‘What People Diagnosed with Bipolar Disorder Experience as Distressing’: A Meta-Synthesis of Qualitative Research

Helen Warwick1

Warren Mansell1

Carly Porter1

Sara Tai1

1School of Health Sciences, Division of Psychology and Mental Health, Faculty of Biology, Medicine and Health, Manchester Academic Health Science Centre, The University of Manchester. 2nd Floor, Zochonis Building, Brunswick Street, Manchester. M13 9PL, UK.

Corresponding author: Dr Warren Mansell (warren.mansell@manchester.ac.uk) School of Health Sciences, Division of Psychology and Mental Health, Faculty of Biology, Medicine and Health, Manchester Academic Health Science Centre, The University of Manchester. 2nd Floor, Zochonis Building, Brunswick Street, Manchester. M13 9PL, UK.

RUNNING HEAD: Meta-Synthesis of Bipolar Distress

Word count (excluding abstract, tables, figures and references): 7064

Abstract word count: 244

Abstract

Background: Bipolar disorder (BD) is considered to have a significantly negative impact on functioning and prognosis is considered poor. Current treatments are modestly effective and predominantly focus on reducing extreme mood fluctuations and symptoms, . Understanding distress may help inform available interventions, yet what people with BD experience as distressing has not been exploredless is known about what patients themselves describe as distressing. Therefore we aimed to assess this through a systematic review. .

Methods: A comprehensive literature search was conducted in four major bibliographic databases in August 2017, updated in July 2018. Qualitative studies exploring BD were included if they contained themes related to distress. First person accounts from people with BD discussing what they experience as distressing were extracted and synthesised using thematic synthesis. Author interpretations were also extracted to support the synthesis.

Results: Twenty-four studies were included. Five main analytical themes were developed: 1) diagnosis, 2) loss, 3) uncertainty, 4) threat and 5) relationships. Two further crosscutting themes were identified as 1) stigma and 2) fear of relapse. Implications for interventions to focus on these causes of distress also emerged.

Limitations: The included studies did not adequately examine the authors’ potential own biases and influences within their interpretations of the data. One author predominantly undertook data extraction and coding for the current review, although research team discussions led to an agreed consensus on themes.

Conclusions: This was the first qualitative study to specifically explore distress in BD. The meta-synthesis highlights important areas that people with BD experience as distressing. Adaptations to current interventions, to focus on what people find distressing could seek to improve treatment outcomes.

Keywords: Bipolar disorder, distress, qualitative research, meta-synthesis, thematic synthesis.

1.Introduction

Bipolar disorder (BD) is a mental health diagnosis characterised by extreme variations in mood (i.e. from manic or hypomanic high moods, to depression or very low moods). It is considered one of the main origins of disability amongst young people and is thought to affect more than one percent of the world’s population (Grande et al., 2016). Significant impact on functional ability, alongside high distress and suffering, are reported by those diagnosed (Woods, 2000). Prognosis is generally viewed as poor, with the historical context of the diagnosis suggesting that it is a lifelong condition (First et al., 2015).

Psychological interventions such as cognitive behavioural therapy (CBT), for BD are recommended in The National Institute for Heath and Care Excellence (NICE, 2014) guidance as a first-line intervention for acute episodes and long-term relapse prevention. However, interventions are largely reliant on evidence-based outcomes measured using predetermined constructs. It is unknown how much these outcome measures accurately represent the experiences of people with a diagnosis of BD. It is uncertain what people diagnosed with BD perceive to be distressing and what they report to experience as beneficial within psychological therapy. Furthermore, of the few existing research trials, many do not explore these subjective views so the degree of variation in the experiences of people with this diagnosis is unclear. The prominent methodology of randomised controlled trials actively ignores this individual variation and direct personal experiences of service-users (Cooke et al., 2010), perhaps further limiting the validity of current interventions or potential impact.

The effectiveness of CBT in reducing relapse rates for BD has been questioned (Lynch et al., 2010). Findings that a combination of psychoeducation and CBT led to a large and significant effect in reducing symptoms of mania, but not depressive symptoms raise further uncertainty (Lynch et al., 2010). Other studies suggest that CBT interventions show mild-to-moderate effect sizes in improving symptoms and functioning, and decreasing relapse rates in BD (Chiang et al., 2017). However, response rates, and therefore the number of people sufficiently treated based on therapy interventions, are largely unknown. A further recent meta-analysis demonstrated that current psychological interventions are not sufficiently supported by robust evidence to advocate their use to support recovery in people with BD (Chatterton et al., 2017). This would suggest that without truly understanding what service-users experience as distressing, there is a risk that treatment will not target the most pertinent issues.

It is generally assumed that it is the experience of symptoms themselves or the extreme fluctuation of moods that cause distress. For example, the Integrative Cognitive Model (ICM) of BD explains how extreme appraisals surrounding positive and negative affect act to maintain extreme mood fluctuations. The psychological intervention based on this model then seeks to alter these extreme appraisals in an effort to manage mood changes (Mansell et al., 2007). Additionally, the short-term and primary intervention remains to be medication, which aims to stabilise through reducing mood fluctuations (Walsh et al., 2016; NICE, 2014). Non-adherence is common (Colom et al., 2005) and may result from the impact of side effects and attitudes surrounding taking medication (Lingam and Scott, 2002). Unsurprisingly, non-adherence to medication and psychological interventions are known to further adversely influence prognosis (Gaudiano et al., 2008). It is plausible that improving interventions to focus more on the factors that are experienced as most distressing may help improve engagement and effectiveness of treatments.

