Living the Life That You Want Following a Diagnosis of Bipolar Disorder

Home , Public hospital

Living the life that you want following

a diagnosis of Bipolar Disorder

A thesis submitted to The University of Manchester

for the degree of

Doctor of Clinical Psychology

in the Faculty of Biology, Medicine and Health

2018

Helen R Warwick

School of Health Sciences

Division of Psychology and Mental Health

Contents List of Tables ...... 5 List of Figures ...... 5 Word Count ...... 4 Abstract ...... 6 Declaration ...... 7 Copyright Statement ...... 8 Acknowledgements ...... 9 Paper 1: ‘What People Diagnosed with Bipolar Disorder Experience as Distressing’: A Meta- Synthesis of Qualitative Research ...... 11 Abstract ...... 12 1. Introduction ...... 13 2. Method ...... 15 2.1 Searches and screening ...... 16 2.1.1 Search strategy ...... 16 2.1.2 Inclusion and exclusion criteria ...... 17 2.1.3 Screening ...... 18 2.2 Data synthesis ...... 19 2.3 Appraisal of study quality ...... 21 3. Results ...... 21 3.1 Study and participant characteristics ...... 22 3.2 Study quality ...... 49 3.3 Qualitative evidence synthesis ...... 52 4. Discussion ...... 59 4.1 Strengths and limitations ...... 61 4.2 Conclusions ...... 62 References ...... 63 Paper 2: Living the Life You Want Following a Diagnosis of Bipolar Disorder: A Grounded Theory Approach ...... 70 Abstract ...... 71 1. Introduction ...... 72 1.1 Study aims ...... 76 2. Method ...... 76 2.1 Design ...... 76 2.2 Participants ...... 77 2.3 Procedure ...... 81 2.3.1 Diagnostic interview ...... 81 2.3.2 Sampling ...... 82 2.3.3 Qualitative interviews ...... 82

2.4 Analysis ...... 83 2.4.1 Model development and quality checks ...... 84 3. Results ...... 84 4. Discussion ...... 106 4.1 Findings in the context of current literature ...... 106 4.2 Further clinical implications ...... 109 4.3 Limitations and suggestions for future research ...... 110 4.4 Conclusions ...... 111 References ...... 112 Paper 3: A Critical and Reflective Review of Papers 1 and 2: A Systematic Review of Distress and an Empirical Study on Facilitating ‘Living the Life You Want’ Following a Diagnosis of Bipolar Disorder ...... 116 1. Introduction ...... 117 2. Paper 1: Systematic review ...... 117 2.1 Rationale ...... 117 2.2 Searching ...... 118 2.3 Screening ...... 120 2.4 Analysis ...... 120 2.5 Quality appraisals ...... 121 3. Paper 2: Empirical paper ...... 122 3.1 Rationale ...... 122 3.2 Developing the research ...... 123 3.3 Recruitment phase ...... 124 3.4 Conducting interviews ...... 126 3.5 Transcribing ...... 128 3.6 Coding ...... 129 4. Overall reflections, clinical implications and conclusions ...... 130 References ...... 133 Appendices ...... 136 Appendix 1: Author guidelines for the Journal of Affective disorders ...... 137 Appendix 2: Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement guidelines ...... 153 Appendix 3: The review protocol registered with PROSPERO International prospective register of systematic reviews ...... 155 Appendix 4: The CASP Qualitative Research Checklist for qualitative literature ...... 165 Appendix 5: A table summarising which included papers contained codes within each developed theme ...... 170 Appendix 6: A table with further examples of quotations for each theme and subtheme for the systematic review ...... 175

Appendix 7: The list of organisations where prior agreements were made to assist in advertising the study ...... 189 Appendix 8: Study advert ...... 190 Appendix 9: The terminology used by participants when asked what term or phrase would fit best for them in relation to the idea of recovery or being able to live the life that you want ...... 191 Appendix 10: Ethical approval letter ...... 192 Appendix 11: Participant consent forms ...... 194 Appendix 12: Participant information sheet ...... 197 Appendix 13: Initial screening form ...... 200 Appendix 14: Demographic questionnaire ...... 201 Appendix 15: Lone worker policy ...... 204 Appendix 16: Distress management protocol ...... 207 Appendix 17: Risk management protocol ...... 209 Appendix 18: Score sheet used within the diagnostic assessment interview ...... 211 Appendix 19: Interview schedule ...... 213 Appendix 20: Summary list of categories and subordinate categories identified ...... 215 Appendix 21: Table of categories and subordinate categories with examples of coded quotations ...... 216 Appendix 22: Table showing identified categories and which participant accounts these were coded from ...... 252

Word Count: 20127 (Excluding declarations, contents, thesis abstract, tables, figures, references and appendices)

List of Tables

Paper 1: Literature Review Table 1. The final search terms 17 Table 2. Summary of included study characteristics 24 Table 3. Study quality ratings using the CASP criteria 50

Paper 2: Empirical Study Table 1. Existing qualitative literature surrounding recovery and coping well in 74 BD Table 2. Participants’ demographic and clinical characteristics 80 Table 3. A sample of questions from the interview topic guide 83 Table 4: A summary of categories discussed by participants with example 86 quotations

List of Figures

Paper 1: Literature Review Figure 1. Study identification diagram 23 Figure 2. Model of themes reported to cause distress 52

Paper 2: Empirical Study Figure 1. Flowchart of participants’ interest through to participation in the study 78 Figure 2. The diagrammatic model 85

Abstract

This thesis consists of a systematic review and a research study which sought to explore the factors involved in leading to distress, and in facilitating recovery, following a diagnosis of bipolar disorder. It comprises three standalone papers. Both papers one and two have been prepared for submission in accordance with the relevant journal guidelines. These guidelines have been adhered to as much as possible, with some additional material presented and extended descriptions for the purpose of the thesis.

Paper one is a meta-synthesis of qualitative literature from studies in which people with a diagnosis of bipolar disorder discuss factors that they experience as distressing. Four electronic databases were systematically searched. Twenty-four studies were included within the review. Quality appraisals were conducted on each of the included papers to assist in providing context. The methodological approach of thematic synthesis was used to extract and analyse the data. Seven analytical themes to describe aspects that were experienced as distressing, emerged from the synthesis. Themes of stigma and fear of relapse appeared to crosscut themes of diagnosis, loss, uncertainty, threat and relationships. The review findings and limitations are discussed in relation to the existing literature.

Paper two is a qualitative empirical study in which the factors and processes involved with facilitating recovery following a previous diagnosis of bipolar disorder were explored. Twelve individuals from international locations were recruited and interviewed. A diagnostic assessment was used to confirm that participants had previously met the criteria for a diagnosis of bipolar disorder. A constructivist approach to grounded theory analysis highlighted ten categories from the data. These included support as a foundational factor for the recovery process. Other categories such as believing things can change and not giving up, as well as becoming the director of your own life, were identified. A diagrammatic model was produced to represent these categories and the suggested relationships between them. This theoretical model is discussed with example quotations. Findings supported and extended on previous literature, the clinical implications of which are discussed.

Paper three is not intended for publication and is an overall critical review of the research process. This paper discusses the rationales, and the strengths and limitations, of both papers. Discussion in regards to key decision points and the considered alternatives are also provided. The approaches to interviewing and the qualitative analysis across both studies are reviewed with consideration of researcher reflexivity. Paper three also includes personal reflections and implications of the research drawn from both papers.

Declaration

No portion of the work referred to in the thesis has been submitted in support of an application for another degree or qualification of this or any other university or other institute of learning.

I. The author of this thesis (including any appendices and/or schedules to this thesis) owns certain copyright or related rights in it (the “Copyright”) and s/he has given The University of Manchester certain rights to use such Copyright, including for administrative purposes. II. Copies of this thesis, either in full or in extracts and whether in hard or electronic copy, may be made only in accordance with the Copyright, Designs and Patents Act 1988 (as amended) and regulations issued under it or, where appropriate, in accordance with licensing agreements which the University has from time to time. This page must form part of any such copies made. III. The ownership of certain Copyright, patents, designs, trademarks and other intellectual property (the “Intellectual Property”) and any reproductions of copyright works in the thesis, for example graphs and tables (“Reproductions”), which may be described in this thesis, may not be owned by the author and may be owned by third parties. Such Intellectual Property and Reproductions cannot and must not be made available for use without the prior written permission of the owner(s) of the relevant Intellectual Property and/or Reproductions. IV. Further information on the conditions under which disclosure, publication and commercialisation of this thesis, the Copyright and any Intellectual Property and/or Reproductions described in it may take place is available in the University IP Policy (see http://documents.manchester.ac.uk/DocuInfo.aspx?DocID=24420), in any relevant Thesis restriction declarations deposited in the University Library, The University Library’s regulations (see http://www.library.manchester.ac.uk/about/regulations/) and in The University’s policy on Presentation of Theses.

Acknowledgements

Firstly, I would like to thank my research supervisors Dr Warren Mansell and Dr Sara Tai for their guidance, support and encouragement over the past few years. From you both, I have learnt a huge amount about the diagnosis of bipolar disorder and the process of qualitative research. I have also further developed my clinical skills and been encouraged to question the current status of existing psychological service provision through your supervision. Thank you.

To Jude Moss, my clinical tutor, thank you for supporting me throughout the course. Your patience, kindness and honesty has been invaluable in my progression.

I would like to express my sincere gratitude to those who expressed their interest in being involved in the research. For those that participated, I would like to thank you for your trust, time and openness in sharing your truly remarkable stories. I felt privileged in talking to you all, and touched at hearing your insights and experiences and wishes to use these to help others. Thank you also to all the individuals and organisations that helped with recruitment or supported advertising the study. I would also like to thank Rita Long, for her time role- playing interviews and offering her advice and guidance during the initial stages of the research study.

To my wonderful family and friends thank you all for your continued and unconditional support, understanding and positivity as I sought to aim for and now (almost!) complete this doctorate. Thank you especially to my parents for always encouraging me to strive towards my dreams, and for sending me reminders of your belief in my abilities. I also owe a huge thank you to Olly who has provided me with a foundation of strength and calm over this roller-coaster journey. I could not have done this without you all by my side.

I would like to dedicate this thesis to my cohort for providing me with companionship, humour and for being understanding in the emotional ride that we have all been on. I will never forget all those hours in the basement, and know that I have made friends for life. I am excited to see where our careers take us all and feel proud to have been through this journey with you.

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Paper 1: ‘What People Diagnosed with Bipolar Disorder Experience as Distressing’: A Meta-Synthesis of Qualitative Research

Paper 1 has been prepared for submission to the Journal of Affective Disorders in accordance with the guidelines for contributors (Appendix 1).

Word count (excluding abstract, tables, figures and references): 7145

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 explored.

Methods: A comprehensive literature search was conducted in four major bibliographic databases in August 2017. 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 for example cognitive behavioural therapy (CBT), for BD are recommended in The National Institute for Health 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 actually represent the experiences of people with a diagnosis of BD. It is uncertain, both in terms of what people diagnosed with BD experience as beneficial within psychological therapy, and what within BD is perceived to be distressing. Furthermore, many of the few existing research trials do not explore this so the degree of variation in the experiences of people with this diagnosis is unclear. According to the British Psychological Society (BPS), 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 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 how many people are actually sufficiently treated based on therapy interventions are largely unknown. A further recent meta-analysis demonstrated that current psychological interventions are not adequately 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 (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, however 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 which impacts upon everyday life and in which some modification is desired (Tarrier et al., 2007). For the purpose of this 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).

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 (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 (Marwaha and Steven, 2005; Megivern et

14 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 with 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 (Appendix 2, Moher et al., 2015). A search strategy and protocol were developed to guide the review. The review protocol was registered with the PROSPERO International prospective register of systematic reviews prior to its commencement (Appendix 3, 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 followed1. 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 screening

2.1.1 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 HW. These databases aimed to provide a sufficient overview of journals2. Searches were adapted as necessary across all four databases, maintaining similarity where possible. Results were limited to peer reviewed journals and human participants. Time and funding limitations prevented translation so searches were limited to English language, although this is not always recommended (CRD, 2009)3. The final search terms are shown in Table 1.

1 See critical review p118 on more details regarding the searches and the guidelines followed 2 See critical review p118 for further justification on database choice 3 See critical review p119 for further discussion on potential limitations of the search strategy

Table 1. Final search terms

Bipolar terms ‘bipolar disorder’ OR (N=2) ‘bipolar spectrum disorder’

AND

Qualitative research terms ‘qualitative’ OR ‘interpretative*’ OR ‘phenomen*’ (N=9) OR ‘Grounded theory* OR ‘interview*’ OR ‘focus group’ OR ‘narrative’ OR ‘lived experience*’ OR ‘ethnograph’

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). 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.

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-synthesis4. 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

4 See p120 within the critical review for more detail on the rationale

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 the ‘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 receipt5.

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 (see Appendix 4) 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. A randomly identified twenty percent of papers were also blindly assessed 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’ ratings6.

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.

5 See critical review p122 for further discussion

6 See critical review p122 for comments on inter-rater reliability for the quality assessments

21 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 included from a range of countries including the UK, USA, Sweden, Norway, Denmark, The Netherlands, Israel, New Zealand and Australia. Participants’ age ranged from 18 to 71 years. Three studies solely focused on female viewpoints, and all others contained a gender mix (217 female; 103 male overall). 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 appeared to vary across studies however different ways of reporting limited overall numbers to be calculated. 5 studies focused on one type of BD diagnosis, 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.

Records identified Records identified Records identified Records identified

through PsycINFO through Embase through MEDLINE through ASSIA database searching database searching database searching database searching (n=844) (n=2888) (n=1392) (n=77)

Identification Records identified (n=5201)

Records excluded (n=3615) Records after duplicates removed (n=3832) Reasons: Manually identified as duplicate (n=34) Irrelevant topic (n=3037) Quantitative study (n=338) No BD diagnosis (n=35) No first person accounts from people with BD (n=71) Screening Records screened by title & abstract Single case or case study design (n=3832) (n=53) Publication type (n=47)

Full-text articles assessed for Full-text articles excluded (n=195) eligibility (n=217) Reasons: Manually identified as a duplicate (n=1) No first person accounts from people with BD (n=43) First person accounts not related to distress Eligibility from BD (n=9) Publication type e.g. conference abstract Additional records (n=31) identified via: Not in a peer reviewed journal (n=1) Single case or case study design (n=3) Reference searches Data from BD group not analysed separately (n=74) (n=1 of 859 references) Organic basis for diagnosis (n=1) Citation searches Manually identified as non-English (n=1) (n=1 of 466 papers) Recognised and validated method of qualitative analysis not used (n=4) (Total n=2 of further Stated themes not related to distress or a source of distress (n=6) identified 1325 papers) Data not just collected via individual interviews (n=9) Study involved populations other than BD Eligible studies (n=4)

(n=22) Study focuses on a specific intervention/focus (n=8)

Included Studies included in qualitative synthesis (n=2)+(n=22)=24

Figure 1. Study identification diagram

23 Table 2. Summary of included study characteristics

Author(s), Title Year Research aims Participants (n) Diagnosis (n) Method of Main themes country Age (mean, SD, Medication analysis range) (n) Gender (Female n) Ethnicity (n) Socioeconomic status (n) Employment (n) Qualification level (n)

Other details

1 Pollack & Patients' 2001 To describe the Participants: 15 Diagnosis: Qualitative content 1.Coming to terms with Aponte. perceptions of their perceptions of Age: 35.3 (10.6), Bipolar analysis the diagnosis bipolar illness in a illness of 21-52yrs disorder type 2.The importance of USA public hospital patients Gender: Female 8 not reported personal metaphors setting hospitalized for Ethnicity: African 3.Dealing with the treatment of Americans 5 Medication: medical model their bipolar Hispanics 5 All disorder European Americans 5 Socioeconomic status: Not reported Employment: Employed within the past year 8 Qualification level: Not reported

Other: Includes patients currently hospitalized with mania (n=7) and depression (n= 2)

25 2 Jönsson, Persons living with 2008 To describe the Participants: 18 Diagnosis: Qualitative content 1. View of the illness: Wijk, bipolar disorder - meaning of Age: 31.5 (?), 18- Bipolar I analysis accepting the illness, Skärsäter, Their view of the living with 57yrs disorder 11 being insecure in & Danielson. illness and the bipolar disorder Gender: Female 9 Bipolar II oneself, striving for future based on Ethnicity: All disorder 7 understanding, and Sweden individuals’ Swedish Medication: managing the illness views of the Socioeconomic Not reported 2.View of the future: an illness and their status: Not uncertain future, a future reported hopeful future Employment: Full-time job 3 Part-time job 3 Sick 6 Disability pension 3 Student 3 Qualification level: Elementary school 1 Upper Secondary school 12 College/University 5

Other: All patients being treated at 6 outpatient services

3 Venkataraman Parenting among 2008 To understand Participants: 10 Diagnosis: Grounded theory Strengths in parenting: & mothers with parenting Age: ? (?), 21- Bipolar I methodology 1.Importance of Ackerson. bipolar disorder: strengths, 49yrs disorder 8 children Strengths, challenges, and Gender: Female Bipolar II 2. Positive personality USA challenges, and service needs 10 disorder 2 traits service needs of mothers with Ethnicity: All Medication: 3. Learning from bipolar disorder described as Not reported experiences with own from their own White parents perspectives Socioeconomic Other: status: Not At least 4 had Challenges: reported a psychiatric 1. Depression affecting Employment: comorbidity parenting Employed 8 2. Swings in parenting Unemployed 2 3. Problems in Qualification disciplining level: All had 4. Stress due to completed high children school or its equivalent Service Needs: 1. Help with discipline Other: 2. Support groups All mothers with 6 3. Crisis services single parents 4. Help handling problem behaviour in children 5. Other service needs

4 Inder, "I actually don't 2008 To explore the Participants: 15 Diagnosis: Thematic analysis 1.Effects on Crowe, know who I am": impact of Age: 26.4 (6.2), Bipolar I Relationships Moor, The impact of having bipolar ? yrs disorder 15 2. Other’s definitions of Luty, bipolar disorder on disorder on the Gender: Medication: self Carter & the development of development of Female12 Not reported 3. Disrupting Joyce. self a sense of self Ethnicity: Not 4. Problems in the and identity reported . development of a New Zealand Socioeconomic sense of self. status: Not reported Employment: Not reported Qualification level: Not reported

28 5 Wilson & Parenting with a 2009 To study ways Participants: 5 Diagnosis: Critical discourse Monitoring emotional Crowe. diagnosis bipolar in which bipolar Age: Not reported Bipolar analysis regulation disorder disorder is Gender: Female 4 disorder type New Zealand constructed in Ethnicity: Not not reported the DSM-IV and reported Medication: popular texts, Socioeconomic Not reported and how status: Not parents who reported have been Employment: Not diagnosed as reported having a bipolar Qualification disorder level: Not construct their reported role as parent

