of the design, analysis and interpretation of findings towards an account convergent with social and psychological theories. In contrast, as discussed above, many of the studies were based firmly within a psychiatric ‘illness’ model of bipolar disorder that could be argued to be partly in contradiction with some of the social and psychological theories used to explain the findings.

The application of social theory was clearly evident in these studies. In one study, the author took a clear position of social constructionism from the outset [7] and in others the authors were influenced overtly by psychosocial theories [1,5] and by social ideas about the impact of stigma [2,4]. In other studies, the specific use of social theory was less explicit but remained present [6,8,9]. Two of the studies used specific psychosocial theories to explain their findings; Erikson’s theory of identity diffusion in psychosocial development [1], and self-efficacy theory [5]. The absence of intrapsychic theories may account for the lack of explicit descriptions of emotional experience in these studies, becoming a subjugated discourse in the context of the more tangible social disruption experienced by the participants.

Three of the studies drew on theories derived from research into perceptions of illness and illness experiences in physical health practice [4,8,9]. This focus provided a useful comparison with similar literature that shared important experiential challenges with the accounts from participants in the studies, such as the experience of stigma and the challenge of identity. However, it could be argued that this reinforces the construction of these experiences as ‘an illness’ called ‘bipolar disorder’ that limits the authors’ ways of understanding the participants’ narratives.

Developments in Theory Derived From the Research

All the studies in this review exercised caution in making extensive theoretical claims on the basis of their findings. Instead, the studies opted to describe important themes that had been recognised by their participants, postulating that these may be useful to consider in clinical work or future research. However, some of the studies offered tentative theoretical developments on the basis of their findings.

One study applied self-efficacy theory (Bandura, 1995) to the understanding of the nature of bipolar disorder [5]. The authors reflected on ideas from self-efficacy theory in relation to their findings and concluded that a person’s lack of belief in their ability to control ‘moods’ and ‘symptoms’ may influence their ability to develop self-management skills in order to help them manage their difficulties. The authors discuss implications for addressing self-efficacy beliefs in clinical work and measuring these beliefs as part of future outcome research.

One study attempted a more ambitious theoretical synthesis of its findings by proposing a new model for understanding the process of “responding to challenges to identity” [8]. The author suggests that an understanding of this model can enhance psychotherapeutic work with people who have a diagnosis of bipolar disorder.