The term ‘distress’ is frequently used within psychological literature but the construct has been described in various ways. For example, Ridner (2004) sought to attempt to distinguish distress from similar concepts such as stress. Five characteristics for distress were identified: 1) a perceived inability to cope effectively, 2) a change in emotional status, 3) feelings of discomfort, 4) communication of this discomfort, either physically or verbally, and 5) experiences of harm (either permanent or temporary). Ridner (2004) concluded that the presence of several of these characteristics would indicate an individual is experiencing psychological distress. Certainly psychological distress has been recently described as ‘an unpleasant subjective state’ opposite to wellbeing (Ross, 2017) and the experience of mental distress as ‘essentially painful and difficult’ (Chassot and Mendes, 2015). Indeed, distress has been described to be an experience that impacts upon everyday life and in which some modification is desired (Tarrier et al., 2007). For the purpose of the current study a clear definition of distress was required. Based on existing literature, distress was conceptualised as: 1) where some aspect of associated negative affect is clear, and/or 2) it is inferred that an aspect of change is desired. Due to the lack of specific research in this area for BD, a broad definition was agreed. This aimed to account for the fact that distress is reported to often be expressed by ‘non-specific affective manifestations’ (Andrade et al., 2016).

Quantitative research indicates that it is important to understand distress beyond the experience of psychiatric symptoms. For example, within studies of first episode psychosis, subjective distress has been found not to correlate with the severity of positive and negative psychotic symptoms (Vracotas et al., 2007). Yet, subjective distress is associated with the impact of the side effects of medication in early onset psychosis (Schimmelmann et al., 2005), and in a large-scale longitudinal study including bipolar patients, distress predicted treatment-seeking over and above clinical and demographic variables.

Distress is already considered likely to arise from beyond the experiences of symptoms of psychopathology. Comorbidities such as anxiety are usually associated with poorer prognosis and greater levels of distress ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "10.1111/acps.12080", "ISBN" : "1600-0447 (Electronic)\\r0001-690X (Linking)", "ISSN" : "0001690X", "PMID" : "23379898", "abstract" : "OBJECTIVE: This review explores the influence of anxiety and depression on the experience of positive psychotic symptoms, and investigates the possibility of a causal role for anxiety and depression in the emergence and persistence of psychosis.\\n\\nMETHOD: A systematic literature search was undertaken, producing a number of papers which comment on the links between anxiety and depression, and the experience of delusions and hallucinations. In addition, evidence which could contribute to our understanding of the causal role of anxiety and depression was highlighted.\\n\\nRESULTS: The findings show that both anxiety and depression are associated in meaningful ways with the severity of delusions and hallucinations, the distress they elicit and their content. However, the cross-sectional nature of the majority of studies and the focus on certain symptom subtypes tempers the validity of the findings. Data from non-clinical samples, studies which track the longitudinal course of psychosis and those which examine the impact of anxiety and depression on the prognosis for people experiencing psychosis, offer some support for the possibility of an influential role for anxiety and depression.\\n\\nCONCLUSION: We conclude that anxiety and depression are related to psychotic symptom severity, distress and content and are also linked with sub-clinical experiences, symptom development, prognosis and relapse. These links may imply that anxiety and depression could be targets for therapeutic intervention. The article concludes with suggestions for further research, highlighting avenues which may circumvent the limitations of the body of work as it stands.", "author" : [ { "dropping-particle" : "", "family" : "Hartley", "given" : "S.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Barrowclough", "given" : "C.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Haddock", "given" : "G.", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Acta Psychiatrica Scandinavica", "id" : "ITEM-1", "issue" : "5", "issued" : { "date-parts" : [ [ "2013" ] ] }, "page" : "327-346", "title" : "Anxiety and depression in psychosis: A systematic review of associations with positive psychotic symptoms", "type" : "article-journal", "volume" : "128" }, "uris" : [ "http://www.mendeley.com/documents/?uuid=cdcf0e93-76c8-4284-bf50-5b20ac3a784a" ] } ], "mendeley" : { "formattedCitation" : "(Hartley et al., 2013)", "plainTextFormattedCitation" : "(Hartley et al., 2013)", "previouslyFormattedCitation" : "(Hartley et al., 2013)" }, "properties" : { "noteIndex" : 2 }, "schema" : "https://github.com/citation-style-language/schema/raw/master/csl-citation.json" }(Hartley et al., 2013). Other factors, such as discrimination and lack of support from services to continue with goals, such as education, also appear to heighten distress ADDIN CSL_CITATION { "citationItems" : [ { "id" : "ITEM-1", "itemData" : { "DOI" : "http://dx.doi.org/10.1177/0020764005057386", "ISSN" : "0020-7640", "abstract" : "Background: Work is important for mental health but we are only just beginning to understand why so few people with psychosis in the UK work. Aims: To identify the opinions of a purposive sample of patients with psychosis on themes related to employment. Method: A thematic analysis of 15 semi-structured interviews with people with schizophrenia or bipolar affective disorder. Results: Participants identified a range of advantages to working but also expressed substantial doubts. Symptoms, medication and potential damage to health are the problems that people believe affect their ability to work. Most people would not tell their employers about their illness because they feared discrimination during the selection process, but believed it could help their chances of retaining a job if employers knew. A number reported a lack of encouragement to work from mental health professionals and not enough helpful employment services. Conclusions: Although most people want to work, given the pressures they face some may choose not to. Barriers that people face are both internal and external and these interact. (PsycINFO Database Record (c) 2016 APA, all rights reserved)", "author" : [ { "dropping-particle" : "", "family" : "Marwaha", "given" : "Steven", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Steven", "given" : "Johnson", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "International Journal of Social Psychiatry", "editor" : [ { "dropping-particle" : "", "family" : "Bacani-Oropilla Bassett, Becker, Bell, Berndt, Bland, Blumenberg, Boardman, Boardman, Crisp, Crowther, Drake, Gureje, Hatfield, Huxley, Jahoda, Jahoda, Jeffreys, Kelly, Lehman, Lehman, Manning, Marwaha, Mueser, Perkins, Polak, Pope, Priebe, Reker, Ridgew", "given" : "Bartley", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "id" : "ITEM-1", "issue" : "4", "issued" : { "date-parts" : [ [ "2005" ] ] }, "page" : "302-316", "publisher" : "Sage Publications", "publisher-place" : "S. Marwaha, Department of Psychiatry and Behavioural Sciences, Royal Free and University College London Medical Schools, Archway Campus, Highgate Hill, London N19 5LW, United Kingdom. E-mail: s.marwaha@ucl.ac.uk", "title" : "Views and experiences of employment among people with psychosis: A qualitative descriptive study", "type" : "article-journal", "volume" : "51" }, "uris" : [ "http://www.mendeley.com/documents/?uuid=c012b9e7-b941-4430-9955-9379306a6277" ] }, { "id" : "ITEM-2", "itemData" : { "DOI" : "http://dx.doi.org/10.2975/26.2003.217.231", "ISSN" : "1095-158X", "abstract" : "To study barriers to higher education, this qualitative study explored the college experiences of 35 people with psychiatric disabilities. Academic performance was related to psychiatric symptoms which subsequently led to college attrition. However, many research participants showed remarkable persistence in pursuit of academic goals. Campus-based support services were rarely utilized. Implications for psychiatric rehabilitation practice are discussed.", "author" : [ { "dropping-particle" : "", "family" : "Megivern", "given" : "D", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Pellerito", "given" : "S", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" }, { "dropping-particle" : "", "family" : "Mowbray", "given" : "C", "non-dropping-particle" : "", "parse-names" : false, "suffix" : "" } ], "container-title" : "Psychiatric Rehabilitation Journal", "id" : "ITEM-2", "issue" : "3", "issued" : { "date-parts" : [ [ "2003" ] ] }, "page" : "217-231", "publisher" : "Boston University (940 Commonwealth Avenue West, Boston MA 02215, United States)", "publisher-place" : "D. Megivern, Washington University, School of Social Work, Seattle, WA, United States", "title" : "Barriers to higher education for individuals with psychiatric disabilities", "type" : "article-journal", "volume" : "26" }, "uris" : [ "http://www.mendeley.com/documents/?uuid=bf8b3c33-5647-4904-8a2c-37117d575ed0" ] } ], "mendeley" : { "formattedCitation" : "(Marwaha and Steven, 2005; Megivern et al., 2003)", "plainTextFormattedCitation" : "(Marwaha and Steven, 2005; Megivern et al., 2003)", "previouslyFormattedCitation" : "(Marwaha and Steven, 2005; Megivern et al., 2003)" }, "properties" : { "noteIndex" : 2 }, "schema" : "https://github.com/citation-style-language/schema/raw/master/csl-citation.json" }(Marwaha and Steven, 2005; Megivern et al., 2003). Wider social factors, including experiences of poverty and problems with basic needs such as housing, are also plausibly involved.