29 6 Rusner, Extra dimensions 2009 To explore the Participants: 10 Diagnosis: Reflective lifeworld 1.The essential Carlsson, in all aspects of existential Age: ? (?), 30- Bipolar perspective based meaning of the Brunt & life-the meaning of meaning of life 61yrs disorder type on phenomenon Nystrom. life with bipolar with BD Gender: Female 6 not reported phenomenological 2. A specific intensity disorder Ethnicity: Not Medication: philosophy 3. A struggle to Sweden reported Not reported understand Socioeconomic 4. An illness that is status: Not intertwined with one’s reported whole being’ Employment: Not reported Qualification level: Not reported

30 7 Mansell, The process of 2010 To characterize Participants: 13 Diagnosis: Interpretative Ambivalent Powell, recovery from the personal Age: 50.54 (8.35), Bipolar I phenomenological approaches: Pedley, bipolar I disorder: A experience of 33-61yrs disorder 13 analysis 1. Avoidance of mania Thomas & qualitative analysis recovery in Gender: Female 9 Medication: 2. Taking medication Jones. of personal people with a Ethnicity: Not Yes 8 3. Prior illness versus accounts in relation diagnosis of reported current wellness UK to an integrative bipolar disorder Socioeconomic 4. Sense of identity cognitive model status: Not following diagnosis reported Employment: Helpful approaches: Employed 9 1. Understanding Retired 1 2. Life-style Unemployed (n=3) fundamentals Qualification 3. Social support and level: GCSE 4 companionship A-levels 3 4.Social change Degree 3 Postgrad 3

Other: All remained free from relapse and without hospitalization for at least 2 years

8 Inder, "I really don't know 2010 To explore Participants: 15 Diagnosis: Thematic analysis 1.Experiencing the Crowe, whether it is still participants’ Age: ? (?), 17- Mixed sample symptoms Joyce, there": Ambivalent experiences of 35yrs of Bipolar I 2.Making sense of the Moor, acceptance of a bipolar disorder Gender: Female disorder, symptoms Carter & diagnosis of bipolar and examine 12 Bipolar II 3.Experiencing Luty disorder the process that Ethnicity: Not disorder and treatment participants reported Bipolar NOS New Zealand went through in Socioeconomic Medication: obtaining and status: Not Not reported making sense reported of their Employment: Not diagnosis, and reported the factors Qualification influencing level: Not acceptance of reported their diagnosis

9 Wang & Bipolar disorder 2010 To explore the Participants: 9 Diagnosis: Inductive approach 1.The importance of Henning. and medical views of Age: 41 (?), 20- Bipolar drug adherence adherence: A Chinese 56yrs disorder type 2.Attitudes towards New Zealand Chinese immigrants Gender: Female 5 not reported medications perspective living with BD Ethnicity: Medication: 3.Relationships with with respect to Chinese All reported doctor their levels of immigrants 9 taking 4.Stigma related to medical Socioeconomic medication medication adherence status: Not within the past reported 3 months Employment: Not reported Qualification level: Not reported

10 Wright, 'It's a double edged 2012 To gather data Participants: 25 Diagnosis: Interpretative 1.Exercise regulation Armstrong, sword': A on experiences Age: 51 (?), 24- Bipolar I Phenomenological 2.Exercise as a double Taylor & qualitative analysis of the 71yrs disorder 21 Analysis edged sword Dean. of the experiences relationship Gender: Female Bipolar II 3.Exercise bringing of exercise between 15 disorder 3, structure to chaos UK amongst people exercise and Ethnicity: Not Other Bipolar with bipolar Bipolar Disorder reported Disorders 1 disorder from people Socioeconomic Medication: with personal status: Not Not reported experience. To reported determine the Employment: Not aspects of this reported relationship that Qualification are pertinent to level: Not Bipolar Disorder reported

34 11 Veseth, Toward caring for 2012 To investigate Participants: 13 Diagnosis: Hermeneutical- 1.Handling Binder, oneself in a life of and explore the Age: 47 (?), 27- Mixed sample phenomenological ambivalence about Borg & intense ups and lived 65yrs of bipolar I approach letting go of manic Davidson. downs: A reflexive- experiences of Gender: Female 6 disorder and states collaborative improvement in Ethnicity: Not bipolar II 2. Finding something to Norway exploration of bipolar disorder: reported disorder hang on to when the recovery in bipolar What do Socioeconomic Medication: world is spinning disorder individuals with status: Not Not reported around bipolar reported 3. Becoming aware of disorders do to Employment: Not signals from self and promote their reported others own recovery, Qualification 4.Finding ways of and what level: Not caring for oneself challenges do reported they meet?

12 Crowe, Feeling out of 2012 To investigate Participants: 21 Diagnosis: Inductive approach Feeling out of control: Inder, control: A the impact of Age: 50.7 (?), 22- Mixed sample with thematic 1. Feeling Carlyle, qualitative analysis bipolar disorder 71yrs of bipolar I analysis overwhelmed Wilson, of the impact of on the lives of Gender: Female disorder and 2. A loss of autonomy Whitehead, bipolar disorder people 16 bipolar II 3. Feeling flawed Panckhurst, diagnosed with Ethnicity: Not disorder O'brien & this disorder reported Medication: Joyce. Socioeconomic Not reported status: Not New Zealand reported Employment: Not reported Qualification level: Not reported

Other: All were receiving care from community mental health services

13 Fletcher, A qualitative 2013 To explore Participants: 13 Diagnosis: Interpretative 1.Hypomania ascent Parker & investigation of cognitive Age: 40.5 (11.9), Bipolar II phenomenological beliefs Manicavasagar. hypomania and processes and ?yrs disorder 13 analysis 2.Hypomania descent depression in behaviours Gender: Female 7 Medication: beliefs Australia bipolar II disorder mediating Ethnicity: Not All 3.Beliefs about hypomania and reported depression depression in Socioeconomic 4.The impact of participants status: Not chronicity diagnosed with reported BP II disorder Employment: Not reported Qualification level: Not reported

14 Russell & High and happy? 2013 To approach Participants: 4 Diagnosis: Interpretative 1.What is ‘happiness’? Moss. Exploring the the experience Age: ? (?), late Bipolar phenomenological Is it being ‘high’? experience of of ‘happiness’ 30s-early 60s yrs disorder type analysis 2.Rejecting popular UK positive states of and ‘mania’ for Gender: Female 3 not reported ideas of ‘happiness’ mind in people who people who Ethnicity: White- Medication: and welcoming the have been given a have been British 3 Not reported enjoyment and diagnosis of bipolar given a Unknown 1 excitement of ‘being disorder diagnosis of Socioeconomic high’ ‘bipolar status: Not 3.The self-acceptance disorder’ and to reported and peacefulness of explore how Employment: ‘happiness’ in contrast they might Employed 1 to the disruption and differentiate or Self-employed 2 chaos of ‘being high’ associate Retired 1 4.The importance of between these Qualification community and experiences level: Not connection in reported ‘happiness’ in contrast to the disruption of social relationships when ‘feeling high’

15 Borg, The role of work in 2013 To: 1) Participants: 13 Diagnosis: Thematic and 1. Many types of work: Veseth, recovery from understand the Age: 47 (?), 27- Bipolar phenomenological finding meaning and a Binder & bipolar disorders. role of work in 65yrs disorder type analysis, with focus Topor. recovery from Gender: Female 7 not reported hermeneutic 2. Helpful roles and bipolar Ethnicity: Not Medication: phenomenology contexts: to be much Norway disorders, and reported Not reported and reflexive more than a person 2) understand Socioeconomic methodology with an illness how people with status: Not 3. Making work such disorders reported beyond possible: the role of deal with work- being varied supportive relationships related Employment: and supportive challenges Disability grant 7 medications Employed full-time 4. The costs of working 3 too much: finding a Employed part- meaningful and healthy time 3 balance Qualification level: Not reported beyond being varied

16 Tjoflat & I am Me! 2013 To gain insight Participants: 6 Diagnosis: Interpretative 1.Balancing bipolar Ramvi. Experiencing into acquiring Age: 41 (?), 31- Bipolar phenomenological disorder and parenting parenting while an 50yrs disorder type analysis 2.Need for support Norway dealing with one's understanding Gender: Female 5 not reported versus perceiving own bipolar of parenting Ethnicity: All Medication: stigma disorder while dealing Norwegian Not reported 3.Dependence on their with one’s own Socioeconomic children bipolar disorder status: Not 4. Change and growth reported Employment: Not reported Qualification level: Not reported

Other: 5 mothers and 1 father

17 Fernandez, Renegotiating 2014 To explore the Participants: 10 Diagnosis: Constant 1.Identity bound by the Breen & identities: experiences of Age: 50 (15.33), Bipolar I comparative diagnostic label Simpson. Experiences of loss loss, coping, 29-68yrs disorder 7 method 2.Multidimensional and recovery for and recovery in Gender: Female Bipolar II effects of the bipolar Australia women with bipolar a community 10 disorder 2 disorder identity disorder. sample of Ethnicity: Not Cyclothymia 1 3. Strategies for people living reported Medication: renegotiating identity with BD Socioeconomic Not reported status: Not reported Employment: Retired 3 Unemployed 3 Employed full time 1 Employed part- time 3 Qualification level: Not reported

41 18 Mortensen, Bipolar patients' 2015 To produce in- Participants: 6 Diagnosis: Discourse 1.Experiences of being Vinberg, quality of life in depth Age: ? (?), 22- Bipolar theoretical in mixed states Mortensen, mixed states: A knowledge 41yrs disorder type approach 2.Quality of life and Jorgensen, preliminary about bipolar Gender: Female 3 not reported functioning Eberhard. qualitative study patients’ quality Ethnicity: Not Medication: of life and reported Not reported Impact of Mixed States Denmark functioning Socioeconomic on: related to mixed status: Not 3. Identity and Self- states reported Esteem Employment: 4. Comorbidity and Employed and/or Medication Side Effects studying 3 5. Family Life Disability 6. Love life pensioner 1 7. Working Capability On sick leave 2 Qualification level: Not reported

Other: All remitted from bipolar disorder who had experienced mixed states

19 Cappleman, Managing bipolar 2015 To explore the Participants: 10 Diagnosis: Constructivist 1. Deciding whether to Smith & moods without processes by Age: 36 (?), 29- Bipolar I approach to use medication Lobban. medication: A which people 50yrs disorder 5 Grounded Theory 2. Searching for qualitative manage bipolar Gender: Female 5 Bipolar II alternatives to UK investigation moods without Ethnicity: Not disorder 2 medication medication reported Bipolar NOS 1 3. Trying to keep mood Socioeconomic Manic at a preferred level status: Not depression 2 4. Channelling energy reported Medication: into something positive Employment: Not reported 5. Trying to bring about Employed 4 a more desired state Self-employed 2 6. Barriers to Unemployed 3 implementing strategies Student 1 7. Trying to evaluate Qualification how I experience things level: Not 8. Evaluating the reported effects of non- medication strategies 9. Discontinuing daily tasks

43 20 Van den Identifying and 2015 To describe and Participants: 16 Diagnosis: Phenomenological 1.Acknowledgment of Heuvel, describing patients' categorise the Age: 44.4 (16.02), Bipolar I content analysis having BD Goossens, learning subjective 23-66yrs disorder 7 2.Processing the Terlouw, experiences learning Gender: Female 8 Bipolar II information load Van Achterberg towards self- experiences of Ethnicity: Not disorder 9 3.Illness management & management of service users in reported Medication: 4.Reflecting on living Schoonhoven. bipolar disorders: A self-managing Socioeconomic Not reported with BD phenomenological BD status: Not 5.Self-management of The study reported BD Netherlands Employment: Not reported Qualification level: Not reported

21 Owen, A qualitative 2015 To identify Participants: 20 Diagnosis: Thematic analysis 1. Social protective Gooding, investigation into which social Age: 45.6 (?), 26- Bipolar I factors Dempsey & the relationships factors people 50yrs disorder 15 2. Social triggers and Jones. between social who experience Gender: Female Bipolar II worsening factors factors and suicidal bipolar disorder 13 disorder 5 UK thoughts and acts perceived as Ethnicity: Not Medication: experienced by having reported Not reported people with a triggered, Socioeconomic bipolar disorder worsened and status: Not diagnosis protected reported against suicidal Employment: Not thoughts, reported feelings and Qualification behaviours level: Not reported

45 22 Granek, Living with bipolar 2016 To uncover Participants: 11 Diagnosis: Grounded theory From patients Danan, disorder: the information Age: 50 (?), 30- Bipolar I with spouse perspective: Bersudsky & impact on patients, relating 58yrs disorder 11 interviews coded 1.Emptional Impact on Osher. spouses, and their specifically to Gender: Female 7 Medication: separately from spouse marital relationship the impact of Ethnicity: Not Not reported patient interviews 2. Emotional on patient Israel bipolar disorder reported in order to develop 3.Struggling on patients and Socioeconomic two coding developmentally spouses status: Not schemes individually, and reported on the marital Employment: relationship Employed 7, from the Unemployed 1 perspectives of Retired 2 both patients Qualification and spouses level: Not reported

Other: All married, spouse’s interviewed separately

46 23 Dolman, Women with 2016 To explore the Participants: 21 Diagnosis: Thematic analysis 1.The centrality of Jones & bipolar disorder factors that Age: 35.5 (6.11), Bipolar I motherhood Howard. and pregnancy: influence the 21-49yrs disorder 21 2.Social and economic Factors influencing decision- Gender: Female Medication: contextual factors UK their decision- making of 21 Not reported 3. Stigma making regarding women with Ethnicity: White 4. Fear treatment bipolar disorder British 10 regarding White European 3 pregnancy and Black or mixed childbirth race 5 Asian 3 Socioeconomic status: Not reported Employment: Employed or doing voluntary work 12 Students 2 Full-time mothers/ unemployed 4 Qualification level: Not reported

47 24 Blixen, Coping strategies 2016 To address the Participants: 21 Diagnosis: Content analysis 2 major domains of Levin, used by poorly gap between Age: 47.29 (11.6), Bipolar I coping strategies used Cassidy, adherent patients coping theory ?yrs disorder 17 to self-manage BD: Perzynski & for self-managing and the clinical Gender: Bipolar II 1) Problem focused Sajatovic. bipolar disorder use of coping Female15 disorder 3 (altering eating habits, strategies used Ethnicity: African- Other 1 managing mood- USA to self-manage American 13 Medication: stabilizing medications, BD Caucasian 5 not reported keeping psychiatric Hispanic 1 appointments, seeking Other 3 knowledge, self- Socioeconomic monitoring, and status: Not socializing reported 2) Emotion focused Employment: (distracting activities, Disabled or denial, isolation, unemployed 18 modifying/avoiding Qualification helping others, and level: All had a seeking social support) mean level of education = 12.1 yrs

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 what influences and biases they may have brought to the study or relationship with the participants. Ethical issues appeared to have been adequately addressed in 18 studies. All studies gave an appropriate statement of findings, although the data analysis appeared sufficient in only 22. All studies appeared to make valuable contributions to research7.

7 See critical review p121 for further discussion regarding the quality appraisal process

Table 3. Study quality ratings using the CASP criteria

Quality question

Study 1 2 3 4 5 6 7 8 9 10

Pollack & Aponte, 2001 Yes Yes Yes Yes Yes Can't tell Yes Can't tell Yes Yes

Jönsson et al., 2008 Yes Yes Yes Yes Yes Can't tell Yes Yes Yes Yes

Venkararaman & Ackerson, 2008 Yes Yes Yes Yes Can't tell Can't tell Can't tell Yes Yes Yes

Inder et al., 2008 Yes Yes Yes Yes Yes Can't tell Yes Yes Yes Yes

Wilson & Crowe, 2008 Yes Yes Yes Can't tell Yes Can't tell Yes Yes Yes Yes

Rusner et al., 2009 Yes Yes Yes Yes Yes Can't tell Yes Yes Yes Yes

Mansell et al., 2010 Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes

Inder et al., 2010 Yes Yes Yes Yes Yes Can't tell Can't tell Yes Yes Yes

Wang & Henning, 2010 Yes Yes Yes Yes Yes Can't tell Can't tell Yes Yes Yes

Wright et al., 2012 Yes Yes Yes Yes Yes Can't tell Yes Yes Yes Yes

Veseth et al., 2012 Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes

Crowe et al., 2012 Yes Yes Yes No Yes Can't tell Yes Yes Yes Yes

Fletcher et al., 2013 Yes Yes Yes Yes Yes Can't tell Can't tell Can't tell Yes Yes

Russell & Moss, 2013 Yes Yes Yes Yes Yes Yes Can't tell Yes Yes Yes

Borg et al., 2013 Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes

Tjoflat & Ramvi., 2013 Yes Yes Yes Yes Yes Can't tell Yes Yes Yes Yes

Fernandez et al., 2014 Yes Yes Yes Yes Yes Can't tell Yes Yes Yes Yes

Mortensen et al., 2015 Yes Yes Yes Yes Yes Yes Can't tell Yes Yes Yes

Cappleman et al., 2015 Yes Yes Yes Yes Yes Can't tell Yes Yes Yes Yes

Van den Heuvel et al., 2015 Yes Yes Yes Can't tell Yes No Yes Yes Yes Yes

Owen et al., 2015 Yes Yes Yes Yes Yes Can't tell Yes Yes Yes Yes

Granek et al., 2015 Yes Yes Yes Yes Yes Can't tell Yes Yes Yes Yes

Dolman et al., 2016 Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes

Blixen et al., 2016 Yes Yes Yes Yes Yes Can't tell Yes Yes Yes Yes

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?

51 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, which appeared to be crosscutting across all other themes were identified as 1) stigma and 2) fear of relapse. See Appendix 5 for a table highlighting which papers contained codes for each developed theme. Appendix 6 contains further examples of quotations under each theme, and subtheme8. 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).

Figure 2. Model of themes reported to cause distress

8 See the critical review p130 for consideration of the researchers’ influence on interpreting the data and how this was managed 3.3.1 Themes

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 being given the 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).

53 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).

2. Loss

The largest theme consisted of an area of distress described in all the studies; 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 […]

54 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. Uncertainty

The theme of uncertainty was coded as a source of reported distress 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

55 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).

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 phrase.

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).

56 5. Relationships

The fifth theme of distress was 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 was felt through 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).

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

57 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).

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).

58 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 that matched our definition of distress was extracted and coded within the main synthesis. The review therefore offers a first attempt at understanding what actually is experienced as distressing within 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 experiences they find distressing. 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, at least currently, to work towards desired career goals, or this leading to challenges around self-identity, may cause to distress. This loss, alongside uncertainty

59 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, perceived loss of control itself or over each of these factors, 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 to cause them distress 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 factors that are considered to be distressing are 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

60 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.

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

61 synthesis also enabled the synthesis of a variety of qualitative methodologies, across contextual groups to draw wider conclusions 9.

4.2 Conclusions

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.

9 For further discussion of limitations of the search strategy, analysis and overall synthesis, see paper 3

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Paper 2: Living the Life You Want Following a Diagnosis of Bipolar Disorder: A Grounded Theory Approach

Paper 2 has been prepared for submission to the Journal of Affective disorders in accordance with the guidelines for contributors (Appendix 1). The word count of the journal was generally adhered to, however some additional explanations and methodological details have been added for the purposes of the thesis submission (the word count remains within university guidelines).

Word count (excluding abstract, tables, figures and references): 6233

Abstract word count: 250

Abstract

Background: Bipolar disorder (BD) is considered a severe and lifelong mental health diagnosis. However, there is growing evidence of people defying the odds and recovering. Processes underlying recovery remain poorly understood. The study aimed to explore these recovery processes and extend on the length of recovery defined within previous research.

Methods: Twelve people previously diagnosed with BD who had not experienced an episode of depression and/or mania for four or more years, were interviewed. Standardised diagnostic interviews (SCID-RV) confirmed past diagnosis and recovery time. Personal accounts of recovery were analysed using grounded theory methodology to facilitate greater depth in our understanding.

Results: The analysis revealed ten overarching categories of what participants reported to be important in their recovery: support; recognition of the problem; believing that things can change and not giving up; instinctive curiosity; medication; psychological therapy; becoming the director of your own life; changing how I think; accepting who I am and how I feel; and looking after me. A model based on grounded theory methodology was developed to represent how categories were related.

Limitations: Future research should aim to explore the views of those who have distanced themselves from the label of BD and investigate potential transdiagnostic recovery processes.

Conclusions: The ability to function well and live the life that you want following a diagnosis of BD is achievable. The main clinical relevance of the research is that people do experience long-term recovery achieved through self-determined pathways. This challenges current diagnostic perspectives and societal messages of lifelong conditions.

Keywords: Bipolar disorder, recovery, qualitative research, self-management

71 1. Introduction

“I had lost all control and the world had become

impenetrably confusing” (S.A., 2018).

Following experiences of extreme high and low moods, how do people go on to facilitate being able to live the life they want? The worldwide lifetime prevalence of bipolar I disorder is 1.06% and 1.57% for bipolar II disorder (Clemente et al., 2015). Functional impairments are high and the emotional impact extends beyond the individual to family members (Granek et al., 2016). The diagnosis itself is based on historical information and thus considered a lifelong condition (Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5): American Psychiatric Association (APA), 2013). This provides an inherent message to those in receipt of the diagnosis that they will never recover. Yet, there is growing evidence that some people experience many years between episodes of mania and/or depression (e.g. Pallaskorpi et al., 2015) or no longer meet criteria at all. These people report good functioning and the ability to ‘live the life they want’, indicative of recovery. Increasingly, people are writing publicly about their experiences of overcoming bipolar disorder (BD), even to the extent of no longer requiring medication (e.g. Miller, 2009).

The construct of recovery itself can be traced back to the 1970’s (Anthony, 1993), although the term’s precise meaning is unclear. Within the literature, recovery has been defined by: no longer requiring treatment, regaining control of ones’ life or being able to achieve ones’ goals (Cooke et al., 2010). Service-users themselves describe recovery in different ways (Russell and Browne, 2005). The recovery process and strategies used to promote recovery are an ‘on-going journey that is unique to that individual’ (Cooke et al., 2010). For some, functioning well and no longer using medication is an indicator of recovery (Mansell et al., 2010). For others, self-acceptance and redefining the sense of self is required (Cooke et al., 2010). According to the British Psychological Society (BPS), the prominent methodology of randomised controlled trials actively ignores this individual variation and the direct personal experiences of service-users (Cooke et al., 2010).

For other mental health difficulties, such as psychosis, recovery processes have been explored. Self-acceptance, social support, symptom management, and hope have been associated with recovery (Davidson, 2003). Suggestions have been made regarding other factors important for recovery from BD. These include understanding early warning signs and having a plan in place to manage them (Cooke et al., 2010;

72 Russell and Browne, 2005). Developing positive beliefs about mood swings also correlates with better outcomes (Dodd et al., 2017). It is plausible that underlying transdiagnostic mechanisms exist, such as ‘facing the problem’ to overcome it (Higginson and Mansell, 2008). However, there is uncertainty as to which strategies are most effective in facilitating recovery (Cooke et al., 2010). Consequently, little is known about what enables certain people to defy the odds and recover beyond ‘managing symptoms,’ as suggested by Russell and Browne (2005).

Due to the novelty of this area, qualitative studies within BD (see Table 1) have rarely specified the included population’s extent of recovery. Indeed the criteria of recovery is often not quantified beyond being able to live independently (Young and Ensing, 1999). To our knowledge, only two studies have explored beyond this. Russell and Browne (2005) and Mansell et al. (2010) examined recovery with people who reported to have remained episode free for at least two years. No study to date has looked specifically at those who have experienced a more lasting recovery (i.e. beyond two years post last episode). Furthermore, the lack of diagnostic interviews to determine if participants previously met clinical symptom thresholds has been a limitation within the existing literature (e.g. Young and Ensing, 1999; Russell and Browne, 2005; Veseth et al., 2012).

73 Table 1. Existing qualitative literature surrounding recovery and coping well in BD

Study Diagnostic Length of Sample Research Method and interview recovery aims Analysis used criteria

Young and No None Mixed a) To explore Individual Ensing psychiatric the meaning of interviews or (1999) diagnoses the recovery focus group process from (N=18) the perspective of service- Grounded theory users.

b) To identify common underlying factors within the recovery process across severe mental health disorders.

Chapman No None Bipolar I or II To explore how Interviews (2002) disorder challenges to (N=12) identity are dealt with. Grounded theory

Russell and No 2 years Bipolar I or II a) To explore Written Browne disorder how people questionnaire or (2005) (N=100) were able to interview stay well and avoid experiencing Thematic relapse. analysis b) To explore meaning of recovery and personal environmental and social roles.

74 Michalak et No None Bipolar I or II To explore the Interviews al. disorder impact of BD (N=35) upon quality of (2006) life. Also included Thematic caregivers analysis and health professionals

Mansell et Yes 2 years Bipolar I To explore the Interviews al. disorder possible (N=13) mechanisms of (2010) recovery within Interpretative personal phenomeno- experiences. logical Analysis

Todd et al. Yes None Bipolar I or II a) To explore Focus groups disorder what recovery (2012) (N=12) means to individuals. Thematic b) To explore analysis how self- management interventions may best assist.

Veseth et No None Bipolar I or II To investigate Interviews al. disorder and explore the (N=13) lived (2012) experiences of Hermeneutical improvement in phenomeno- bipolar logical approach disorder.

Fernandez Yes None Bipolar I To explore Interviews et al. disorder, individual’s bipolar II experiences of (2014) disorder, or loss, coping, Thematic cyclothymia and recovery analysis (N=10) alongside impact on All female. identity.

75 1.1 Study aims

The need for a more thorough understanding of how people diagnosed with BD achieve recovery is essential. This study aimed to explore what factors or processes are involved, from the perspectives of those with personal experience. The notion of ‘being able to live the life you want’ defined recovery in this study. This aimed to capture a high level of attained functioning whilst being partially self-defined by participants. It also enabled those taking medication or involved in services to not be excluded. The criteria of four years or more since a previous episode aimed to capture people who have achieved a longer recovery period than those previously studied (e.g. Fernandez et al., 2014; Veseth et al., 2012). Including any previous BD diagnosis extended the viewpoints captured beyond a focus on bipolar I (Mansell et al., 2010)10.

Insight into potential mechanisms of recovery in BD has arisen from previous qualitative explorations (e.g Mansell et al., 2010). However, Dodd et al. (2017) concluded that further work is required for advancements to be made in developing a psychological model of BD recovery. The use of grounded theory (GT) methodology to analyse interviews in the current study was intended to facilitate a deeper understanding and ascertain important factors within the recovery process. GT analysis also reduces limitations from using predefined constructs, and allows findings to be developed directly from the data. Greater understanding will aim to improve current modestly effective psychological models and treatments (Jauhar et al., 2016). Increasing understanding surrounding the complex process of recovery within BD will endeavour to challenge current attitudes and assumptions on the longevity of this diagnosis.

2. Method

2.1 Design

A GT approach11 was used to explore and develop an explanation of processes involved in recovery following a BD diagnosis. A constructivist (Charmaz, 2006) epistemological stance was undertaken, in line with the assumption that people create

10 See critical review p123 for further discussions around the project design 11 See critical review p123 for further details on the methodological rationale

their own understanding of reality and apply these meanings to their experiences. This differs from attempts to seek a sole objective truth, as in positivist GT (e.g. Glaser and Strauss, 1967). The constructivist approach emphasises why people construct meaning and actions in relation to specific phenomenon. This makes it suitable for exploring specific processes and factors involved in recovery. An acknowledgement that any theoretical ideas developed from the data is an interpretation made by the researchers is also reflected within a constructivist stance. This is critical when exploring an understudied area.

2.2 Participants

Participants were recruited12 internationally through relevant mental health and BD organisations including charities and support groups (see Appendix 7), via their centres, websites, social media and mailing lists (see Appendix 8 for advert). Local advertising occurred via the University of Manchester staff and postgraduate mailing list, research recruitment website and twitter page. Direct contact was also made with people writing publicly about their BD recovery.

The inclusion criteria were that participants must have been diagnosed with BD and not have experienced any episodes of depression and/or mania, which significantly impacted on their life, for a minimum of four years. They were required to define themselves as ‘living the life they want.’ Exclusion criteria included: currently receiving psychological therapy for a comorbid diagnosis; evidence of separate psychotic experiences; a known neurological or organic basis for their presentation; a diagnosis of a moderate to severe learning disability; or non-English speaking.

These criteria aimed to ensure that participants were functionally able to undertake the study and confounding factors were limited. A generalisable representation of the sample population was aimed for. Initial interest was received from 35 people over 5 months from across recruitment avenues.

12 See critical review p124 for further discussion regarding the recruitment phase

Study advertised via University and agreed organisational mailing lists, websites, social media and support groups.

Direct contact was made with public writers.

Identification People contacted team regarding study interest Not interested (n= 27) in participation Responded to direct contact regarding study (n=1) (n=8)

Did not hear back (n=8)

Declined participation (n=1) Sent further information & initial Non-BD (n=2) screening forms for completion No formal BD diagnosis (n=34) (n=1)

Screening Recovery period < 4 years (n=1) Expressed interest or initial forms completed post- ending recruitment due to theoretical sufficiency (n=5)

Conducted DSM-V SCID assessment In current episode (n=2) (n=16) Episode within past 4 years (n=1) Eligibility Episode experienced post SCID prior to main interview (n=1)

Conducted main interview

(n=12) ed

Includ Included in overall analysis (N=12)

Figure 1. Flowchart of participants’ interest through to participation in the study (based on Moher et al., The PRISMA Group, 2009).

Twelve participants (6 female) aged from 32 to 63 years were recruited (see Table 2 for full demographic details). Diagnostic interviews (see 2.3.1) confirmed participants met criteria for bipolar I disorder (n=9), bipolar II disorder (n=2) and for GMC/substance causing bipolar and related symptoms (n=1), based on historical experiences. Four additional people did not participate beyond SCID-RV interviews as they did not meet inclusion criteria. Five expressed interest towards the end of recruitment and due to theoretical sampling priorities were not invited to participate.

All 12 participants self-defined as ‘living the life they want’, with mixed preferences for terminology used to describe recovery (see Appendix 9). The mean length of time since their last episode was 9.3 years (SD=4.4), the longest being 17 years. All participants were currently employed including three self-employed. Four had completed A-levels or equivalent, four were graduates and four were postgraduates. Whilst sufficient variability to allow for generalisation was anticipated, the sample was considered suitably homogenous to explore BD recovery processes.

Table 2. Participants’ demographic and clinical characteristics

ID Gender Age Currently Time since Hospital Number of Number of Number of Length taking diagnosis admissions depression manic hypomanic since last medication (years; episodes episodes* episoes* episode months) (all >1)* (years; months)

1 M 61 Yes 17; 4 0 2 0 1 17 4 F 35 Yes 9; 7 0 7 2 ‘several’ 5; 5 8 M 58 Yes 25 0 ‘70-80’ 0 ‘70-80’ 5 9 M 56 Yes 17; 8 1 ‘8+’ 2 1 7 11 F 33 Yes 4; 8 0 ‘10 to 15’ 1 ‘10 to 15’ 4; 6 12 M 56 Yes 17; 5 4 4 1 0 16 14 F 63 No 14 0 3 ‘countless’ ‘countless’ 14 16 M 49 Yes 5; 7 1 2 1 ‘several’ 5; 5 20 F 42 Yes 24 1 ‘about 10’ 1 ‘several’ 9 29 F 60 No 11 3 ‘several’ 3 0 7; 4 33 M 32 Yes 15; 9 5 5 5 0 12 34 F 50 No 27; 2 8 to 10 ‘couldn’t count’ 1 ‘maybe a few’ 9

2.3 Procedure

Manchester University Research Ethics Committee (UREC) granted ethical approval (Ref: 2017-0417-2019, Appendix 10).

Participants provided written informed consent (Appendix 11) prior to taking part after reading the information sheet (Appendix 12). Screening and demographic forms (Appendices 13 and 14) gained information about the participant’s history and length of recovery period.

Following initial eligibility, participants were invited to undertake a diagnostic interview. If participants remained eligible and consented to continue, the main interview was arranged. Interviews lasted between 55 and 100 minutes with an average of approximately 70 minutes. Breaks were offered to participants. Interviews were conducted face to face at the University of Manchester or over the telephone or using video calling software. Where relevant, local participant travel costs were reimbursed. University lone worker policies, alongside distress and risk management protocols, were followed as necessary (Appendices 15, 16 and 17). All interviews were conducted by HW and audio recorded with participant consent. The interviewing researcher transcribed the main interviews verbatim.

2.3.1 Diagnostic interview

Module A of the SCID-RV alongside the ‘DSM-5 self-rated level 1 cross-cutting symptom measure-adult’ and the psychotic screening module (First et al., 2015) determined study eligibility. The SCID-RV refers to the Structured Clinical Interview for DSM-5, a routinely used semi-structured assessment.13 The researcher was trained using videos and reflective role-plays. The diagnostic and main interviews were piloted with a service-user researcher.14

13 See Appendix 18 for the designed score sheet for Module A and the psychotic screening module 14 See critical review p126 for additional explanations on the interviews

2.3.2 Sampling

The first nine participants were recruited, interviewed and analysed in turn, consistent with GT methodology. As the prominent categories emerged (Charmaz, 2014), participants were recruited further in line with the process of theoretical sampling (Glaser and Strauss, 1967). Theoretical sampling is a critical element of GT research (Hood, 2007). The final three participants were therefore recruited specifically because they were non-medicated, in attempts to gain more information on a minority view15.

Rather than aiming for ‘theoretical saturation’ where data collection continues until no new categories or insights emerge, the authors sought to aim for ‘theoretical sufficiency’ in line with Dey’s (1999) principles. Here data is gathered adequately to allow the development of a comprehensible model of the explored area. Developed categories must be considered sufficiently suggested by the data. This approach was applied to the study’s method of opportunistic sampling to determine the sample size and linked well with the authors’ constructivist approach to GT16.

2.3.3 Qualitative interviews

The main interview was based on a semi-structured topic guide (see Table 3 and Appendix 19), developed by the authors and approved following consultation with a service-user panel. The topic guide intended to explore personal recovery experiences and elicit responses surrounding factors that had enabled their recovery. In line with Charmaz (2006), the questions served as a guide to direct conversation. Flexibility to follow the direction of participants’ conversation was permitted so as not to influence or restrict potential themes. Probing questions ensured depth from each participant17.

15 See critical review p124 for more details on theoretical sampling decisions 16 See critical review p124 for further discussion on the decision regarding theoretical sufficiency 17 See critical review p127 for further discussion on topic guide adjustments

Table 3. A sample of questions from the interview topic guide

‘Would it be ok to begin by telling me a bit about your views of the diagnosis of bipolar disorder, perhaps in relation to your own experiences?’

‘In relation to the idea of recovery or being able to live the life that you want, what term or phrase would fit best for you to describe this?’

‘What would you put being or staying well down to?’

‘How do you think you have managed to stay well?’

‘What do you think have been the most significant things involved?’ ‘That you did?’ ‘That others did?’

‘Is there anything that you would want to tell others about facilitating their own recovery?

‘You mentioned (…) what would you say was/is the most important factor/s?’

‘Is there anything that was less helpful in your recovery?’

‘Is there anything that you think is significant in our understanding in how you have recovered that you haven’t mentioned already?’

2.4 Analysis

Interviews were repeatedly listened to prior to transcription to allow the author to become immersed within the data (McLeod, 2011) and ensure quality of the transcriptions. Transcriptions were uploaded into NVivo qualitative data analysis software (QSR International Pty Ltd. Version 11, 2017) to assist with analysis. Data were analysed in accordance with Charmaz’s (2006) approach to GT methodology. Initial line-by-line descriptive coding was used for all relevant sections of the

transcript18. The most frequent and significant initial codes were then grouped to synthesise the data into developing categories of more analytic focused codes. New data was constantly compared to developing categories and previous data codes (constant comparative methods). This allowed for areas of similarity and difference within the inductive data to be noted and ensured that the developing theoretical model remained grounded within the data. Throughout the process, the first author kept ‘preliminary analytic notes’ or memos (Charmaz, 2006). These captured possible connections, insights and observations in how the theoretical model maybe developing. Discussions within the research team generated further hypotheses. Subsequent interviews allowed the testing of these building hypothesised categories. The relationships between focused codes were also analysed concurrently to develop the theoretical model.

2.4.1 Model development and quality checks

Discussions regarding interview technique and data collection were regular within the research team to ensure quality and adequate depth of exploration. Through a process of reflexivity, the authors repeatedly discussed codes, categories and relational links19. Initial diagrammatic models to integrate and represent these were developed. The overarching theoretical model and hypotheses were refined throughout further interviewing and analysis. This process enabled a more abstract conceptualisation of the data as a whole to develop (Lempert, 2007). Indeed, the use of a diagrammatic model to visualize the developing theory is vital to GT (Lempert, 2007).

3. Results

Following interview eight, no further novel categories were identified, suggesting that theoretical sufficiency had been reached. The diagrammatic model (Figure 2) presents the ten overarching categories (see Appendix 20) discussed by individuals and the evidenced relationships between them. It was not designed to represent an exact pathway of recovery, nor the viewpoint of all individuals.

18 See p129 in critical review paper for further detail on coding. 19 See the critical review p130 for further consideration regarding reflexivity and how the researchers influence on interpreting the data was managed.