The wider literature has explored, more directly, which factors are involved in leading to distress for certain population groups. For example, Losada et al. (2010) examined caregiver distress and further studies have been conducted with clinical and non-clinical populations exploring psychotic-like experiences (Brett et al., 2014). Andrade et al. (2016) recently investigated subjective distress in 401 patients diagnosed with a psychotic disorder. Distress was reported as ‘a need’ by 165 (41%) patients. A lack of family support in accompanying people to treatment and higher levels of psychopathology predicted this ‘need’ being reported as unmet. Most recently qualitative explorations within psychosis have been undertaken. Griffiths et al. (2018) completed a meta-synthesis of 33 studies suggesting various sources of both intrapersonal and interpersonal distress, with an apparent loss of control as key. Nonetheless, whilst many qualitative studies within BD have touched upon what is distressing, none have directly set out to explore distress within BD.

There is, therefore, a need for consolidation of the existing qualitative literature to begin to explore what people with BD experience as distressing. The current review aimed to synthesise existing qualitative literature containing first person accounts from people with a diagnosis of BD. Since there is no known qualitative research specifically exploring distress in BD, relevant material was extracted from other qualitative literature. Specifically, the data was extracted from studies including people with BD where at least one of the themes was related to distress. This enabled data in which people discuss what they find distressing to be captured and synthesised. The review aimed to answer the question: ‘What do people diagnosed with BD experience as distressing?’

2. Method

The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA-P) statement guidelines ( Moher et al., 2015). A search strategy and protocol were developed to guide the review and registered with the PROSPERO international prospective register of systematic reviews prior to its commencement (registration number: CRD42017064868).

To ensure the quality of reporting in this meta-synthesis, the Enhancing Transparency in Reporting the Synthesis of Qualitative Research guidelines (ENTREQ, Tong et al., 2012) were followed. ENTREQ aims to standardise the review process by outlining 21 staged items necessary for synthesising qualitative literature. Broadly, this meta-synthesis was conducted in four main stages in accordance with ENTRQ: the development and conduct of a systematic search strategy, screening and identification of relevant papers, paper quality appraisal and data synthesis.

2.1 Searches and screening2.1.1 Search strategy

The SPIDER framework tool (Cooke et al., 2012) guided the generation of an appropriate search strategy. MeSH (Medical Subject Headings) terms also assisted in the generation of search terms. Search terms for two categories were used: ‘bipolar’ terms and ‘qualitative’ terms. A third category of ‘service-user’ related terms were removed following initial scoping exercises because it limited the collection of identified target papers. In line with Centre for Reviews and Dissemination (CRD, 2009) guidance, it was not deemed necessary to use all elements within the SPIDER framework. To separate categories, the Boolean operator 'AND' was used, whilst 'OR' was used within them. MeSH terms within the search were auto exploded where appropriate. Consultation was sought from systematic review advisers at the University of Manchester. This ensured thoroughness and sufficiency of the developed strategy and terms. Advisers also provided guidance on the selection of appropriate databases to search.

Terms were searched as keywords to ensure all relevant articles were collated, since qualitative articles often use a variety of title variations. Wildcard asterisks were used where appropriate. The systematic search was undertaken across four electronic databases: Embase, Ovid MEDLINE, PsycINFO and ASSIA, in August 2017 by the first author. These databases aimed to provide a sufficient overview of journals. Searches were adapted as necessary across all four databases, maintaining similarity where possible. Results were limited to peer reviewed journals and human participants. The final search terms are shown in Table 1.