84 Figure 2. Diagrammatic model of key categories

The model illustrates how support was an essential factor across the recovery process. Certain other factors emerged as important to then facilitate further progress. For example, ‘recognition of a problem’ was a critical point that led onto developing hope and determination for change. Categories that assisted in achieving recovery but were then maintained are presented in the lower sections of the model (e.g. ‘looking after me’). Categories and how they interrelated are described below with examples20 in Table 4, and Appendix 21. Appendix 22 shows in which participant interviews the overarching categories were coded and therefore arose from.

20 Extra utterances have been removed within quotations for ease of reading however the quotations are otherwise unchanged

85 Table 4: A summary of categories discussed by participants with example quotations

Category Subordinate Example quotations categories or relational links

1. Support … I mean in hospital I just remember at my lowest, … there was one particular nurse who I really kind of clicked with […], who really helped me... but the interaction between us, seemed to really helped me come out of my ... initial shell… […] so I remember him very distinctly because it’s a catalyst that situation […] whether there are other factors, as well that obviously go together too and that’s the catalyst (P12)

…sometimes those supports can be you know… the therapist and medication, sometimes those supports are the friends, the supports can be the job… (P34)

1a. Others I think a key part of it has been support from family and friends, I’ve been incredibly incredibly lucky that... my accepting me and family has always stood by me without question, and my friends have too... I think its just maintaining the showing they care connection and showing that they cared … and kind of … willing to see you at your worst … you know and … you know.. just knowing that they’d be there no matter how bad things got... (P34)

…it lets me know that they they don’t judge me based on a diagnosis, they judge me based on what I’m able to deliver in [work], and that feels that feels good … (P16)

86 1b. Having practical It seems a bit silly, but […] I got DLA when I first got diagnosed and that was with the help of someone from and accessible like CAB and that was massive because .. that gave me more independence because it meant that I could go support out and buy just small things.. and I know it sounds a bit ridiculous but like that, being able to have that was massive (P11)

1c. Receiving I think a lot of this was learning from my peers that the … you know if there is a relapse that that’s part of the answers and recovery you know that its not a perfectly straight forward road all the time … (P34) guidance

1d. Valuing … that connection is help helpful too, we we help to empower each other through that connection and to interactions with revitalize each other… (P29) others

…that experience that was hitting bottom, its like .. you know I have got to do something to change because 2. Recognition of this is… the mess that I’ve made of my life, where I’m at right now… that was the impetus you know… (P29) the problem …that experience had put a new sort of light on it so so for me actually the fact that, you know, I had a diagnosis is erm that can be treated psychologically, pharmacologically whatever I found found a very useful thing (P1)

…it made me feel quite insecure because I wasn’t sure .. I wasn’t sure whether … reactions I was having to people, things that I was feeling were genuine feelings or part of the illness or it was me, so it left me having this real sense of kind of loss of identity I think, after having it so… and I think that was the hardest thing to cope with it all, how it made me think about myself and question myself (P20)

87 …you’ve got to put in the effort and the fight […] with the help and support from from … everybody around 3. Believing that (P9) things can change and not giving up …focus on the little things, even if they are little things, little tiny things ..that you can do .. or you can say to yourself, or others can say to you.. that.. have even a slightest effect.. then .. then that’s a start.. […] that’s really hopeful because you know, you can start building on that…(P1)

I think, I’m also very, quite curious about things and so, my first instinct whenever I find out about anything is 4. Instinctive to do loads and loads of research and I so I went to the library [laughing] and I did loads of research about curiosity bipolar disorder and things like that (P20)

I just didn’t know what was going on properly, […] just try and have more insight, just look into it as much as you can, like read other peoples stories.. and yeah see if you can like relate to some of those (P11)

(Example of wanting I suppose sharing my own experiences with you know with other people, especially with people that are just to share own recently diagnosed... I think being able to reassure them that you can lead a you know a a fairly you know a experiences) fairly good life … after an episode, that’s very important kind of thing… its really helped me, you know and I’ve helped... and still helping others that are troubled with it (P9)

…if it hadn’t been the citalopram I don’t think I would have got to stage now where I’m in a state now where I 5. Medication can talk to you like this […] everything else was very important but that was the pivotal thing which really seemed to, you know, just work for me for some reason (P8)

… with the mood stabilisers […] you always wonder what would have happened if you hadn’t taken it all [laughs] I mean I I with the lithium I was never sure whether it was really doing much… (P20)

…at least when it comes to the mental health stuff, I don’t find…. that medication’s a useful part of that toolbox… I I just don’t um and … I think that’s ok and I think people need to understand that and I think a lot of people, you know I also don’t think that my toolbox has to be the same as everybody elses […] I was lucky when I came off my medication, my medical provider was very supportive … of my doing that … um and … we did it incredibly slowly … um … which was very helpful, but it was like the slowest taper in the world (P34)

…true recovery started when I gave up the meds [..] a lot of people say …well they’re still on meds and that they’ve recovered, and I find it really hard to comprehend that because … if you if you still have to take a medicine that means that you’re still sick to me, for me being recovered means not having to take medicine any more, that you’ve … you know done the psychological work that you need to do, it could be physically work you know, getting enough exercise and eating right … it means not really needing the drugs anymore because your your brain is back in order’ (P29)

89 I started … going for cognitive behavioural therapy with a psychologist at our health care, and I only did 6. Psychological maybe 5 or 6 sessions but I think she had planned more but things turned quickly after speaking with her and therapy a lot of, a lot of the tendencies I was having towards thinking things will never get better, when I when I saw it through the lens of the CBT I could see where I was... thinking poorly or thinking catastrophe when there was really no need to […] one thing I really appreciated the first day I met with her and was talking through my experiences is that she validated a lot of what I was experiencing (P16)

…I worked with one particular therapist and we dealt with a lot of the the… old crap that I’d just really kind of never, that I had always avoided and not really talked about…so I do think that was a big pa… it was a substantial part…I realised…it just wasn’t helpful anymore to me… to not talk about that stuff… so... but it took me getting to the point and then we finally did and then I was like, ok now I can move on (P34)

…the first time I did it, I was like hypomanic, so it was like a different approach and I’m like I don’t really need this, it just didn’t feel like it was doing much, whereas this time round, […] I was in a better place, I was more more stable I reckon (P11)

… you know I think … its again like finding that right set of people or individual therapists to work with… but that’s why I think forcing people into things doesn’t necessarily work (P34)

…well I mean it allowed me to then um be empowered. I put a little sign above my desk that said I’m the boss 7. Becoming the of me … and that was very powerful because I became the director of my life instead of letting everybody else director of your direct me (P29) own life …that made me more determined that I was gonna, you know that I was going to get better and I was going to stay well, … yeah I think and … you know and others you know around, sometimes you you can sort of see that you know the ones that probably are gonna you know recover, probably quicker than others … and… dunno.. it’s…. it’s you know it’s a hard thing to sort of put over to, to convey to somebody I think really, whose really really bad but as they get a little bit better, you know I think you do realise that you you’ve gotta put that effort in yourself (P9)

90 Facilitated by therapy: 8. Changing how I think The information provided in the CBT that that she gave me to read through and to .. to try to look at what she provide me, and where my thinking was matching up with some of the basically de-railing my mental recovery or reaching stability, what she provided allowed me to think that a lot, or see that a lot of what I was thinking and my trains of thought were not helpful and and how I could turn it around as well (P16)

8.a Comparing the Reflecting on what things were like in the past (8a1): past and now I think a lot of what I did was I would drive myself crazy worrying about the past, I’d drive myself crazy worrying about the future, I’d never be I’d never be [laughs] present on a particular day, I’d always be scared about things that were going to happen… dwelling on things that had happened in the past (P20)

Recognising the progress I have made (8a2):

It was important in the fact I had gone full circle. I had attended one of those groups when I was 16 and left within a couple of minutes. I was then chairing those meetings and it gave me a sense of pride in doing it (P33)

91 8.b Broadening of Gaining a realistic perspective (8b1): perspectives … instead of looking from the same old perspective, and sometimes you know, well black and white […], you wanna be in the middle somewhere, always be in the middle and looking at all options and, or looking, being prepared to go into bad times but you know that there’s always good times as well … and being balanced all the time (P8)

Questioning own thoughts (8b2):

…like I say whereas before a lot of my self talk would have been just completely negative… and I just try and turn turn that around a little bit (P4)

8.c Looking for the I’ve achieved more as a result of being diagnosed with bipolar, than I would have like otherwise, just because positives and its like given access to a career path that I might not have thought of’ (P11) appreciating what I have in my life …it was a journey, a major turning point in my life… its [laughs] one of the best things that happen to me in a way, but it was a horrendous thing that happened to me, but it was the best because it got me to a place where I am happy (P12)

[difficult experience] …gave me the sense that actually I am really strong (P20)

9. Accepting who I am and how I feel

9.a Self acceptance Examining self to work out what’s important to me (9a1):

I can’t believe I left this out, I did a lot to like to try and discover my authentic self... (P29)

… I think you know, all I can say is going back to what I have already said [laughs] and that was that was really…[6 second pause] examining what I wanted to happen and what I wanted from life and not being held back by …others, other peoples ideas about what my life should be about, so it is a strengthening of … yourself, in terms of you know, owning you’re your thoughts and owning the fact that you make the decisions… I mean it might, you know, it it kind of didn’t seem like that much but it was a, it was a big thing to get to (P12)

Embracing differences from others (9a2):

I just think yeah I don’t want to be like everybody else (chuckles)…but I think the children at times say ooh you’re a bit weird and I think that’s lovely and I love that when they say that, or you’re a bit different, and I say yes I am I I, as I said we’re all different actually (P8)

93 Accepting who I am (9a3):

I was quite taken aback I think the...with the diagnosis more than anyone else was, so ... getting through, getting rid of that self stigma was a big stepping stone (P16)

…so the way that I describe myself now… is I’m a person living in recovery from a diagnosis of bipolar disorder… but in terms of… you know, and I really really hate when people say I’m bipolar, like that’s .. that’s like no cos you’re not, you’re so much more than that, like just stop saying that, you know, and people get really frustrated with .. you know word police but I’m like there’s a reason why, you know people don’t go round saying I’m cancer… they just don’t so [laughs] (P34)

9.b Being able to sit One of the things I found most difficult at the time but since have since found quite useful is just accepting a with a range of feeling and not judging the feeling and kind of getting to understand that that feeling would pass (P4) feelings

10. Looking after me

10.a Gaining more Insight and awareness (10a1): self insight, awareness and I feel it came as part of insight as well, like cause that was just after the diagnosis and I’m like ok, I need to understanding need to start helping myself here, and … yeah so that that was quite important (P11)

Identifying early warning signs, triggers and maintenance factors (10a2):

I’m able to recognise that myself, in my own like thought processes, and the way that they might change. its like very like subtle changes, in the early days and if I’m able to like rein that in and you know, control it in a way, it it never happens, so someone wouldn’t notice, whereas before it just escalated very fast... because I wasn’t able to pick up on those minor changes (P11)

Learning what helps manage my mood (10a3):

…so it is a lot to do with knowing myself and knowing my moods and knowing what works (P4)

10.b Routine, I um put up a sign on my desk and it was um on the this sign it said focus, order, balance and simplicity, which balance and I called fobs, F.O.B.S, so I could remember focus, order, balance, and simplicity…(P29) boundaries Defining boundaries (10b1):

I think it is probably something that I’ve I’ve developed since we’ve gone along to be able to put things into compartments and then say right... we’re going to not do anything to this compartment for a while... just going to work on these 3, or not put energy into these 2, or we’re going to work on these (P1)

Creating and maintaining a balance in activities (10b2):

…getting my life in order and balanced of course, I mean that’s the whole thing of bipolar is that you’re not balanced so, I needed to like eat a balanced diet, and balanced play and work, not work too much not not play too much um and simplicity… (P16)

Having a routine to keep going (10b3):

I think when I came out of hospital I was maybe 2 stone overweight, which I never really was before … it was good to kind of socialize with, sort of build-up friendships again, maybe make new ones as well...to be in that sort of cycle when you are you’re actually motivated to go out and do something because its planned already, its already structured into your week what you’re doing… (P33)

10.c Setting One thing that stands out is is having, you know, sort of target, target setting… and I think you know, that can achievable goals be applied however well or unwell you are, if you like you know because obviously if if you’re un, you know you’re unwell your targets aren’t going to be nearly as high as they are as as they are when your well, and I think that was a a a … yeah an important thing for me to to realise, and and use really and I I do use it I suppose erm cos I think having targets and and reaching them, ticking them off, is a big part in recovery (P9)

I guess one one thing I I kind of reached a point, where I couldn’t even walk into [work] and so, and so she [Psychologist] would … suggest ok this week try just to drive up and and just park outside [work] and then next week maybe try to go inside the door, so some of the real road blocks I’d put in front of me, she helped tear down, and and and probably within in, our third or fourth meeting I was back in [work] … not [working] but at least I was in there […] but she helped me work through...the anxiety I was feeling, just step by step, not trying to jump all in at once (P16)

10.d Acknowledging One thing that that’s a huge influence that I should have mentioned earlier I suppose is just a, I gave myself and minimising permission and and really under doctors’ orders, not to.. try to do everything I was doing prior to being stress hospitalized … (P16)

The thing I can say is learning how to put less pressure on myself …and that is a learning, cos I realised I was being quite… tough on myself as as… quite a lot of people that I work with are… so … you know expect, expecting too much of yourself, its its letting go of some of that.. (P12)

10.e Doing things Doing things to have a sense of purpose and fulfilment (10e1): for me I think the biggest thing… really is … finding something…that gives you a purpose or a goal…and that’s gonna be different for every person … (P34)

Finding things that you love and enjoy (10e2):

I feel the best I I have done, in all my life, [laughs] and that is I can put it to a change of career, and doing what I absolutely love doing rather than previously when…I quite enjoyed what I was doing but it wasn’t really fully in line with…my values actually (P12)

Getting out and connecting to nature (10e3):

I love sitting in nature, or out on the garden looking, just connecting to nature I find very relaxing as well, that’s another very therapeutic thing for me...(P8)

Having time out to relax (10e4):

…just kind of taking that time, and just kind of having the time to myself) it kind of reduces my stress levels a little bit (P4)

Prioritising their own needs (10e5):

…but it did feel like, yeah, I just wanted to like try and please everyone whereas now, so its being a bit more selfish [laughs]…selfish doesn’t seem like the right word does it? but yeah [laughs] but you know, a bit more conscious of me, and like making sure I’m happy cos that’s the main thing, that’s going to be the main thing (P11)

Looking after their own wellbeing through diet, exercise and sleep (10e6):

I suppose I concentrated on doing more … physically or tried to…[4 second pause] so its you know, nothing unusual, its all the usual stuff of… you know, looking after yourself, your general health more (P12)

I think sleep is really important that’s another thing, you know if I kind of have to have 8 hours a night, if I if I lose sleep and I don’t have sleep I my mood because becomes more volatile… (P20)

…definitely to get a proper balance between…sleeping well and having proper structured times when I have like something to eat and...just to refuel again… kind of keep myself going properly as opposed to eating stupid times and not getting to sleep at proper times and things like that (P33)

I will go for a run, that’s what that’s, running is wonderful at both ends of the spectrum, running is the answer… when you’re down, obviously it gets you out, it you know, raises your endorphins and raises your heart rate, it just raises your mood...but actually if you’re sort of hyped up it lets you burn off steam (P1)

10.f Present I’m gonna rack my brains if there’s any other magic things I can tell you, but I just think, do the things you moment focused enjoy I think and you know, do things you enjoy if you can, and value your time, always value what you’re doing and be, be present with what you’re doing (P8)

99 1. Support

All participants identified support as a necessary foundation. Individuals broadly conceptualised the support they received from a variety of valued sources.

1a. Others accepting me and showing they care

Individuals described experiencing others as being ‘there in the background’ (P8), even through difficult times, allowed them to feel supported and not alone. This support was deeply appreciated in showing how much others cared for them, with awareness that not everyone in the same situation receives this.

Receiving support allowed individuals to experience a lack of judgement and an appreciation for who they are as a person, regardless of their diagnosis. For some, this perceived social validation helped form the mechanism allowing self-acceptance.

1b. Having practical and accessible support

Access to practical support was critical in the earlier stages of recovery when travel or financial constraints could have been a barrier. This included close proximity of services, access to support groups or a professional, financial support or employers accommodating leave and phased returns to work.

1c. Receiving answers and guidance

Peer support, often via support groups or online communities, was a source of information on what to expect, providing hope that recovery is possible. Advice from expert professionals regarding treatment options and ways of managing symptoms was described as valuable.

1d. Valuing interactions with others

Interaction and connection with friends, professionals or colleagues, was an important aspect for many, enabling them to feel part of ‘the wider community’ (P11).

2. Recognition of the problem

Recognising the existence of a problem was a turning point for many. It allowed access to treatment and further support, and seemed to prompt active seeking of guidance and a sense of empowerment. This appeared to occur either following a particularly difficult time, or receiving a diagnosis or explanation that fitted for them.

100 Differing views existed on receiving the diagnosis. For some ‘it was the answer to a 44- year-old question’ (P1). Others were grateful for no longer being alone in noticing the symptoms. Many viewed receiving a diagnosis as a key event since it allowed access to the correct medication and treatment. One (P14) described wishing that she had received the diagnosis earlier, believing the negative impact on her relationships could have been avoided.

Others had mixed views, explaining that receiving the diagnosis provided an explanation but was a difficult experience. Past experiences influenced what receiving this diagnosis meant to individuals. Furthermore, individuals described a loss of identity and sense of self as they struggled in attempts to separate themselves from ‘the illness.’

Another participant (P29) felt BD did not fit for her. She sought a more suitable understanding (spiritual emergency), which facilitated similar ongoing processes to those who had accepted the diagnosis. It appeared that recognising that a problem and then finding an explanation that makes sense to the individual was fundamental.

3. Believing that things can change and not giving up

All participants discussed developing hope and belief in change being possible. This arose from seeing peers who ‘had a life’ (P34), or from holding onto faith-based beliefs. A real determination was apparent, with individuals talking about having ‘to dig deep’ (P9) for their recovery.

Individuals showed a willingness and persistence to experiment until something worked, even when this required substantial effort or going against certain advice. Participants advocated how small changes are significant to progress towards ‘living the life you want.’

4. Instinctive curiosity

Natural curiosity led individuals to research their diagnosis ‘as a first instinct’ (P20). Participants reported aiming for a greater understanding about BD and guidance over treatment options or how to prompt wellness. Some individuals read others’ experiences to gain additional insight. Many recommended this, and sought to provide it for others.

101 5. Medication

All participants reported initially having taken medication. There were conflicting opinions regarding medication. The importance of people finding their own route to ‘living that they want’, in line with their own beliefs was demonstrated.