[INSERT Table 1. Final search terms]

2.1.2 Inclusion and exclusion criteria

Inclusion criteria were:

1. Qualitative research (i.e. the study used a recognised and valid qualitative methodology)

2. Published in the English language in a peer-reviewed journal

3. Contains first-person accounts of distress reported by individuals who had a diagnosis of BD (i.e. quotations discussing distress are reported within the article)

4. *The study involved only individual interviews with participants (i.e. if the study only or also used other qualitative methods of exploration such as focus groups then it was not included)

5. *The study must have at least one stated theme that is related to distress or a source of distress (in accordance with the definition of distress used in the current review).

Exclusion criteria were:

1. Studies that utilised quantitative or *mixed methods methodology

2. Studies using only theoretical or observational data

3. Research studies on experiences of BD symptoms where service-users have an organic basis for their symptoms

4. Case studies or single case designs

5. Studies where the BD group qualitative data was not analysed separately from people with other diagnoses

6. *Studies which only used focus groups or questionnaire designs, or where data from the individual interviews was not analysed separately from these additional methods

7. *Studies with other participant groups (i.e. study must only be looking at BD populations specifically)

8. *Studies focused only on a specific intervention or notion.

Criteria marked with an asterisk, (inclusion criteria 4 and 5, and exclusion criteria 1 and 6-8), were added by the research team in December 2017. These assisted in reducing and selecting the most appropriate papers for the review during the screening process. No limitations were set for type of qualitative methodology or time period of the study to aim to capture all relevant data within this subject area.

2.1.3 Screening

The search strategy was informed by the two-step process of study selection in systematic reviews (Boland et al., 2017) in which overall search results are first reduced by screening title and abstract and then the full papers. Searches and screening were conducted in four stages:

Stage 1: Electronic databases were searched using the two categories of search terms as above. All titles of collected articles were entered into Mendeley Desktop reference manager (version 1.16.1).

Stage 2: Searches returned 5201 records. Removal of duplicates reduced this by 1369. HW screened all titles and abstracts against the initial inclusion and exclusion criteria. All records that were ineligible based on title and abstract were removed at this stage (n=3615). CP independently screened 33.3 percent of the records (n=1276). Discussions between CP and HW occurred after initial screenings of the first 10, 30, 50 and 60 titles and abstracts. This was to determine any ambiguities and reach a consensus in relation to inclusion or exclusion criteria. Fleiss’s Kappa (Fleiss, 1971) statistic was used to calculate the inter-rater reliability between raters which was found to be 0.69. Scores over 0.61 are considered to signify substantial inter-rater agreement (Landis and Koch, 1977). Furthermore, where discrepancies within the screening occurred, these were due to the second reviewer (CP) being more stringent on exclusion at this level. The main screener’s (HW) judgements were agreed as correct in these instances.

Stage 3: HW screened all remaining full papers and those that did not meet inclusion criteria were excluded. A randomly identified 20 percent were also screened blind by both WM and ST. Reliability between the three screeners was calculated between each pair using Fleiss’s Kappa (HW and ST=0.71, HW and WM=0.72, ST and WM=0.74). The calculations indicated substantial agreement between all raters. Discrepancies were discussed and the inclusion and exclusion criteria updated. HW then rescreened all papers at full paper stage to account for these additional criteria. Any further uncertainty over eligibility was discussed with WM and ST.

Stage 4: Reference lists for all included papers were screened at title, abstract and full paper where necessary to identify any further relevant papers. Full citation searches of included papers were also conducted for the same purpose. HW conducted these screening phases in January 2018.

Stage 5: The searches across all four databases were re-run July 2018 by HW to account for any recent publications. Searches were replicated identically and results (beyond the original search date) were screened as before. Uncertainties around eligibility were discussed with WM and ST.

2.2 Data synthesis

All included full text articles were uploaded verbatim to NVivo (version 11) software. A thematic synthesis was deemed most appropriate for this meta-synthesis. Thematic synthesis is often used to synthesise qualitative findings from multiple studies in systematic reviews (Ring et al., 2011). The method, described by Thomas and Harden (2008), allows the integration of multiple sources of individuals’ views and experiences to be taken into account. It also allows for the integration of different epistemological viewpoints within studies to be combined. Further interpretations are then developed from reoccurring themes from within the current authors own epistemological position.

The first author began data synthesis through repeated reading of the papers to become immersed in the data. As recommended by Thomas and Harden (2008), all relevant data within the ‘findings’ or ‘results’ sections of the papers were extracted. Exceptions to this were if tables of example quotations linked to relevant themes were within other sections of the paper, the appendices, or as supplementary material (e.g. as in Granek et al., 2016). In an attempt to capture all relevant data, these sections were also coded. In line with Thomas and Harden (2008) both first person accounts (using participant quotations) and author interpretations were coded as first and second order constructs respectively.

Data synthesis was completed in the following three stages (Thomas and Harden, 2008):

1. Initial line-by-line coding of relevant data segments was completed to generate descriptive codes. Some sections of data were coded with multiple codes.

2. Codes were then grouped and compared across papers using both first and second order constructs to develop descriptive themes via the constant comparison method (as in grounded theory, Barnett-Page and Thomas, 2009). These descriptive themes remained close to the meaning of the primary data. The use of NVivo software assisted with this process of adding to developing themes and creating new ones where necessary as all data across papers was coded.

3. Finally, development of higher-level analytical themes was achieved through a process of refinement and discussions within the research team. This aimed to take the synthesis beyond that of the existing literature to address the research question for the review using an inductive approach (Thomas and Harden, 2008).

Ongoing discussions with supervisors ensured a ‘triangulation’ process throughout the synthesis.

2.3 Appraisal of study quality

Study characteristics were summarised using a standardised form via an Excel spread sheet (see Table 2 in the results section). Where basic age and gender information was not reported, authors were contacted and details added upon receipt.

To assess the value and impact of study findings, and therefore draw appropriate conclusions, all included papers were assessed for quality. The Critical Appraisal Skills Program (CASP, 2017) Qualitative Research Checklist for qualitative literature was used. The CASP has been frequently used in assessing quality for qualitative syntheses (Dixon-Woods et al., 2007), including those using thematic synthesis (e.g. Satink et al., 2013). The CASP was designed to consider appraisal of different areas of the study and therefore does not give an overall rating (CASP, 2017). This was considered sufficient for the purposes of quality rating within this review, i.e. to provide a level of quality context, since papers were not excluded from the review based on quality ratings. The CASP tool assesses 10 key areas including: aims and appropriateness of the methodology; data collection and analysis; and consideration of ethical issues and reflexivity. HW assessed each study for quality. Twenty percent of papers were also randomly identified for blind assessment by WM and ST. Discrepancies were discussed. Inter-rater reliability was calculated using Fleiss’s Kappa (HW and ST= 0.65, HW and WM=0.61, ST and WM=0.33). The calculations importantly indicated substantial agreement between the main rater and both supervising researchers’ ratings.

3. Results

Electronic searches identified 3832 records after duplicate removal. 3615 records were excluded following title and abstract screening. Full paper screening excluded a further 195 records. Two further records were identified via citation and reference checks and screening as appropriate. Overall 24 records were included. The PRISMA flowchart demonstrating the identification of appropriate studies and reasons for exclusion at each stage is presented in Figure 1.

In the re-running of the searches, a further 833 papers were identified (following deduplication). Of these, 818 were excluded based on title and abstract using the original inclusion and exclusion criteria. Following full paper screening of 15 papers, only one paper (Owen et al., 2017) was determined to have met the review’s inclusion criteria. The study was checked for consistency and it was identified that the paper sufficiently demonstrated similar themes to those extracted in this review’s analysis. Due to the methodology used, it was deemed not appropriate to add in the study to the overall findings since full coding would have been biased by the already completed analysis and model of the review.

3.1 Study and participant characteristics

As shown in Table 2, the 24 studies included in the review represented the views of 320 individuals with diagnosis of BD. Studies were conducted in a range of countries including the UK, USA, Sweden, Norway, Denmark, The Netherlands, Israel, New Zealand and Australia. Participants’ ages ranged from 18 to 71 years. Three studies solely focused on female viewpoints and all others contained a gender mix (217 female; 103 male). Socio-economic status was not reported in any of the included studies. Education level was reported in 4 studies and employment status in 12 studies. Both education level and employment status of participants varied across studies and different methods of reporting limited the calculation of the overall numbers. Five studies focused on one type of BD diagnosis (4 on BD I and 1 only BD II), 11 contained a mix and 8 studies did not specify diagnosis beyond BD. Sample sizes varied from 4 to 25 participants, with the average approximately 14. Ethnicity was reported in 8 studies.

1

Meta-Synthesis of Bipolar Distress

4

Meta-Synthesis of Bipolar Distress

[INSERT Figure 1.

(Table 2. Summary of included study characteristics])[INSERT

Key: ‘?’ denotes unknown

3.2 Study quality

CASP ratings are shown in Table 3. All 24 studies appropriately used a qualitative methodology and research design and specified clearly stated aims. Recruitment strategy appeared appropriate in 22 of the studies. In one study it was considered that the strategy would have led to a biased sample (Crowe et al., 2012) and in another it was unclear (Van den Heuvel et al., 2015). Only 6 studies adequately discussed the researchers’ own role and the potential influences and biases this might have on the study or relationship with the participants. Ethical issues were adequately addressed in 18 studies. All studies gave an appropriate statement of findings, although the data analysis was considered sufficient in only 22. All studies provided valuable contributions to research.

[INSERT Table 3. Study quality ratings using the CASP criteria]

Key: 1. Was there a clear statement of the aims of the research? 2. Is a qualitative methodology appropriate? 3. Was the research design appropriate to address the aims of the research? 4. Was the recruitment strategy appropriate to the aims of the research? 5. Was the data collected in a way that addressed the research issue? 6. Has the relationship between researcher and participants been adequately considered? 7. Have ethical issues been taken into consideration? 8. Was the data analysis sufficiently rigorous? 9. Is there a clear statement of findings? 10. Is the research valuable?

3.3 Qualitative evidence synthesis

Five analytical themes (Thomas & Harden, 2008) relating to what individuals with a diagnosis of BD experience to be distressing were identified: 1) diagnosis, 2) loss, 3) uncertainty, 4) threat and 5) relationships. Each theme contained between three and eight subthemes. Two further themes, found to be crosscutting across all other themes, were identified as: 1) stigma and 2) fear of relapse. See Table 4 for which papers contained codes for the developed themes and Table 5 for further quotation examples. The main themes are represented in a model of what people with BD experience as distressing (see Figure 2) and are described in more detail below using illustrative quotes. Subthemes are discussed within each numbered theme (labelled alphabetically).

[INSERT here or as supplementary material: Table 4. A table summarising which included papers contained codes within each developed theme]

[INSERT here or as supplementary material: Table 5. Further examples of coded quotations under each theme and subtheme]

([ INSERT Figure 2. Model of themes reported to cause distress])

3.3.1 Themes

3.3.1.1. Diagnosis

The theme of diagnosis incorporates distress originating from reports of having difficulty identifying with the diagnosis (1a): ‘My wife would probably tell you that I won’t admit it…and I think it’s like that with many forms of mental illness, you don’t want to admit that you have such an illness…that’s my opinion’ (Jönsson et al., 2008). This appeared to be linked to having a mental health diagnosis, rather than BD specifically: ‘It was simply something I could not accept for a long time…This label of being mad–it seemed it came out of nowhere’ (Van den Heuvel et al., 2015).

Medication (1b) was a frequent consequence of receiving a diagnosis. People discussed distress resulting from a lack of sufficient benefit (1bi) from the given treatment: ‘Lisa stated that when she used medication “I still had an episode”, and concluded “what's the point in taking meds if you're still gonna have [an episode] probably?” (Cappleman et al., 2015). Side effects (1bii) of the prescribed medication were another factor people talked about being distressing: ‘That [medication] is not very nice, because I’ve been zombie man for a very long time, since being on medication and it’s really depressing’ (Inder et al., 2010).