Some individuals discussed the long journey in finding the right medication, which was understood as ‘not a cure [but to] stabilise’ (P9). Nine remained on medication based on its perceived benefit, with participant one describing ‘for me, it’s the magic’. Others had reduced to the lowest dose but disclosed feeling concerned about discontinuing. These fears resulted primarily from experiences of symptomatic withdrawal effects during past discontinuation attempts. These were taken as evidence that the medication was beneficial.

Participant eight explained that his medication was not worth interfering with, understandably because of how well he currently felt: ‘I think well why rock the boat’. Uncertainty however did exist, with another stating: ‘I was never sure whether it was really doing much…’ (P20).

Three participants had chosen to come off medication. One described it as not a ‘useful part of that toolbox’ (P34) but acknowledged the difficult withdrawal process. Another (P14), based on her own research, chose to take a micronutrient supplement, which she experienced as beneficial without side effects. The other, who reported taking vitamins and the same micronutrient supplement occasionally, described that ‘true recovery started when I gave up the meds’ (P29).

6. Psychological therapy

Individuals described more readily being able to access psychological therapy post diagnosis. How therapy helped was ‘hard to put it into words’ (P9) for some people. Others explained that therapy primarily: provided a space to talk to someone non- judgmental; helped make sense of their experiences and work through past difficulties; increased understanding of triggers; offered guidance as to how to move forward and manage moods; and taught skills such as evaluating thoughts or mindfulness approaches.

Individuals discussed how, in order to progress, they had to be willing to explore previously avoided topics. Individual differences again highlighted the significance of finding the right approach and therapist, as well as timing. For example, one (P11)

102 described an unhelpful experience of therapy during a hypomanic episode, but later finding therapy enabled everything ‘to start making sense’.

7. Becoming the director of your own life

The notion of becoming empowered and in control of their lives was central to recovery. Individuals developed a sense of self-efficacy enabling them to shift from being a recipient, to feeling and being in charge of their recovery. Participants described requiring support and guidance but needing to ‘find their own path to recovery’ (P34). This change in perception of being able to own their decisions, increased determination and was described as ‘the most important and essential thing that shifted…’ (P12).

8. Changing how I think

Many explained how therapy had assisted with noticing ‘where my thinking was a little off’ (P14) and helped facilitate this change. For example, participant 16 talked about learning that previous thought patterns had been preventing him from moving forwards and that therapeutic techniques enabled him to alter these, whilst gaining a sense of control. The model suggests that ‘changing how I think’ and generating acceptance of the self are facilitative of each other.

8.a Comparing the past and now

Individuals reflected on what things were like in the past (8a1) such as their fearfulness of mood changes, or engaging frequently in worry or rumination. Being able to recognise the progress they made (8a2) appeared a valuable motivator for further change.

8.b Broadening of perspectives

A shift towards gaining a realistic perspective (8b1) led to less ‘black and white thinking’ (P8). This change gradually occurred through increased insight, often assisted by independent research and guidance from others. Learning to notice unhelpful patterns of thinking and then gently questioning this inner voice was viewed by some as an important skill that had developed in their recovery process (questioning own thoughts, 8b2).

103 8.c Looking for the positives and appreciating what I have in my life

Individuals’ developed an active tendency to ‘look on the brightside’ (P4). A general presence of appreciation for what they have in their life was evident. For some, this included an understanding of the gains since diagnosis. The ability to develop confidence and strength from past experiences was apparent in helping them move on.

9. Accepting who I am and how I feel

9.a Self acceptance

Self-reflection enabled participants to understand their values and what they wanted out of life (examining self to work out what’s important to me, 9a1). Some extended this through actively embracing their unique characters (embracing differences from others, 9a2). No longer trying to hide significant parts of themselves (e.g. sexuality or the diagnosis) reduced shame and facilitated acceptance. Acceptance of themselves and not viewing themselves as a label became fundamental for moving forward (accepting who I am, 9a3). Certainly overcoming ‘self-stigma was a big stepping stone’ (P16).

9.b Being able to sit with a range of feelings

The ability to tolerate and experience different feelings as they arose was another aspect that changed. Previously a fear of high or low moods limited this ability. An understanding and developed trust that certain feelings would pass, rather than lead to an episode, was therefore crucial in being able to ‘live the life you want.’

10. Looking after me

10.a Gaining more self insight, awareness and understanding

Initially insight and awareness (10a1) into themselves, BD and their level of control developed. Next, a process of identifying early warning signs, triggers and maintenance factors (10a2) increased understanding and independence. Strategies within therapy such as relapse prevention plans, facilitated by guidance and support was useful for some. Overall, learning what helps manage my mood (10a3) highlighted how individuals developed knowledge for personalised methods of coping to achieve and maintain stability. For example, several found their partners’ assistance in noticing signs was beneficial.

104 10.b Routine, balance and boundaries

Defining boundaries (10b1) was a factor that developed as individuals sought to take ownership. These boundaries referred to separating out aspects of life such as work and other commitments, and also metaphorical ideas of ‘psychological boundary, or spiritual boundary...[to] protect yourselves’ (P29). This together with creating and maintaining a balance in activities (10b2) assisted with effective mood management. Having a routine to keep going (10b3) improved initial motivation and then helped by ‘keeping track of things’ (P4). Individuals created their own techniques, such as designing physical reminders, to make this process easier.

10.c Setting achievable goals

Breaking things down and developing realistic targets which ‘you can focus on…and ... start building on’ (P1) was deemed ‘a big part in recovery’ (P9) as it ‘proved to myself that I could do it’ (P33) and allowed participants to gain further confidence.

10.d Acknowledging and minimising stress

‘Minimising stress is a major factor’ (P14) according to many who consciously made an effort to find ways to reduce the pressure and stress on them. Support from others guided this.

10.e Doing things for me

Individuals sought to make fundamental lifestyle changes in order to prioritise doing things for themselves. The diversity of this was captured by six subcategories (see Table 4). Working towards or doing something motivating facilitated a sense of worthiness and led to several participants making career changes. Certainly finding ‘something in your life you really love doing’ (P8) was frequently mentioned and included in participant 33’s ‘top tips’. A shift towards focusing on their own wellbeing was clear, with the benefits of exercise noted by several, including participant 20 who admitted to having previously been ‘sceptical’ about its impact on mood.

10.f Present moment focused

Several individuals talked about developing an ability to ‘be in the now’ (P8). Some described this as based on mindfulness ideas and was a key factor in now being able to appreciate and enjoy their life.

105 Overall

Individuals recognised their recovery had been a ‘combination of all this stuff’ (P9) whilst acknowledging what worked for them is not necessarily right for everyone.

Participants noted several barriers. These included negative experiences of medication and professionals, a lack of support, and most frequently the existence of stigma. It was evident that individuals need to be supported in their own recovery journey rather have a predetermined route as summarised well by the final participant:

‘I think it does show that people have to find their own path to recovery, whatever that means for them and that forcing anybody down a path, a particular path is…a hell of a lot more likely to backfire than it is to help...and so you know I think people just need to know what their options are and know that there are people here who will answer questions’ (P34).

4. Discussion

This study extended previous findings to learn from those who have achieved a longer lasting recovery following a BD diagnosis. Participants were keen to inform our understanding to improve the future for others and offered great insights into how they personally facilitated being able ‘to live the life they want’. Whilst the researchers intentionally did not define a more specific definition of recovery, it emerged that common themes existed within what recovery meant to participants. Their discussions reflected on common aims and experiences such as functioning to a certain level and doing things they wish to do, fitting with the notion of ‘living the life they want.’ GT analysis enabled the development of a model, which suggested relationships between described factors.

4.1 Findings in the context of current literature

Recognising the existence of a problem was proposed by the model as pivotal for other factors, such as belief in change, to progress from. Certainly Russell and Browne (2005) reported acceptance of a diagnosis as ‘the first step’ in recovery. This category is further consistent with earlier studies (e.g. Chapman, 2002; Young and Ensing, 1999), some of which have suggested it as a potential transdiagnostic recovery process (Harvey et al., 2004; Higginson and Mansell, 2008). Additionally, Miller

106 explained that ‘until you have accepted what has happened…it is difficult to move forward’ (Miller, 2009 p.17). Participants described how recognition of the problem led to them actively searching beyond the initial medical guidance, providing alternative treatment options. This gathering of information has been previously identified (e.g. in Mansell et al., 2010; Russell and Browne, 2005) however, the instinctive nature of this curiosity was more evident within the current study.

The conceptual framework of personal recovery for mental illness was developed from the first review on personal recovery in mental illness (Leamy et al., 2011). Current extensions include the potential stages of processes involved, alongside possible relationships between categories. For example, the category of ‘connectedness’ included the value of support from relationships, peer support groups and being part of the community (Leamy et al., 2011). The current study supported these findings and demonstrated further subcategories of support such as practical and accessible support. The notion of support being foundational for other factors was also established. Certainly, Michalak et al (2006) concluded social support was the most important factor in determining quality of life. Additionally, Miller (2009, p14) explains how ‘strength and support from the people in your life can help you come back from the other side’.

Professional therapeutic support was also highly valued. It was posited that for many, therapy assisted in facilitating acceptance of their ‘authentic self’. This has parallels to the BPS’s report findings that defining the self and developing self-acceptance is suggestive of recovery (Cooke et al., 2010). The category of acceptance also encompassed being able to experience a range of moods. This corresponds to the Integrative Cognitive Model (Mansell et al., 2007) which posits that extreme and conflicting appraisals of changes in mood fluctuations may maintain BD. Certainly alterations to how individuals cognitively viewed themselves were identified. Additionally, these changes may be central to realising one’s own needs. Making behavioural changes, in line with these needs, together with activities providing a sense purpose or enjoyment, helped aid and maintain recovery. Need-based factors including reducing stress, and creating boundaries, are consistent with previous findings (e.g. Russell and Browne, 2005). However, the uniqueness of an individual’s chosen path to this point and the unique way these are prioritised is prominent this study.

Participants’ determination and belief in the feasibilty of change acted as a driver for other intrapersonal processes involved. This hope, together with the relationship

107 between acceptance of the self, moods, BD and thinking patterns, are novel findings and extend on the framework of personal recovery (Leamy et al., 2011). Individual variance and the value of a unique recovery path were also made more apparent. This is in line with the BPS’s stance on recovery (Cooke et al., 2010) and therefore the model is not designed as an exact pathway to recovery.

The notion of becoming the director of your own life has previously been described as: fostering self-empowerment (Young and Ensing, 1999); independence and autonomy (Michalak et al., 2006); taking responsibility (Todd et al., 2012); or claiming control (Chapman, 2002; Fernandez et al., 2014). It aligns with the concept of locus of control and its influences on our behaviour (Ajzen, 2002). It was hypothesised that without belief of internal control, individuals are unlikely to progress to make the necessary changes for recovery. Identifying values and being able to work towards value based goals with both determination and flexibility ensures the positive benefits are experienced (Kelly et al., 2013). Individuals were clearly not passive patients, instead actively defining their own route to recovery and seeking guidance when necessary. Hope and persistence appeared deep-rooted within individuals, often helping to foster empowerment that assisted in the facilitation of factors such as prioritising their own needs. Whereas Young and Ensing (1999) found spirituality to be a frequent source of hope, these participants particularly talked about being motivated by others who had achieved recovery. Support groups or online communities were a prominent source of this and offered challenges to the medical perception of recovery not being possible.

Many of the identified categories are fundamentally similar to those recently described in a qualitative exploration of individuals experiences of CBT for BD (Joyce et al., 2017). Strikingly the factors important within therapy match those described as valued in this study: a kind therapist to talk to, experiences being normalised and learning methods to broaden understanding. Increasing insight into the useful aspects of therapy is being gained. Furthermore, the subthemes described within ‘changes made following therapy’ are comparable to categories described in this model. These included: acceptance of BD, mood changes and the self; thinking differently; increased engagement with life; and empowerment and the ability to express their needs (Joyce et al., 2017).

The main area of disagreement and ambivalence within the sample was regarding psychiatric medication as reported previously (e.g. Mansell et al., 2010). For many, medication sought to stabilise their mood to enable engagement in other processes such as therapy or work. For others, discontinuing medication was the starting point in their recovery. Education and advice regarding discontinuing medication was rare.

108 Greater recognition is needed that whilst medication may feature in some individuals ‘toolbox’, for others it promotes reliance and the notion of BD as lifelong condition they can never recover from.

4.2 Further clinical implications

The current findings are indicative of the need to shift towards service provision holding ‘an attitude of patient-perspective care’ (Carey, 2016). Promoting self-management and transferring responsibility away from professionals and onto the service-user is vital (Stewart & Wheeler, 2005). Certainly, existing service structures are in part decreasing service-user self-dependence (Todd et al., 2012). Services need to create a framework in which people are enabled to direct their own recovery process. This would move away from simply providing standardised treatments. Creating a more joined up service provision would aim to reduce the negative impact of fragmented services (S.A, 2018). Choice regarding avenues of social contact, medication and psychological interventions needs to exist, with resources more readily accessible. Those supporting the individual should aim to be attentive to their idiosyncratic needs and respond accordingly, encouraging, but being led by the recovering individual. Holding an understanding of the individual’s definition of the problem is central to enable others to work from within this, and create tailored recovery pathways. The provision of consistent support needs to be available from the outset. This support could be provided by professionals, but fundamentally should be encouraged from existing or generated social networks, in line with patient preferences. Perhaps standard optional contact with those with lived recovery experiences would promote hope and challenge the current diagnostic message.

Increasing focus on empowerment, rather than fostering dependence on professionals and services, may offer more effective packages of care. Increasing collaboration between professionals and service-users could improve recovery outcomes, as already recommended as relevant for medication (Cappleman et al., 2015). Certainly shifting towards a framework in line with patient-perspectives will offer true choice and value- based interventions, and assist in individuals regaining control. Loss of self-control is described by perceptual control theory as a conflict which when activated can disrupt wellbeing and cause psychological distress (Powers, 1973; Mansell, 2005).

Policies and guidelines need to be adjusted in line with this attitude of patient- perspective care. Further education, extending to the general population, is vital to reduce stigma to prevent messages of hopelessness and ‘lifelong conditions’ being fed

109 to those at their most vulnerable. Certainly, perceived stigma and negative judgement were the most described barriers for individuals’ earlier recovery in this study.

4.3 Limitations and suggestions for future research

It was hypothesised that a subgroup of people existed for whom their recovery had involved distancing from the diagnosis itself. Study advertisements sought to recruit people irrespective of their current views of the label. However, limitations in the study’s recruitment methodology existed.21 Future recruitment needs to go beyond social media and services linked to mental health in order to reach these groups.

Conversely involved participants did class themselves as in recovery or beyond this, and not just ‘managing’ (e.g. Russell and Browne, 2005). Differences existed in regards to the terminology used to describe this, ranging from wellness to stability (see Appendix 9). What is meant by recovery and how to quantify it remains an avenue for supplementary exploration. Several participants described how the term recovery was not something they agreed with. By making links to this concept, certain people may have been discouraged from participating.

A lack of a standardised measure of functioning could be argued as a limitation. However, a self-defined view of functioning level and life satisfaction was intentionally taken. This hoped to facilitate the inclusion of a range of people. Extensions could investigate potential differences, for example between groups for whom medication plays or does not play a role.

Additionally, the proposed model is not promoted as applicable to everyone who goes on ‘to live the life they want’ following a diagnosis for BD. Instead it captures a representation of factors reported as pertinent (Charmaz, 2006). Attempts to develop a specific model of recovery should be done with caution. Being constrained to predefined routes was described as detrimental, with participants highlighting their unique pathways as important. Indeed, some internationally based participants discussed less widely known factors such as the involvement of micronutrients. This is suggestive of the potential for other avenues of treatment without the same level of side effects (Rucklidge et al., 2010). Certainly, larger controlled studies are required to explore this further.

21 See critical review p125 for further discussion of limitations.

110 4.4 Conclusions

The current study supports the notion that BD is not necessarily lifelong and recovery is indeed possible. The identified processes involved are consistent with other literature and recovery accounts across other disorders. The findings notably extend the importance of factors such as support and taking ownership as key in long term recovery after a diagnosis of BD. Interest from people internationally is highly suggestive of recovery following a diagnosis of BD being globally achievable and highlighted the importance of self-defining their route to recovery. A shift towards patient-perspective based attitudes is encouraged to help facilitate these changes.

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115 Paper 3: A Critical and Reflective Review of Papers 1 and 2: A Systematic Review of Distress and an Empirical Study on Facilitating ‘Living the Life You Want’ Following a Diagnosis of Bipolar Disorder

Paper 3 has been prepared in accordance with the guidelines for contributors (Appendix 1) for submission to the Journal of Affective disorders for continuity within the thesis. However, this paper is not intended for publication.

Word count (excluding references): 5983

116 1. Introduction

Bipolar disorder (BD) is described in the literature as a severe and chronic mental health problem (Grande et al., 2016). The historical basis on which a diagnosis is made, and current medical perspectives, promote a message that BD is a lifelong condition (American Psychiatric Association, 2013). Advancements in understanding are occurring across mental health diagnosis, however BD remains unstudied in certain areas. The aspects of BD experienced as distressing is one area of uncertainty.

There has also been an increase more recently exploring processes involved in recovery following mental health problems, including potential transdiagnostic factors. Research has tended to focus on psychosis, leaving further uncertainty remaining around BD.

The papers in this thesis aimed to address the gaps in the literature. Firstly, a systematic review (paper 1) aimed to synthesise accounts from people with BD regarding what they experience as distressing. Secondly, a direct qualitative project (paper 2) aimed to explore what factors are involved in facilitating recovery following a BD diagnosis, from those with lived experiences.

This paper provides a critical appraisal and reflective account of conducting these related research projects. The methodological decisions made, including considered alternatives, are reviewed alongside the strengths and limitations. Clinical implications of the findings and possible areas for future research are also discussed.

2. Paper 1: Systematic review

2.1 Rationale

It is known that psychological interventions and other treatments existing for BD focus on symptom reduction. Psychological therapies such as cognitive behavioural therapy, the main therapeutic approach advocated by The National Institute for Health and Care Excellence (NICE) guidance for BD, are modestly effective at best (NICE, 2014; Chiang et al., 2017). Across other mental health difficulties, research has begun to investigate what people actually report they experience as distressing (e.g. Andrade et al., 2016; Griffiths et al., 2018). Expanding this exploration to BD seemed crucial. During research team discussions it was considered whether there may be similarities

117 between the factors that cause distress and those that are involved in recovery processes. The review therefore linked well with the empirical project being undertaken.

Initial discussions considered whether the systematic review should explore solely qualitative, or both quantitative and qualitative research. Due to the novelty of the topic area it was uncertain as to how much published research existed. Which approach would allow a sufficient synthesis within the time available was considered. Early scoping exercises (across a wide range of databases and a Google Scholar search) involving the term distress identified no qualitative research directly exploring this within BD. However, further scoping searches suggested that sufficient qualitative literature, containing relevant first person accounts did exist once the term ‘distress’ was removed from the search. The decision was therefore made to conduct the review on qualitative work. This avoided potential limitations of the involvement of predefined constructs surrounding distress involved in quantitative studies. Coincidently, once the searches had been undertaken, further criteria had to be added to reduce the number of included papers. These ensured sufficient homogeneity of papers and aimed to maintain quality of the synthesis within the timeframe.