Participants reported a feeling of needing to rely on medication (1biii): ‘Mainly there is one method of treating the illness - taking medication. Taking medication is like addiction. Once you are taking it, it does work instantly, thus only medication can help, and the rest of the methods are secondary’ (Wang and Henning, 2010). This was also present, when attempts had been made to come off medication, with unsuccessful consequences: ‘It was my own fault for taking myself off [medication] the other time but I wanted to test it out really’ (Crowe et al., 2012).

Distress resulted from hearing about others [who have had a diagnosis of BD] negative experiences (1c): ‘Some reported searching on the internet and finding inaccurate accounts which had alarmed them and added to their anxiety’ (Dolman et al., 2016). Individuals described that hearing these accounts, along with their own difficult experiences of symptoms, led to a lack of hope (1d): ‘Dark thoughts and images of negative experiences increase to a great degree and are repeatedly shown on an inner movie screen. At these times it becomes difficult to live and hope for a change’ (Rusner et al., 2009).

An overall sense of the long-term nature of BD and the effort required (1e) in its management was another source of distress. Individuals described having to force themselves to use self-management strategies: ‘It feels like it’s not going to end, it’s more something I have to learn to live with…’ (Jönsson et al., 2008), and ‘My number one thing to do…get out of the house…[…] …it’s like…chewing glass…but I make myself do it’ (Fletcher et al., 2013).

3.3.1.2. Loss

The most prominent theme described in all the studies related to distress concerning a loss of fundamental things typically taken for granted. An overall loss of control (2a) was described in relation to managing moods: ‘Cos I’m just totally ruled by my moods’ (Inder et al., 2008) and generally across life: ‘But despite all efforts, it is a sword of Damocles hanging above my head, or some kind of unpredictable wild animal, a predator, that is watching me closely waiting to strike me at any given time. It feels like it isn’t something you can control’ (Van den Heuvel et al., 2015).

A loss of autonomy and confidence (2b) occurred in not being able to make independent choices: ‘[I am] quite strongly resistant to increasing medication dosages, I feel you know a part of me feels like I am taking [medication] in protest. I am absolutely seething; it feels like surrendering more autonomy, not regaining it’ (Crowe et al., 2012). Experiences of hospitalisation, symptoms and loss of other aspects of their life decreased general confidence in oneself: ‘I have felt less trust in myself. I felt I did not have as much confidence in different things that I did’ (Fernandez et al., 2014).

A reduction in work hours or a complete loss of work (2c) was frequently described and often linked to an overall loss of a sense of purpose (2d): ‘One of those consequences was unemployment or early retirement, which led to the issue of how to cope with feelings of purposelessness that could trigger a recurrent depressive episode’ (Van den Heuvel et al., 2015).

Loss of social connection (2e) was described to result from symptoms influencing the ability or desire to engage in social relationships: ‘I isolate a lot. I try to stay away from people; basically just stay in my room. I just lock my doors and stay in the house all the time’ (Blixen et al., 2016). This loss, along with side effects of medication, resulted in a loss of pleasure (2f) being experienced: ‘I know there were days, times, periods that I was depressed enough so that I just kind of went through life. I didn’t feel anything […] I wasn’t enthusiastic about anything…. I just went through the steps of living the way I had to but I didn’t have any joy’ (Venkataraman and Ackerson, 2008).

An overall loss of a sense of identity (2g) was also experienced; ‘Like I actually don’t know who I am’ (Inder et al., 2008) as people tried to separate themselves from BD, or understand how symptoms altered their personalities; ‘I was a person I did not want to be. I did things I would not normally do’ (Fernandez et al., 2014).

Individuals described ‘...working at 0.1% of your capacity…’ (Mortensen et al., 2015) and an overall sense of loss of functioning (2h) due to lack of control over symptoms, or all efforts being focused on their management.

3.3.1.3. Uncertainty

The theme of uncertainty was coded as a source distress as reported across all studies. Prior to getting the diagnosis of BD, some individuals described not realising what was wrong (3a) as a cause of distress. For some, they had always felt ‘different’ (Fletcher et al., 2013) but were uncertain as to why. For others it was more a ‘frustration with the process of diagnosis particularly in relation to getting multiple diagnoses over time’ (Inder et al., 2010).

A sense of uncertainty and ambivalence (3b) was reported around knowing when or when not to disclose their diagnosis to others, knowing whether feelings were symptoms or not, and no longer having a sense of what is ‘normal’ (Jönsson et al., 2008).

Having a lack of understanding, insight and information (3c) was also considered a source of distress. This was described as within themselves: ‘I don’t know whether that’s the normal me, or whether it’s the medicated me’ (Mansell et al., 2010); or from others’ including professionals: ‘those who were not referred to a specialist felt let down by the lack of information available from professionals they consulted for advice’ (Dolman et al., 2016).

Experiences of conflict and dilemmas (3d) appeared to be sources of distress and related to a range of other areas including taking or changing medication, considering starting a family, or experiences of moods themselves. For example: ‘I said, “No, I am not going to take them, I do not want the medication’. I would say, “Well here is my arm, you can inject me, but I am not going to swallow it because I do not want it’ (Fernandez et al., 2014). Indeed, the distress experienced by not knowing what to do to help self (3e) often led to people engaging in self-destructive behaviour: ‘Whenever I would get that surge, agitation or panic, like I don’t know what to do with it so I’d go and like cut my arms up and things like that’ (Inder et al., 2010).

Individuals discussed distress arising from a difficulty in finding a balance (3f), often having to prioritise others needs before their own: ‘It is difficult to find a balance and have enough strength, but my children are the most important’ (Tjoflat and Ramvi, 2013).

Distress and uncertainty were also reported to exist through worry about the future (3g) or thinking of what could have been (3h): ‘grief is experienced for having lost important time in life by not having been able to understand life with BD as well as for not having energy to live more than half the life one wishes to live’ (Rusner et al., 2009).

3.3.1.4. Threat

First person accounts highlighted a sense of impending experiential threat. Authors frequently discussed these experiences (in second order constructs) via the notion of ‘symptoms’, although participants themselves did not tend to use this terminology. For example in one paper (Inder et al., 2008) it was stated that ‘dealing with symptoms was identified as a difficulty which made the task of learning problematic.’ However in the related first person account, the participant themself said ‘So, they put me in the top class at [school] which is probably the worst thing they could have done because I had, still was struggling with my emotions too much to listen...’