The review was informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (PRISMA-P, Moher et al., 2015) and Kable et al.'s (2012) structured approach to reviews article. These guidelines were used to ensure that the process of conducting the searches, screening for inclusion, quality appraisal, data synthesis and reporting of results were systematic and clear.

2.2 Searching

The searches were undertaken across four electronic databases (Embase, Ovid MEDLINE, PsycINFO and ASSIA) in August 2017. 22 These databases were considered to provide a sufficient overview of journals and therefore articles, whilst attempting to limit large numbers of irrelevant search results. I used my knowledge around database subjects, alongside further guidance from the systematic review advisers at the University of Manchester who are experts in the field. For example, databases known to contain journals more related to psychological disciplines (e.g. PsycINFO) alongside those with more biomedical viewpoints (e.g. MEDLINE) were

22 Refer back to section 2.1 of paper 1 for further details on the searches.

118 included. A balance was required between creating and conducting a search sufficient to identify relevant research, whilst working within time constraints.

Qualitative studies frequently use poignant quotations as the paper title. Guidance was sought from the systematic review advisers at the University of Manchester to ensure that relevant papers, where none of the search terms were present in the title, would still be retrieved. The use of MESH terms and searching via keywords (rather than title only) aimed to ensure relevant papers would be collated. The refined search terms were piloted to check they collated articles consistent with the inclusion criteria. Target papers were identified, and search results checked to ensure they were retrieved, prior to conducting the final database searches. However, it remains possible that some relevant studies were not identified by the search strategy.

A potential limitation of the systematic review was that the searches were conducted in August 2017 to allow sufficient time for screening and inter-rater reliability prior to data extraction and analysis. Further relevant research may have been published since this date and therefore not included in the review. However, the final citation and reference searches were conducted in January 2018. It was considered that any highly relevant articles published since the final database searches would have likely cited at least one of the existing included papers. New publications should therefore have been identified during this process. Furthermore, the aim of the review was to gain a preliminary synthesis of this novel area, rather than collate all existing literature. Indeed, ‘conceptual saturation’ whereby a sufficient rather than an exhaustive collection of the literature was aimed for (Thomas and Harden, 2008).

Conversely, several possible publication biases exist in this review (Centre for Reviews and Dissemination (CRD), 2009). For example, the sole use of computerised literature searches prevents the inclusion of qualitative research published within books and other grey literature (Britten et al., 2002). Had further time been available hand searching strategies may have been a useful addition. Furthermore, the decision was made, with the agreement of the systematic review advisers, to limit search results to peer-reviewed journals. Whilst this further limits the inclusion of all published first person accounts, it aimed to ensure a higher level of quality within the included papers and therefore of the review itself. An additional limitation is the restriction of the searches to the English language. This is generally not advised due to potential biasing (CRD, 2009). However, due to the qualitative nature of the data, it was considered that translation could potentially alter the meaning. Any changes in meaning away from the direct first person accounts could confound any drawn conclusions. Furthermore, time limitations, and the lack of funding and access to translation services had to be taken into account.

119 Overall, whilst limitations within the search methodology are acknowledged, the novelty of this area of investigation means that the searches were considered sufficient for this provisional exploration.

2.3 Screening

The screening process23 was conducted in line with guidance from Boland et al. (2017) in two stages: titles and abstracts screened together, followed by full paper eligibility screening. Initially it was considered to conduct the screening stage informed by the three-step process of study selection in meta-synthesis (Meade and Richardson, 1997). Here overall search results are reduced via their title, abstract and then full paper separately. However, due to the frequent ambiguity of qualitative paper titles and therefore difficulty in applying inclusion and exclusion criteria only on titles, this was amended prior to the screening stage.

Throughout the screening process a significant effort was made to ensure reliability of the decisions for inclusion or exclusion of papers. For the title and abstract screening stage, a blind researcher (CP) independently screened a third of the results. At full paper screening, both supervising researchers independently screened twenty percent of papers (identified by a random number generator to reduce bias). All initial disagreements were discussed and I rescreened to account for these at full paper stage.

2.4 Analysis

There are several different approaches for the synthesis of qualitative studies. These include narrative synthesis, meta-ethnography, grounded theory (GT) and thematic synthesis (Barnett-Page and Thomas, 2009; Dixon-Woods et al., 2005; Noblit and Hare, 1988). Discussions occurred within the research team regarding which methodology would be most suitable for the synthesis of this data. Due to the novelty of the area of interest, and in order to go beyond a descriptive overview of findings, thereby aiming to develop novel interpretations, a thematic synthesis was considered most suitable. The approach developed by Thomas and Harden (2008) was followed. This aims to draw inferences from the multiple data sources as a whole. Thematic synthesis also allows data with differing contexts and therefore a mixed set of

23 Refer back to paper 1 section 2.1.3 for further details on the screening process

120 population views to be combined. It was anticipated that the data gathered would require this ability for its synthesis.

Thematic synthesis draws on both meta-ethnography and GT ideas. The use of meta- ethnography was initially considered as an alternative methodological approach. However, this methodology requires many assumptions that were unlikely to be met by this data. For example, contextual similarity of the studies is assumed. Indeed, meta- ethnography holds a stance of ‘objective idealism’ suggesting that understandings are collectively shared (Barnett-Page and Thomas, 2009). Furthermore, meta-ethnography was originally used for the synthesis of a smaller number of papers (Noblit and Hare, 1988). Although recent adaptations have applied meta-ethnography to a larger data set (e.g. Pound et al., 2005), it was considered overall that thematic synthesis was the most viable approach for this review. Indeed, thematic synthesis was developed with the aim to synthesise data for reviews that seek to explore questions relating to intervention need, appropriateness and acceptability (Thomas and Harden, 2008). The epistemological stance that our knowledge and experiences are influenced by our held beliefs and perceptions, is central to the approach taken within thematic synthesis (known as critical realism, Barnett-Page and Thomas, 2009). The exploration of what causes distress, from those with personal experiences, to seek to improve interventions is therefore well suited to this methodological approach.

Within the methodology, line-by-line coding conducted independently by multiple members of the team, is recommended. For example, Thomas and Harden (2008) report the use of three independent coders. However, this was not feasible within this research set up and is therefore a potential limitation of the review. However, regular research team discussions were held to ensure agreement and reduce bias within the coding and interpretations being made.

2.5 Quality appraisals

Quality ratings were not used to determine inclusion for the review but conducted in order to provide a study context. Consideration of study quality was also taken into account during the analysis, to assist with reducing unreliable conclusions being drawn (Dixon-Woods et al., 2005). I conducted the quality assessments using the Critical Appraisal Skills Program (CASP, 2014, Appendix 4). The CASP is considered an internationally recognised tool for appraising qualitative and quantitative literature (Kable et al., 2012). Both supervising researchers then independently rated 20 percent

121 of papers. Initially, discussions were had regarding discrepancies. However, it was agreed that the quality assessment process was very subjective. Indeed, the inter-rater reliability rating (Kappa= 0.33) between the two supervising researchers highlights this subjectivity. This inter-rater reliability score however was crucially based on occasions of discrepancy where one researcher stated ‘can’t tell’ instead of ‘yes’ or ‘no’ against that criterion. There was only one occasion where researchers differed between stating ‘yes/no’.

When extracting participant demographic details, it was noted how papers widely varied in the level of details reported. Authors were contacted to request further information in instances where basic information (e.g. gender split and age details) were not provided. However, only four authors responded with additional information. Significant gaps therefore existed in the demographical details24 of the participants the synthesis was based on. It was thus limited in how conclusions on generalisability could be drawn.

3. Paper 2: Empirical paper

3.1 Rationale

The proposed research project was presented to the university community liaison group (CLG, a group of people with lived experiences) for their consultation on the project design and methods. The comments were highly positive, with servicer-users stating the relevancy and value of the topic of exploration. They reported being confident that people would be interested in participation and confirmed that they knew of people who would reach our inclusion criteria. The decision around including people who were both taking or not taking medication was partly guided by the CLG’s advice. They discussed how people varied in their views and use of medication. There was a concern that by limiting to people who were not taking psychiatric medication we could be excluding a group that otherwise would fit well within the criteria. The team also felt that certain assumptions on the definition of recovery were being applied if this was the case. Since a generalisable conclusion of viewpoints was aimed for, this would have been a significant limitation. Further advice was sought regarding the overall study aims and methodology from a service-user researcher who assisted in piloting the interviews.

24 See table 2 on p24 in paper 1 for the included study characteristics

122 3.2 Developing the research

Quantitative methodology requires a prior level of understanding of the area being investigated. As discussed, the novelty of this study meant that this approach was not appropriate. Furthermore, the aim was to seek a range of views from those with personal experience. The use of quantitative measures based on predefined constructs would have prevented the capture of the nuances within the population. Quantitative methods would have therefore imposed constraints on developing a further level of understanding around the processes and factors involved in recovery.

There are a number of distinct qualitative approaches. These include thematic analysis, interpretative phenomenological analysis and GT. Like with quantitative analysis, some qualitative approaches use pre-defined constructs or seek to gain support for a pre-existing theory. GT however, is distinctive since it offers a method of generating an understanding of factors and processes involved. Since no pre-existing theories on recovery in BD exist, GT was highly suited. The opportunity to construct a theoretical model of the processes involved was also beneficial. Within GT several approaches exist. The approach as defined by Charmaz (2006) offers an accessible constructivist interpretation of GT. This linked well with the researcher’s constructivist stance, as well as offering a clear and systematic framework, in which to collect and analyse the data.

During the project development, consideration was given to the best way to determine the functional outcome threshold (i.e. quantify recovery). In existing literature, recovery is often not measured (e.g. Todd et al., 2012). The use of a recovery measure, for example the BD recovery questionnaire (Jones et al., 2013) was considered. However, it was felt that arbitrarily defining recovery could potentially exclude some people who viewed themselves as recovered. Enabling individuals to partially self-define their recovery through the criteria of ‘living the life they want’ following a BD diagnosis was considered most suitable. This is partly in line with the definition of recovery by Anthony (1993) who states that recovery is ‘the process by which people can live fulfilling lives despite experiencing mental health symptoms’. However, it was further aimed that people who no longer experience symptoms which significantly impact on their lives, and who maintain a high level of functioning, would be recruited.

Another key focus of discussion was the minimum length of time required for the defined recovery period. It is unclear how long someone needs to be past an episode to be unlikely to experience relapse or be deemed ‘recovered’. Certainly, the current diagnostic criteria would suggest that recovery is not possible. These discussions

123 centred around the feasibility of recruitment since it was uncertain how many people would be interested and fit the criteria, versus a sufficient recovery period that would extend on existing literature. Existing qualitative literature explored recovery in people two years post an episode (Mansell et al., 2010; Russell and Browne, 2005). Extending this to four years was considered to offer valuable further insights whilst reducing the risk of extending too greatly and being unable to recruit.

3.3 Recruitment phase

In the study design phase, the CLG and other service-user contacts expressed the possibility of high interest in the study. Certainly, a positive response was received from many organisations in their interest and support in advertising the study. However, after the initial recruitment drive interest, there were concerns that the recruitment strategy may not recruit sufficient numbers within the available time. The decision of not seeking NHS ethical approval was questioned. This decision had been based on the perceived sufficient number of leads and contacts, as well as the assumption that the population the study was aiming to attract would not be involved in NHS services. An ethical amendment was therefore made to approve the activation of a contingency plan. The contingency plan was to reduce the recovery period to three years (from four years). However, a second major recruitment drive was sufficiently successful in increasing interest. The original recovery period, choice of methodology and recruitment routes (i.e. non-NHS) was therefore adhered to.

In the final stages of recruitment, participants were selected in line with theoretical sampling to attempt to address the gaps in the developing categories (Glaser and Strauss, 1967; Corbin and Strauss, 2008). This included specifically seeking future participants who were no longer taking medication. Difficult conversations were therefore required in turning interested people away. I drew on my clinical skills as a therapist to manage these situations. It was noted that the situations felt very different from therapy in regards to people selflessly offering their time and support which was then rejected. An awareness of people’s mental health and distress was vital, especially when having to turn people down because they did not meet the specified recovery period.

Due to wide disagreements within the literature on the definition of theoretical saturation, the level of detail collated across initial interviews and time constraints, the decision was made to aim for theoretical sufficiency rather than saturation (Dey, 1999; Charmaz, 2006). Additionally, my constructivist view fitted with the notion that data can

124 never be fully saturated due to individual differences. The risk of drawing conclusions from reported ‘saturated data’ could falsely impose a generalised model onto the studied population. Recruitment therefore ended once no further categories were developed and once hypothesised links and sufficient supporting evidence within the data was identified. This was considered acceptable even with a small sample size, given the level of depth within the data (Charmaz, 2006).

In regards to the recruited sample, a reasonable breadth of cultures, ages, and an even gender mix was obtained via international recruitment, which offers strength to the study. Participants reported a range of previous episodes and hospital admissions, giving an overview of different past experiences. The option of video calling software was used for both interviews. Nine of the participants had their main interview conducted via this or telephone. Some issues with the video software arose with difficult lines (mainly within the first interview) and it is possible that the building of rapport was affected (although this was not noted). However, overall the benefit of not being limited to local participants was a real strength of the study. Participants were all educated to at least A-levels (or the equivalent), and employed, which is plausibly expected due to level of functioning reported. However, this education level and the recognition of the fact that the study only captures the views from those who volunteered their involvement, creates possible biases within the findings. It is unknown how much of an influence these contextual and personality-based characteristics would have had on individuals’ recovery. Nevertheless, the lack of much existing research within this field means that any further findings should be viewed as informative.

A further limitation of the study is that none of the participants reported to have distanced themselves from the diagnosis. Only one participant discussed how the diagnosis had never felt quite right for her. Whilst it may not have altered the findings, the research team were aware of people for whom distancing themselves from the diagnosis had been a significant part of their recovery. The fact that they, and others for whom this was potentially the case, did not come forward to participate suggests a possible limitation within the study’s recruitment strategy. There was good evidence of the study advert being shared across social media even from accounts with high numbers of followers. However, the reliance on mental health support groups and linked social media may have meant that those who have since separated from mental health services and their connections, may not have been reached. Word of mouth was also assumed to be a vital part of the recruitment process. Certainly, some participants spoke of others that they were aware of in similar situations to themselves. The final participant provided a list of names of whom this was the case. However, time

125 limitations meant that these could not be followed up. Further research over a longer time scale, to allow for the gradual spread of advertisement would be valuable. If subgroups of participants who no longer identify with the label of bipolar disorder exist, further exploration of the processes they report to be involved would allow greater depth of insight. Scope for comparisons to be made between subgroups could then exist.

In line with feedback from the CLG, which confirmed the thoughts of the research team, the option of not consenting to the use of anonymised quotations in the write up was offered (see Appendix 11). However, all participants consented to this and several made comments that they would be happy to be identified as they already spoke publicly about their experiences. Indeed, all those interested in participation expressed great importance in the study area.

3.4 Conducting interviews

3.4i Diagnostic interview

Originally, we planned to use the full SCID-RV (First et al., 2015) to provide further information on comorbidities and diagnosis. However, the length of time required to undertake this for participants was burdensome and thus not deemed to provide sufficient benefit. Module A, investigating mood episodes, was therefore selected alongside two screening questionnaires which seemed sufficient25.

The diagnostic interview was used to confirm that participants had previously met criteria for a BD diagnosis. Given the changes across the DSM and since some participants were originally diagnosed over twenty years ago, it is possible that the research diagnosis may have differed to their original diagnosis. Indeed, there were several participants, for whom their explanations of high moods now met the threshold of mania rather than hypomania, giving them a diagnosis of BD I rather than BD II. Anxiety was raised in regards to how to manage this if participants asked what their research diagnosis was. Supervision was sought and agreements made on how to respond, although interestingly none of the participants requested this information. The diagnostic interview stage also raised an interesting notion of there being another group of people who are still experiencing episodes but report to be ‘living well with bipolar’.

25 See further details on the diagnostic assessment in paper 2 section 2.3.1.

126 Due to the discussion of potentially distressing past experiences, and acknowledgements of the physical distance from participants in the event of risk issues, distress and risk plans were crucial. Furthermore, differing time zones meant that some interviews were conducted outside of normal office hours. Supervisors were informed as to when these were and were available if required for advice on risk management. The relevant emergency helpline numbers for the participant’s specific region were also found in preparation, in line with the protocols.

3.4ii Main interviews

The semi-structured interview26 was designed to allow flexibility for participants to discuss the factors that they felt were most pertinent in their recovery. I drew on my clinical skills to provide a safe space in which participants would feel at ease throughout. My style was curious and validating, with a genuine interest to seek to understand participant’s experiences. A bottom-up approach, whereby no prior expectations were made, allowed the interviews to be genuinely participant led. Early supervision conversations had sought to develop my boundaries within this context. For example, guidance was given on being able to end the interviews should I feel uncomfortable, although this was never necessary.

After six interviews, the research team reviewed the emerging themes and categories. The topic guide was adjusted to allow an expansion of understanding across several areas. These included participants understanding of the aim of medication, and whether or not participants felt dealing that with significant life events had been involved in their recovery.

The use of memos to aid my own reflection following each interview highlighted how following several of the interviews (four and nine) I had felt on occasions that I had fallen into a more therapist style of summarising and reflecting back what the participant was discussing. Due to not wanting to influence what participants were saying, a conscious effort was made to avoid falling into this role. Conversely there were times when my prior clinical experience was beneficial. For example, one participant referred to a significant event but reported not wanting to discuss it at the start of the interview. Once rapport had been built she stated that she wished to disclose it, which enabled further insight to be gained. Furthermore, my ability and

26 Refer back to section 2.3.3 in paper 2 for more detail on the interviews

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confidence in managing affect levels and containing high emotions was useful to ensure distress was not caused.

Whilst there were no direct benefits to participation, many participants reported they had found involvement in the study very valuable. Participants were keen to share their views and expressed gratitude and enthusiasm for the study taking place. Many discussed the value of: being able to tell their story, the possibility of being able to help others, or just becoming aware that people were interested in exploring this topic and trying to improve understanding around BD. It was touching how keen participants were to share their experiences. I felt humbled at several points through the recruitment and data collection period when reflecting on how people had given up their own time to participate.

3.5 Transcribing

The process of GT methodology whereby data is transcribed and analysed prior to the subsequent interview meant that it was important to plan ahead (Charmaz, 2006). Initially it was uncertain as how much time would be required between interviews to facilitate transcription and analysis. Uncertainty over the number of participants required, and the addition of the diagnostic interview, meant that I experienced initial concerns over sufficiently managing the process. These concerns were regarding finding the balance to ensure there was enough time to recruit sufficient numbers whilst allowing enough time between interviews to avoid rushing the analysis, which could have reduced the overall quality of the study.

These initial concerns led to a further amendment being requested for ethical approval. This amendment enabled the use of a further contingency plan for transcription support should it be necessary. This would have been a volunteer or paid administrator. However, as the study was underway, it became evident to me how crucial the stage of transcribing the interviews was in terms becoming fully immersed within the data (McLeod, 2011). It was felt that this facilitated a higher level of coding since I was able ‘hear’ the voices of participants during the coding stages, allowing further interpretations to be drawn. I therefore transcribed all the interviews, which also ensured consistency between data sets. As I gained experience within the methodology, I gained confidence in planning sufficient time and managing recruitment alongside data analysis.

128 3.6 Coding

This study was my first experience of conducting qualitative research. Supervision was therefore used throughout the process to offer guidance and I proactively sought relevant resources to guide the methodology.

Following transcription, the data was uploaded into NVivo qualitative data analysis software (QSR International Pty Ltd. Version 11, 2017). All initial coding was conducted using this software, with folders created to store each interview’s initial codes. Complete coding aimed to identify ‘anything’ and ‘everything’ related to the research question (Braun and Clarke, 2013). Initial line-by-line coding was adjusted following supervision to be more ‘clause-by-clause’ to allow full sentences to be captured suitably. Folders were also created to group and categorise the most important codes into more analytic focused codes. Print outs of the developing categories were used to re-read and ensure each code was reflective of the developing meaning of the category. It was observed that whilst participants had had very different experiences of symptom levels and being diagnosed, even after four interviews there was a similarity within the underlying principles involved in their recovery. This was especially evident in the factors which developed into the category titled ‘looking after me’.

I initially experienced some difficulty in grouping overarching categories, due to the novelty of this methodology. Discussions with my supervisors shifted the focus to be on meaning rather than more obvious separations. For example, in the early stages the category of support contained subcategories of ‘professional’ or ‘family’ support. Broadening out to consider the type of support being provided and why it was important, rather than who provided it, was crucial. Four main subcategories where then developed to capture this including ‘others accepting and showing that they care’ and ‘having practical and accessible support’.

Adaptations to categories and category labels occurred through the above process alongside discussions with the research team. Descriptive labels were used initially to act as reminders of the category’s focus. For example, the category initially termed ‘research for guidance’ was renamed ‘instinctive curiosity’ to more effectively capture the feel and meaning of what participants were discussing.

When developing the overarching model from the data, large sheets of paper and post- it notes with category headings were used. This process enabled me to step away from the individual codes and visualise the overall model as it developed. Categories were first grouped into areas of similarity or as having potential relations to each other according to the data. This enabled some categories to be collapsed together. As the

129 model developed, hypotheses arose regarding potential relationships between categories. These were then further explored in the next interviews to ensure that the developing model was truly grounded within the data. Regular meetings with both or individual supervisors occurred to discuss specific categories and the developing model. Several perspectives assisted in reducing researcher bias. In total, twelve supervision meetings involved the specific discussion of the various stages of the analysis.

The decision not to conduct member-checking or member-validation (Seale, 1999) was made in consideration of there not being one sole truth. The seeking of an agreed one truth would have conflicted with the constructivist stance. Indeed, Charmaz (2006) states how GT makes member-checking unnecessary as a way to corroborate conceptual analysis. Furthermore, it would have been likely that not all participants would be involved. This could have biased the results as the member checking would not have been truly representative of the sample.

It was noted that participants appeared to be able to hold seemingly conflicting views. For example, several viewed themselves as recovered, and yet remained on psychiatric medication and admitted an awareness of lifelong vulnerabilities to certain symptomatic experiences. This raised further questions on how recovery or wellness should be defined, and at what point it is reached. Comparisons to physical health conditions suggest that people may hold an awareness for a continued vulnerability to something (for example like having a vulnerability to higher blood pressure, resulting in lifestyle changes or the use of medication to manage this) whilst being able to function well, and ‘live the life that they want.’

4. Overall reflections, clinical implications and conclusions

Throughout both studies, I tried to maintain a reflexive stance to the analysis (Charmaz, 2006). This is defined as the necessity to examine the degree to which researcher’s assumptions, opinions and interests may influence their decisions and interpretations of the data. For example, awareness over my multiple insider and outsider positions and the role these may have had were held (Le Gallais, 2008). The epistemological stance of constructivism corresponds with my personal beliefs that our experiences are influenced by the meanings we attach to them. This is further based on my experiences of working clinically that people’s experiences occur within a wider social context which may act to protect or exacerbate difficulties. Furthermore, my own

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understanding of mental health problems and experience working clinically offering psychological interventions, may have influenced the interviews and analysis. For example, I hold a view that certain aspects of therapy can be highly valuable. Attempts were sought to maintain neutrality on the issues discussed and regular team discussions minimised the influence of bias. A reflective diary and use of ‘memo-ing’ alongside these discussions increased the transparency of these issues (Charmaz, 2006). My developing understanding of qualitative methodology also encouraged me to take ownership of these personal interpretations as constructions of the data (Charmaz, 2006).

Whilst I made attempts to become knowledgeable in the area, my lack of long-term expertise potentially reduced certain biases being projected onto the data. This increases the strength of the findings of both studies which were grounded within the data, but also support other recent studies conclusions (e.g. Joyce et al., 2017; Dodd et al., 2017; Griffiths et al., 2018). I also further attempted to reduce bias by ensuring that the analysis of the empirical paper was completed prior to the data extraction and the analysis phase of the systematic review.

As a Trainee Clinical Psychologist I began the doctorate following prior experiences working across a range of adult mental health services. I initially experienced some anxiety regarding falling into a more therapist style manner during the empirical study interviews. I was aware at how unfamiliar it felt not to be able to reflect and summarise back what I had heard, guiding the person to come to new understandings. I was therefore very conscious of my style within the initial interviews and felt uncomfortable at how this style came across. However, positive feedback from participant’s led me to develop more confidence in this interview style. I was also surprised at how beneficial participants reported having an avenue in which to share their story and be listened to. I believe that holding onto this will be important in my future clinical work. My confidence also grew in undertaking the diagnostic assessments, to which I developed my own style in combining the necessary questions with a more natural follow up of participant’s experiences.

My experiences in undertaking this research has opened my eyes to more critically viewing the setup of mental health support and service provision. Firstly, the systematic review highlighted to me how infrequently the work that I undertake clinically is truly guided by what the client finds most distressing. Whilst the work is often beneficial, it is predominantly guided by the current evidence based models which, as discussed in paper 1 may not facilitate the direct focus of these aspects. This has raised important questions for me, which I now face to battle within the constraints of working in the current NHS. Secondly, the empirical project has offered me new insights into the

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scope in which individuals can go onto make significant changes in their life, and manage their own wellbeing in order to live the life that they want. Whilst I have always held a view of hope and optimism and am driven to assist in improving the mental wellbeing of others, I am aware of working within a context in which society constantly challenges the degree to which this is possible. Speaking directly to those who have seemingly gone beyond what was considered possible by the current diagnostic system was therefore immensely inspiring.

Both studies have highlighted to me the need to go beyond what exists as patient- centered care, to a truly patient-perspective approach (in line with ideas by Carey, 2016). I believe that this attitudinal shift would allow factors experienced as distressing to that individual to become treatment focal points, whilst helping to define the unique pathway for their recovery. I hope that throughout my career as a Clinical Psychologist I will be an advocate for these changes.

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Grande, I., Berk, M., Birmaher, B., Vieta, E., 2016. Bipolar disorder. Lancet. 387, 1561– 1572. https://doi.org/10.1016/S0140-6736(15)00241-X

Griffiths, R., Mansell, W., Edge, D., Tai, S., 2018. Sources of distress in first-episode psychosis: A systematic review and qualitative metasynthesis. Manuscript in preparation.

Jones, S., Mulligan, L.D., Higginson, S., Dunn, G., Morrison, A.P., 2013. The bipolar recovery questionnaire: Psychometric properties of a quantitative measure of recovery experiences in bipolar disorder. J. Affect. Disord. 147, 34–43. https://doi.org/10.1016/j.jad.2012.10.003

Kable, A.K., Pich, J., Maslin-Prothero, S.E., 2012. A structured approach to documenting a search strategy for publication: A 12 step guideline for authors. Nurse Educ. Today. 32, 878–886. https://doi.org/10.1016/j.nedt.2012.02.022

Le Gallais, T., 2008. Wherever I go there I am: reflections on reflexivity and the research stance. Reflective practice, 9 (2), 145-155.

McLeod, J., 2011. Qualitative Research in Counselling and Psychotherapy (2nd Ed). Sage. Publications Ltd, London.

Meade, M. O., Richardson, W. S., 1997. Selecting and appraising studies for a systematic review. Ann Intern Med, 127(7), 531-537. https://doi.org/10.7326/0003-4819-127-7-199710010-00005

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Noblit, G. W., Hare, R. D., 1988. Meta-ethnography: Synthesizing qualitative studies (Vol. 11). Sage. Publications Ltd, London.

Pound, P., Britten N., Morgan, M., Yardley, L., Pope, C., Daker-White, G., Campbell, R., 2005. Resisting medicines: a synthesis of qualitative studies of medicine taking. Soc. Sci. Med. 61, 133-155. https://doi.org/10.1016/j.socscimed.2004.11.063

Russell, S., Browne, J., 2005. Staying well with bipolar disorder. Aus N Z J Psychiatry, 39, 187–193. https://doi.org/http://dx.doi.org/10.1111/j.1440-1614.2005.01542.x

Seale, C.,1999. Quality in qualitative research. Qual. Inq. 5 (4), 465-478. https://doi.org/10.1177/107780049900500402

Thomas, J., Harden, A., 2008. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med. Res. Methodol. 15, 55–58. https://doi.org/10.1186/1471-2288-8-45

Todd, N.J., Jones, S.H., Lobban, F. A., 2012. “Recovery” in Bipolar Disorder: How can service users be supported through a self-management intervention? A qualitative focus group study. J. Ment. Health. 21, 114–126. https://doi.org/10.3109/09638237.2011.621471

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Appendices

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Appendix 1: Author guidelines for the Journal of Affective disorders

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Appendix 2: Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement guidelines

PRISMA-P (Preferred Reporting Items for Systematic review and Meta-Analysis Protocols) 2015 checklist: recommended items to address in a systematic review protocol*

Section and topic Item No Checklist item ADMINISTRATIVE INFORMATION Title: Identification 1a Identify the report as a protocol of a systematic review

Update 1b If the protocol is for an update of a previous systematic review, identify as such Registration 2 If registered, provide the name of the registry (such as PROSPERO) and registration number Authors: Contact 3a Provide name, institutional affiliation, e-mail address of all protocol authors; provide physical mailing address of corresponding author Contributions 3b Describe contributions of protocol authors and identify the guarantor of the review Amendments 4 If the protocol represents an amendment of a previously completed or published protocol, identify as such and list changes; otherwise, state plan for documenting important protocol amendments Support: Sources 5a Indicate sources of financial or other support for the review Sponsor 5b Provide name for the review funder and/or sponsor Role of sponsor or funder 5c Describe roles of funder(s), sponsor(s), and/or institution(s), if any, in developing the protocol

INTRODUCTION Rationale 6 Describe the rationale for the review in the context of what is already known

Objectives 7 Provide an explicit statement of the question(s) the review will address with reference to participants, interventions, comparators, and outcomes (PICO)

METHODS Eligibility criteria 8 Specify the study characteristics (such as PICO, study design, setting, time frame) and report characteristics (such as years considered, language, publication status) to be used as criteria for eligibility for the review Information sources 9 Describe all intended information sources (such as electronic databases, contact with study authors, trial registers or other grey literature sources) with planned dates of coverage

Search strategy 10 Present draft of search strategy to be used for at least one electronic database, including planned limits, such that it could be repeated Study records: Data management 11a Describe the mechanism(s) that will be used to manage records and data throughout the review

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Selection process 11b State the process that will be used for selecting studies (such as two independent reviewers) through each phase of the review (that is, screening, eligibility and inclusion in meta-analysis) Data collection process 11c Describe planned method of extracting data from reports (such as piloting forms, done independently, in duplicate), any processes for obtaining and confirming data from investigators Data items 12 List and define all variables for which data will be sought (such as PICO items, funding sources), any pre-planned data assumptions and simplifications Outcomes and prioritization 13 List and define all outcomes for which data will be sought, including prioritization of main and additional outcomes, with rationale Risk of bias in individual studies 14 Describe anticipated methods for assessing risk of bias of individual studies, including whether this will be done at the outcome or study level, or both; state how this information will be used in data synthesis Data synthesis 15a Describe criteria under which study data will be quantitatively synthesised 15b If data are appropriate for quantitative synthesis, describe planned summary measures, methods of handling data and methods of combining data from studies, including any planned exploration of consistency (such as I2, Kendall’s τ) 15c Describe any proposed additional analyses (such as sensitivity or subgroup analyses, meta-regression) 15d If quantitative synthesis is not appropriate, describe the type of summary planned Meta-bias(es) 16 Specify any planned assessment of meta-bias(es) (such as publication bias across studies, selective reporting within studies) Confidence in cumulative evidence 17 Describe how the strength of the body of evidence will be assessed (such as GRADE) * It is strongly recommended that this checklist be read in conjunction with the PRISMA-P Explanation and Elaboration (cite when available) for important clarification on the items. Amendments to a review protocol should be tracked and dated. The copyright for PRISMA-P (including checklist) is held by the PRISMA-P Group and is distributed under a Creative Commons Attribution Licence 4.0.

From: Shamseer L, Moher D, Clarke M, Ghersi D, Liberati A, Petticrew M, Shekelle P, Stewart L, PRISMA-P Group. Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015: elaboration and explanation. BMJ. 2015 Jan 2;349(jan02 1):g7647.

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Appendix 3: The review protocol registered with PROSPERO International prospective register of systematic reviews

PROSPERO International prospective register of systematic reviews

Systematic review Please complete all mandatory fields below (marked with an asterisk *) and as many of the non-mandatory fields as you can then click Submit to submit your registration. You don't need to complete everything in one go, this record will appear in your My PROSPERO section of the web site and you can continue to edit it until you are ready to submit. Click Show help below or click on the icon to see guidance on completing each section.

1. * Review title.

Give the working title of the review, for example the one used for obtaining funding. Ideally the title should state succinctly the interventions or exposures being reviewed and the associated health or social problems. Where appropriate, the title should use the PI(E)COS structure to contain information on the Participants, Intervention (or Exposure) and Comparison groups, the Outcomes to be measured and Study designs to be included.

Psychological distress in people who have a diagnosis of bipolar disorder: a meta-synthesis of qualitative literature

2. Original language title.

For reviews in languages other than English, this field should be used to enter the title in the language of the review. This will be displayed together with the English language title.

3. * Anticipated or actual start date.

Give the date when the systematic review commenced, or is expected to commence.

29/05/2017

4. * Anticipated completion date.

Give the date by which the review is expected to be completed.

27/04/2018

5. * Stage of review at time of this submission.

Indicate the stage of progress of the review by ticking the relevant Started and Completed boxes. Additional information may be added in the free text box provided. Please note: Reviews that have progressed beyond the point of completing data extraction at the time of initial registration are not eligible for inclusion in PROSPERO. Should evidence of incorrect status and/or completion date being supplied at the time of submission come to light, the content of the PROSPERO record will be removed leaving only the title and named contact details and a statement that inaccuracies in the stage of the review date had been identified. This field should be updated when any amendments are made to a published record and on completion and publication of the review.

The review has not yet started: Yes

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Review stage Started Completed Preliminary searches No No

Piloting of the study selection process No No

Formal screening of search results against eligibility criteria No No

Data extraction No No

Risk of bias (quality) assessment No No

Data analysis No No Provide any other relevant information about the stage of the review here (e.g. Funded proposal, protocol not yet finalised).

6. * Named contact. The named contact acts as the guarantor for the accuracy of the information presented in the register record. Ms Warwick

Email salutation (e.g. "Dr Smith" or "Joanne") for correspondence:

7. * Named contact email. Give the electronic mail address of the named contact. [email protected]

8. Named contact address Give the full postal address for the named contact. Section for Clinical and Health Psychology, 2nd Floor, Zochonis Building, University of Manchester, Oxford Road, Manchester, M13 9PL

9. Named contact phone number. Give the telephone number for the named contact, including international dialling code. +44 (0)747 094 9629

10. * Organisational affiliation of the review. Full title of the organisational affiliations for this review and website address if available. This field may be completed as 'None' if the review is not affiliated to any organisation. University of Manchester

Organisation web address:

11. Review team members and their organisational affiliations. Give the title, first name, last name and the organisational affiliations of each member of the review team. Affiliation refers to groups or organisations to which review team members belong. Ms Helen Warwick. University of Manchester Dr Warren Mansell. University of Manchester Dr Sara Tai. University of Manchester

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PROSPERO International prospective register of systematic reviews

12. * Funding sources/sponsors.

Give details of the individuals, organizations, groups or other legal entities who take responsibility for initiating, managing, sponsoring and/or financing the review. Include any unique identification numbers assigned to the review by the individuals or bodies listed.

Ms Helen Warwick, University of Manchester; Dr Sara Tai, University of Manchester; Dr Warren Mansell, University of Manchester.

13. * Conflicts of interest.

List any conditions that could lead to actual or perceived undue influence on judgements concerning the main topic investigated in the review.

None

14. Collaborators.

Give the name and affiliation of any individuals or organisations who are working on the review but who are not listed as review team members.

15. * Review question.

State the question(s) to be addressed by the review, clearly and precisely. Review questions may be specific or broad. It may be appropriate to break very broad questions down into a series of related more specific questions. Questions may be framed or refined using PI(E)COS where relevant.

What do people who have had a diagnosis of bipolar disorder say causes them distress?

16. * Searches.

Give details of the sources to be searched, search dates (from and to), and any restrictions (e.g. language or publication period). The full search strategy is not required, but may be supplied as a link or attachment.