Experiencing moods and their changes (4a) included high, low and mixed moods, as well as the contrasts between them: ‘I think the mania part was that I would stretch myself until I felt like I was hanging on to a windowsill with my fingertips, ready to drop any time’ (Fernandez et al., 2014); ‘It’s the contrast of extremes: from bathing in champagne to waking up in a tub of black paint’ (Veseth et al., 2012).

The theme changes in thoughts and behaviour (4b) during episodes encapsulates the distress described by people thinking and doing things they would not normally do: ‘Like I actually mentally change and think differently and act differently’ (Inder et al., 2008). Embarrassment and other negative feelings were reported to result from reflecting on what had occurred, which they later regretted. The threat sub-theme viewing self negatively (4c) contains accounts of how individuals describe themselves ‘flawed’ (Crowe et al., 2012) or experience feelings of ‘self-loathing’ (Inder et al., 2008). As the person below describes, these viewpoints arose in daily living, from their own rather than others’ perceptions: ‘When I’m talking to people, I feel really inadequate, I feel like I’m mentally ill. I feel like the guy on the commercial. I feel like I’m a lower class… even though they’ve never said or done anything in that way’ (Crowe et al., 2012).

3.3.1.5. Relationships

The fifth theme of distress related to interpersonal issues. The impact on relationships and others (5a) included loss of relationships such as separation from partners, loss of friendships, or having children taken away. The impact, for example on loved ones, was also discussed: ‘It can be unbearable to think about how one has hurt those who are most important in one’s life’ (Rusner et al., 2009).

A perceived lack of sufficient and consistent support (5b) was reported as ‘a key factor in triggering suicidal thoughts’ (Owen et al., 2015) and generally added to the burden felt. This lack of support extended from social support to services: ‘One mother wanted some service to be available all the time. She reported that she was in a situation in which she was very ill. However, she could not get help at that time because her doctor was out of town, it was past the doctor’s office hours, and the crisis line she tried did not return her call’ (Venkataraman and Ackerson, 2008).

Additional distress resulted from direct poor experiences of professional support (5c), with individuals reporting feeling misunderstood, disrespected, or having a lack of belief and trust in those treating them. For example, this person reflected on the gravity this had on their mood: ‘There have been times in my life where I've not been listened to by professionals and they think they understand my moods but they have not got a clue […] it was a total misunderstanding of someone's thoughts of suicide and that can actually definitely send you over the edge’ (Owen et al., 2015).

Many described distressing experiences where they were not being seen as an individual (5d), but instead as ‘just another number, another file’ (Blixen et al., 2016) or as their diagnostic label: ‘I am not manic depressive, I’m me! What people must bear in mind is that we should not eh ...only be treated on the basis of the disease we have…’ (Tjoflat and Ramvi, 2013).

3.3.1.6. Stigma

The first of the two sub-themes crosscutting all other themes was stigma (6). Individuals perceived stigma to affect how others saw and treated them: ‘You have got this big stamp on your forehead that everyone else sees…All this stuff about equality in our society is just a load of rubbish’ (Fernandez et al., 2014). Others described a sense of unfairness when comparing their experiences of treatment and support to certain physical illness: ‘If you had a diagnosis of cancer, you’d get given every possible outcome of every medication–everything is given to you on a plate…but with bipolar, it shouldn’t be any different, really’ (Dolman et al., 2016).

Stigma also linked the implications of diagnosis (1) with interpersonal issues (5) alongside loss (2): ‘Because of taking medication every day, I could not find a boyfriend. Which man would like to see you take pills every day? Bipolar disorder affects the possibility of getting married’ (Wang and Henning, 2010).

The experiences of external stigma appeared to have a devastating effect on their own identity and view of the self (2g), and was described in second order constructs: ‘All of the participants had experienced stigmatising attitudes from their surrounding environment, which could help to nurture a negative or unrealistic self-image’ (Tjoflat and Ramvi, 2013).

3.3.1.7. Fear of relapse

The second crosscutting sub-theme was a fear of relapse (7). Normal mood changes were regarded as triggers for distress due to the threat (4) they posed: ‘Expectations that ‘down’ days would escalate into a full-blown episode’ (Fletcher et al., 2013). The sense of this was described by some as ‘imminent’ (Mortensen et al., 2015) with this fear linked to experiencing constant uncertainty (3): ‘It becomes so damn obvious, I feel good now but can’t be sure if I will in a year’s time and most other people can do this in some way’ (Rusner et al., 2009).

The fear of relapse also linked with some experiences of loss. For example, a loss of pleasure (2f): ‘... because for me happiness is a dangerous place to be if I’m bipolar, ‘cause am I really happy or am I just going high’ (Russell and Moss, 2013). A loss of a sense of control and autonomy (2a, 2b) in managing moods was also described: ‘In the past I thought I could control myself without taking any medication. Now I wouldn’t think like that […] This illness is very likely to recur. You might feel you have recovered. When you come across the right trigger, it is quite possible you may suffer a recurrence of this illness’ (Wang and Henning, 2010).

4. Discussion

This review presents a synthesis of what people with a diagnosis of BD experience as distressing. Since no known literature exists that is specific to this topic, data was extracted from first person quotations and author descriptions from qualitative explorations into other topics within BD. Data consistent with our definition of distress was extracted and coded within the main synthesis. The review therefore offers a first attempt at understanding what is experienced as distressing by individuals diagnosed with BD.

The review identified a higher number of potentially relevant papers than anticipated. This indicates that whilst research has not specifically focused on distress, individuals with a diagnosis of BD commonly encounter and report a range of distressing experiences. This extends on previous quantitative and qualitative work to explore more directly within BD (e.g. from within psychosis: Andrade et al., 2016; Griffiths et al., 2018). The electronic search strategy and supplementation with citation and reference searches increases confidence that the conclusions of this review are drawn from a synthesis of sufficient evidence. Indeed, ‘conceptual saturation’ whereby sufficient rather than an exhaustive collection of the literature (Thomas and Harden, 2008) was aimed for. This review serves to provide a basis for future direct research exploring factors that are experienced as distressing within BD. It extends on an area that until recently was virtually silenced across mental health problems (Chassot and Mendes, 2015).

The findings of the synthesis identified 5 analytical themes containing 28 subthemes between them. A further two themes were identified that were crosscutting across the others. The largest theme was that of loss. This incorporated loss of control, social connection, purpose and identity. These areas are all fundamental areas of life, typically taken for granted. Indeed, these areas might be considered as human givens (Griffin and Tyrell, 2004). The human givens approach proposes that there are basic needs required for humans to thrive and maintain emotional wellbeing. When these needs are unmet, functionality and the ability to thrive will be compromised. Literature also exists around the impact of the loss of the ability to work towards our goals affecting wellbeing (Kelly et al., 2013). Certainly the perception of direct loss of control or an indirect loss of control over moods, and therefore a reduction in functional ability, could plausibly lead to experiences of distress. It might be that the experience of mood changes leads to perceptions about goals no longer being attainable or evidence is provided to lead to these conclusions, for example via loss of a job. Therefore, being unable for any given time, to work towards desired career goals, or this leading to challenges around self-identity, may cause distress. This loss, alongside uncertainty themes such as worry about the future, may further exacerbate distress. This is consistent with findings that unattainable goals lead to distress and lower wellbeing (Carver and Scheier, 1990). Furthermore, the notion of perceived loss of control, over one of these factors or more broadly, being as a cause of distress corresponds with developing transdiagnostic ideas (Mansell et al., 2009)

The majority of included studies contained reports of distress arising from interpersonal issues. Lack of support and experiences of prejudices and stigma have indeed been suggested to be involved within mental distress (Chassot and Mendes, 2015). This review highlights key themes within the impact of social aspects that appear to cause distress for those with a diagnosis of BD. These include, no longer being seen as an individual and experiences of stigma, as well as a lack of consistent or sufficient support from family, friends and professionals. Furthermore, strong similarities have also been found with the interpersonal and intrapersonal themes of distress highlighted in a recent meta-synthesis on distress within first episode psychosis (Griffiths et al., 2018). This is further evidence that focusing on specific diagnoses may limit our understanding and that transdiagnostic processes and factors could be underlying these presentations.

One of the significant implications of this meta-synthesis is the finding that most of what people report as distressing is not always the primary focus of existing psychological therapies or social interventions. This supports the Chatterton et al. (2017) meta-analysis suggesting that current BD psychological interventions are not sufficient in promoting recovery. This is perhaps because the idiosyncratic causes of distress are usually not targeted in treatments. Undeniably, understanding distress and the factors involved should assist with improving longer-term outcomes. Certainly within schizophrenia, emotional distress has been shown as a key predictor in long term quality of life (Ritsner et al., 2012).

Existing psychological therapies tend to focus on addressing the fear of relapse and work towards a reduction in fear of mood changes, creating relapse prevention and coping plans. One exception is within the ICM model (Mansell et al., 2007). Fear of relapse is targeted within treatment, and appropriately corresponds with the theme developed within this synthesis. However, the ICM model also serves to develop insight and control over extreme positive and negative appraisals of internal states, in turn reducing individuals’ threat and the surrounding uncertainty. Interventions could further be adapted in line with findings from this synthesis, to focus more directly on factors that people with BD actually report to be distressing. Extensions, exploring these findings through interviews with people to ask directly what they feel are the main factors they experience as distressing, will assist with this. However, even in line with this meta-synthesis, focal areas based on the highlighted themes of distress could be adapted to increase intervention effectiveness. For example, therapy increasing tolerance of uncertainty (perhaps in line with the intolerance of uncertainty model by Dugas and Robichaud, 2007) or working more directly on understanding and then managing experiences of threat and anxiety (e.g. as in Jones et al., 2013) are just two potential areas. Furthermore, in order to create further change, work is required across social and public health contexts. This is in order to increase education surrounding mental health difficulties, and work towards a significant reduction in stigma and negative attitudes within our society. Arguably, without significant societal and cultural changes, which extend to also having more linked up services (for example with the inclusion of consistent support across interventions), some people may struggle to achieve better outcomes.

4.1 Strengths and limitations

The 24 studies in this review were predominantly of good methodological quality. The main area of weakness was a failure within these studies to discuss the authors’ and participants’ relationships, and the inclusion of reflexivity statements. These discussions are considered essential in good qualitative research (Braun and Clarke, 2013) and therefore author interpretations (second order constructs) must be taken with care. The review therefore coded these separately and used them to support developing themes based on first person constructs. No themes were based exclusively on existing author interpretations.

A limitation of the review is that one author predominantly undertook all data extraction and coding. However, research team discussions ensured agreement of codes and building themes. The diagrammatic model was also derived from within these discussions. Although a possible advantage of the use of thematic synthesis, the varying levels of supplied demographic data available meant that comparisons within study contexts could not be explored. On the other hand, it maybe that within this field gaining a broader, more generalisable understanding is more beneficial. A further limitation is that time and funding prevented translation so searches were limited to English language, although this is not always recommended (CRD, 2009).

The strengths of the synthesis include the novelty of topic area. To our knowledge no other research has attempted to explore distress within BD specifically, and little research exists generally on this topic within mental health. The use of thematic synthesis also enabled the synthesis of a variety of qualitative methodologies, across contextual groups to draw wider conclusions. The updated search and consistency of the additional study’s overall themes with the review provides further evidence of the factors which people report to be distressing within BD.

4.2 Conclusion

In conclusion, the evidence presented from this meta-synthesis suggests that there are certain factors which people with BD experience as distressing. There is scope, even with current available treatments, to target these factors reported to cause distress. Whilst the meta-synthesis focused on BD, many of the developed themes did not appear specific to this diagnosis. This is therefore possible further evidence of there being transdiagnostic processes involved. Given the novel area of this study, it provides a first step in understanding the processes involved in distress in BD.

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