To identify personal accounts of service users distress, the following electronic databases will be searched: Embase, Ovid MEDLINE, PsycINFO, Cochrane Library, PubMed. It is anticipated that this will enable a thorough search of the relevant data. No start date will be specified to ensure no earlier studies are overlooked. When searching, MeSH headings will be used to generate search terms. Two or three categories of search terms will be used: 'bipolar disorder' terms, 'service user' terms, and 'qualitative research' terms. To separate categories, the Boolean operator 'AND' will be used, whilst 'OR' will be used within them. The below search stages are informed by the three-step process of study selection in meta-synthesis (Meade & Richardson, 1997) in which overall search results are reduced via their title, abstract and then full paper. Search stages: Stage 1: Search the above electronic databases using the three described categories of search terms. Stage 2: HW to go through the results and deduplicate. Stage 3: All remaining articles (titles and abstracts) will be entered into Mendeley Desktop (version 1.16.1) and screened by HW against the inclusion and exclusion criteria. Any uncertainties will be discussed with supervisor’s WM and ST. Those not meeting inclusion criteria will be excluded at this stage. Stage 4: Full texts of those remaining will be further screened by HW, and those not meeting inclusion criteria will be excluded. Again, any uncertainty will be discussed with WM and ST. Stage 5: Articles will not be excluded based on quality, however, each will be assessed for their quality ratings by HW (assisted by WM and ST) using the CASP (2014) Qualitative Research Checklist. Stage 6: Initial coding using a qualitative methodology (thematic synthesis) will identify relevant data segments within included papers. Stage 7: To then draw out themes, further detailed coding will be conducted across all included papers

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17. URL to search strategy.

Give a link to the search strategy or an example of a search strategy for a specific database if available (including the keywords that will be used in the search strategies).

Alternatively, upload your search strategy to CRD in pdf format. Please note that by doing so you are consenting to the file being made publicly accessible.

Do not make this file publicly available until the review is complete

18. * Condition or domain being studied.

Give a short description of the disease, condition or healthcare domain being studied. This could include health and wellbeing outcomes.

Bipolar disorder (any)

19. * Participants/population.

Give summary criteria for the participants or populations being studied by the review. The preferred format includes details of both inclusion and exclusion criteria.

Inclusion criteria: - Participants who have met diagnostic criteria for a diagnosis of bipolar disorder Exclusion criteria: - Participants with a known organic basis for their symptoms

20. * Intervention(s), exposure(s).

Give full and clear descriptions or definitions of the nature of the interventions or the exposures to be reviewed.

First person accounts of distress reported in the qualitative literature by people who have experienced symptoms of bipolar disorder.

21. * Comparator(s)/control.

Where relevant, give details of the alternatives against which the main subject/topic of the review will be compared (e.g. another intervention or a non-exposed control group). The preferred format includes details of both inclusion and exclusion criteria.

None.

22. * Types of study to be included.

Give details of the types of study (study designs) eligible for inclusion in the review. If there are no restrictions on the types of study design eligible for inclusion, or certain study types are excluded, this should be stated. The preferred format includes details of both inclusion and exclusion criteria.

Inclusion criteria:1. Qualitative research 2. Published in English language peer-reviewed journal3. Contains first-person accounts of distress reported by individuals who had a diagnosis of bipolar disorderExclusion criteria:1. Quantitative research2. Contains only theoretical or observational data.3. Research studies on experiences of bipolar disorder symptoms where service users have an organic basis for their symptoms.4. Case studies or single case designs

23. Context.

Give summary details of the setting and other relevant characteristics which help define the inclusion or exclusion criteria.

This review will include research from any relevant context providing it contains first-person accounts of distress reported by people who have experienced symptoms of and have had a diagnosis of bipolar disorder

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24. * Primary outcome(s). Give the pre-specified primary (most important) outcomes of the review, including details of how the outcome is defined and measured and when these measurement are made, if these are part of the review inclusion criteria. This review aims to identify and synthesise first-person accounts in the qualitative literature of distress reported by people with a diagnosis of bipolar disorder (any).

Timing and effect measures

25. * Secondary outcome(s). List the pre-specified secondary (additional) outcomes of the review, with a similar level of detail to that required for primary outcomes. Where there are no secondary outcomes please state ‘None’ or ‘Not applicable’ as appropriate to the review None.

Timing and effect measures

26. Data extraction (selection and coding). Give the procedure for selecting studies for the review and extracting data, including the number of researchers involved and how discrepancies will be resolved. List the data to be extracted. All full text articles meeting criteria will be uploaded to NVivo (version 11) software. Study details will be collected using a standardised form. Details to be collected include: author(s), date of study, study title, study methodology/design, sample characteristics (age, gender, comorbidities), how the diagnosis of bipolar was made/confirmed and themes of distress identified. Any first-person accounts of distress from service users who have experienced symptoms of bipolar disorder and have had a diagnosis of this disorder (formal or self report), will be extracted and included in the review.

27. * Risk of bias (quality) assessment. State whether and how risk of bias will be assessed (including the number of researchers involved and how discrepancies will be resolved), how the quality of individual studies will be assessed, and whether and how this will influence the planned synthesis. Eligibility screening will be initially conducted by HW. Where there is any uncertainty about eligibility, discussions within the research team (ST, WM) will determine the outcome. A consort diagram will be used to demonstrate the process and inclusion/elimination of studies through, giving the inclusion or exclusion rationale. The CASP Qualitative Research Checklist (Critical Appraisal Skills Programme, 2014) will be used to evaluate the quality of all included studies. Studies will not be excluded on the basis of quality due to ensure data isn’t missed. However, quality ratings will be discussed and findings examined accordingly. This strategy will assist in identifying potential gaps in the literature if topics have previously only been covered by studies rated as ‘poor’. Furthermore, whilst no exclusion criteria will exist on how the diagnosis of bipolar disorder was made or confirmed, the reliability of this will also be reviewed and discussed where relevant.

28. * Strategy for data synthesis. Give the planned general approach to synthesis, e.g. whether aggregate or individual participant data will be used and whether a quantitative or narrative (descriptive) synthesis is planned. It is acceptable to state that a quantitative synthesis will be used if the included studies are sufficiently homogenous. A thematic synthesis in line with Thomas and Harden (2008) methodology will be used to synthesise relevant data. NVivo 11 software will be used to assist with the analysis.

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29. * Analysis of subgroups or subsets. Give details of any plans for the separate presentation, exploration or analysis of different types of participants (e.g. by age, disease status, ethnicity, socioeconomic status, presence or absence or comorbidities); different types of intervention (e.g. drug dose, presence or absence of particular components of intervention); different settings (e.g. country, acute or primary care sector, professional or family care); or different types of study (e.g. randomised or non-randomised). None planned.

30. * Type and method of review. Select the type of review and the review method from the lists below. Select the health area(s) of interest for your review. Type of review Cost effectiveness No

Diagnostic No

Epidemiologic No

Individual patient data (IPD) meta-analysis No

Intervention No

Meta-analysis No

Methodology No

Network meta-analysis No

Pre-clinical No

Prevention No

Prognostic No

Prospective meta-analysis (PMA) No

Qualitative synthesis No

Review of reviews No

Service delivery No

Systematic review Yes

Other No

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Health area of the review Alcohol/substance misuse/abuse No

Blood and immune system No

Cancer No

Cardiovascular No

Care of the elderly No

Child health No

Complementary therapies No

Crime and justice No

Dental No

Digestive system No

Ear, nose and throat No

Education No

Endocrine and metabolic disorders No

Eye disorders No

General interest No

Genetics No

Health inequalities/health equity No

Infections and infestations No

International development No

Mental health and behavioural conditions No

Musculoskeletal No

Neurological No

Nursing No

Obstetrics and gynaecology No

Oral health No

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Palliative care No

Perioperative care No

Physiotherapy No

Pregnancy and childbirth No

Public health (including social determinants of health) No

Rehabilitation No

Respiratory disorders No

Service delivery No

Skin disorders No

Social care No

Surgery No

Tropical Medicine No

Urological No

Wounds, injuries and accidents No

Violence and abuse No

31. Language. Select each language individually to add it to the list below, use the bin icon to remove any added in error. English There is an English language summary.

32. Country. Select the country in which the review is being carried out from the drop down list. For multi-national collaborations select all the countries involved. England

33. Other registration details. Give the name of any organisation where the systematic review title or protocol is registered (such as with The Campbell Collaboration, or The Joanna Briggs Institute) together with any unique identification number assigned. (N.B. Registration details for Cochrane protocols will be automatically entered). If extracted data will be stored and made available through a repository such as the Systematic Review Data Repository (SRDR), details and a link should be included here. If none, leave blank.

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34. Reference and/or URL for published protocol. Give the citation and link for the published protocol, if there is one

Give the link to the published protocol.

Alternatively, upload your published protocol to CRD in pdf format. Please note that by doing so you are consenting to the file being made publicly accessible. Yes I give permission for this file to be made publicly available Please note that the information required in the PROSPERO registration form must be completed in full even if access to a protocol is given.

35. Dissemination plans. Give brief details of plans for communicating essential messages from the review to the appropriate audiences. This review will form part of the main researchers doctoral thesis and is also aimed to be published in a relevant peer reviewed journal. Findings may also be disseminated through conference presentations.

Do you intend to publish the review on completion? Yes

36. Keywords. Give words or phrases that best describe the review. Separate keywords with a semicolon or new line. Keywords will help users find the review in the Register (the words do not appear in the public record but are included in searches). Be as specific and precise as possible. Avoid acronyms and abbreviations unless these are in wide use. Bipolar Disorder distress systematic review service user first person accounts

37. Details of any existing review of the same topic by the same authors. Give details of earlier versions of the systematic review if an update of an existing review is being registered, including full bibliographic reference if possible.

38. * Current review status. Review status should be updated when the review is completed and when it is published. Please provide anticipated publication date Review_Ongoing

39. Any additional information. Provide any other information the review team feel is relevant to the registration of the review.

40. Details of final report/publication(s). This field should be left empty until details of the completed review are available.

Give the link to the published review.

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164 Appendix 4: The CASP Qualitative Research Checklist for qualitative literature

10 questions to help you make sense of qualitative research

How to use this appraisal tool

Three broad issues need to be considered when appraising a qualitative study:

Are the results of the study valid? (Section A) What are the results? (Section B) Will the results help locally? (Section C)

The 10 questions on the following pages are designed to help you think about these issues systematically. The first two questions are screening questions and can be answered quickly. If the answer to both is “yes”, it is worth proceeding with the remaining questions.

There is some degree of overlap between the questions, you are asked to record a “yes”, “no” or “can’t tell” to most of the questions. A number of italicised prompts are given after each question. These are designed to remind you why the question is important. Record your reasons for your answers in the spaces provided.

These checklists were designed to be used as educational pedagogic tools, as part of a workshop setting, therefore we do not suggest a scoring system. The core CASP checklists (randomised controlled trial & systematic review) were based on JAMA 'Users’ guides to the medical literature 1994 (adapted from Guyatt GH, Sackett DL, and Cook DJ), and piloted with health care practitioners.

For each new checklist a group of experts were assembled to develop and pilot the checklist and the workshop format with which it would be used. Over the years overall adjustments have been made to the format, but a recent survey of checklist users reiterated that the basic format continues to be useful and appropriate.

Referencing: we recommend using the Harvard style citation, i.e.:

Critical Appraisal Skills Programme (2017). CASP (insert name of checklist i.e. Qualitative Research) Checklist. [online] Available at: URL. Accessed: Date Accessed.

©CASP this work is licensed under the Creative Commons Attribution – Non Commercial-Share A like. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-sa/3.0/ www.casp-uk.net

©Critical Appraisal Skills Programme (CASP) Qualitative Research Checklist 13.03.17 1

165 Screening Questions

1. Was there a clear statement of the aims Yes Can’t tell No of the research? HINT: Consider What was the goal of the research? Why it was thought important? Its relevance

2. Is a qualitative methodology appropriate? Yes Can’t tell No

HINT: Consider If the research seeks to interpret or illuminate the actions and/or subjective experiences of research participants Is qualitative research the right methodology for addressing the research goal?

Is it worth continuing?

Detailed questions 3. Was the research design appropriate to Yes Can’t tell No address the aims of the research?

HINT: Consider If the researcher has justified the research design (E.g. have they discussed how they decided which method to use)?

©Critical Appraisal Skills Programme (CASP) Qualitative Research Checklist 13.03.17 2

166 4. Was the recruitment strategy appropriate to the Yes Can’t tell No aims of the research?

HINT: Consider If the researcher has explained how the participants were selected If they explained why the participants they selected were the most appropriate to provide access to the type of knowledge sought by the study If there are any discussions around recruitment (e.g. why some people chose not to take part)

5. Was the data collected in a way that addressed Yes Can’t tell No the research issue?

HINT: Consider If the setting for data collection was justified If it is clear how data were collected (e.g. focus group, semi-structured interview etc.) If the researcher has justified the methods chosen If the researcher has made the methods explicit (e.g. for interview method, is there an indication of how interviews were conducted, or did they use a topic guide)? If methods were modified during the study. If so, has the researcher explained how and why? If the form of data is clear (e.g. tape recordings, video material, notes etc) If the researcher has discussed saturation of data

6. Has the relationship between researcher and Yes Can’t tell No participants been adequately considered?

HINT: Consider If the researcher critically examined their own role, potential bias and influence during (a) Formulation of the research questions (b) Data collection, including sample recruitment and choice of location How the researcher responded to events during the study and whether they considered the implications of any changes in the research design

©Critical Appraisal Skills Programme (CASP) Qualitative Research Checklist 13.03.17 3

167 7. Have ethical issues been taken into consideration? Yes Can’t tell No

HINT: Consider If there are sufficient details of how the research was explained to participants for the reader to assess whether ethical standards were maintained If the researcher has discussed issues raised by the study (e.g. issues around informed consent or confidentiality or how they have handled the effects of the study on the participants during and after the study) If approval has been sought from the ethics committee

8. Was the data analysis sufficiently rigorous? Yes Can’t tell No

HINT: Consider

If there is an in-depth description of the analysis process If thematic analysis is used. If so, is it clear how the categories/themes were derived from the data? Whether the researcher explains how the data presented were selected from the original sample to demonstrate the analysis process If sufficient data are presented to support the findings To what extent contradictory data are taken into account Whether the researcher critically examined their own role, potential bias and influence during analysis and selection of data for presentation

©Critical Appraisal Skills Programme (CASP) Qualitative Research Checklist 13.03.17 4

168 9. Is there a clear statement of findings? Yes Can’t tell No

HINT: Consider

If the findings are explicit If there is adequate discussion of the evidence both for and against the researchers arguments If the researcher has discussed the credibility of their findings (e.g. triangulation, respondent validation, more than one analyst) If the findings are discussed in relation to the original research question

10. How valuable is the research?

HINT: Consider

If the researcher discusses the contribution the study makes to existing knowledge or understanding e.g. do they consider the findings in relation to current practice or policy?, or relevant research-based literature? If they identify new areas where research is necessary If the researchers have discussed whether or how the findings can be transferred to other populations or considered other ways the research may be used

©Critical Appraisal Skills Programme (CASP) Qualitative Research Checklist 13.03.17 5

169 Appendix 5: A table summarising which included papers contained codes within each developed theme

Themes

Study Diagnosis Loss Uncertainty Relationships Threat Stigma Fear of relapse

Pollack & ✓ ✓ ✓ ✓ ✓ ✓ Aponte. USA 2001

Jönsson, ✓ ✓ ✓ ✓ ✓ ✓ Wijk, Skärsäter, & Danielson. Sweden 2008

Venkataraman ✓ ✓ ✓ ✓ & Ackerson. USA 2008

Inder, Crowe, ✓ ✓ ✓ ✓ ✓ ✓ Moor, Luty, Carter & Joyce. New Zealand 2008

Wilson & ✓ ✓ ✓ ✓ ✓ ✓ Crowe. New Zealand 2009

170 Rusner, ✓ ✓ ✓ ✓ ✓ ✓ ✓ Carlsson, Brunt & Nystrom. Sweden 2009

Mansell, ✓ ✓ ✓ ✓ ✓ ✓ ✓ Powell, Pedley, Thomas & Jones. UK 2010

Inder, Crowe, ✓ ✓ ✓ ✓ ✓ Joyce, Moor, Carter & Luty. New Zealand 2010

Wang & ✓ ✓ ✓ ✓ ✓ ✓ ✓ Henning. New Zealand 2010

Wright, ✓ ✓ ✓ ✓ ✓ Armstrong, Taylor & Dean. UK 2012

171 Veseth, ✓ ✓ ✓ ✓ ✓ Binder, Borg & Davidson. Norway 2012

Crowe, Inder, ✓ ✓ ✓ ✓ ✓ ✓ Carlyle, Wilson, Whitehead, Panckhurst, O'brien & Joyce. New Zealand 2012

Fletcher, ✓ ✓ ✓ ✓ ✓ ✓ ✓ Parker & Manicavasagar Australia 2013

Russell & ✓ ✓ ✓ ✓ Moss. UK 2013

Borg, ✓ ✓ ✓ ✓ ✓ Veseth, Binder & Topor. Norway 2013

172 Tjoflat & ✓ ✓ ✓ ✓ ✓ Ramvi. Norway 2013

Fernandez, ✓ ✓ ✓ ✓ ✓ ✓ ✓ Breen & Simpson. Australia 2014

Mortensen, ✓ ✓ ✓ ✓ ✓ ✓ ✓ Vinberg, Mortensen, Jorgensen, Eberhard. Denmark 2015

Cappleman, ✓ ✓ ✓ ✓ ✓ ✓ Smith & Lobban. UK 2015

Van den Heuvel, ✓ ✓ ✓ ✓ ✓ ✓ ✓ Goossens, Terlouw, Van Achterberg & Schoonhoven The Netherlands 2015

173 ✓ ✓ ✓ ✓ ✓ Owen, Gooding, Dempsey & Jones. UK 2015

Granek, ✓ ✓ ✓ ✓ ✓ ✓ ✓ Danan, Bersudsky, & Osher, Israel 2016

Dolman, ✓ ✓ ✓ ✓ ✓ ✓ Jones & Howard. UK 2016

Blixen, Levin, ✓ ✓ ✓ ✓ ✓ ✓ ✓ Cassidy, Perzynski & Sajatovic. USA 2016 20 24 24 20 22 19 14

174 Appendix 6: A table with further examples of quotations for each theme and subtheme for the systematic review

1. Diagnosis

1a. Difficulty My wife would probably tell you that I won’t admit it . . . and I think it’s like identifying with that with many forms of mental illness, you don’t want to admit that you the diagnosis have such an illness . . . that’s my opinion (Jönsson)

Denial, anger and despair, when related to identifying with the diagnosis of bipolar disorder, led to non-adherence to treatment and recurrence of the illness, compounded with other serious complications such as suicidal inclinations (Pollack)

It’s just, I don’t know, I still find that kind of. . . I do still feel a little bit sceptical about me having it, like I think, you know, that it’s just my personality and that other people must have it but I . . . it’s just me (Inder, 2008)

I was opposing the diagnosis . . . and against ‘being institutionalised.’. . . You know everyone is outside and I am here inside. . . . I did not realise or acknowledged being ill . . . for the whole two years. . . . I was just angry and rebellious about being hospitalised against my will (Van den Heuvel)

I experienced a full-blown manic episode and ended up being institutionalised with this label. ‘Miss, you have BD.’ 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)

So I almost had to realize that the problem was bigger than I wanted it to be, and that I unfortunately needed to get rid of those periods. Painfully enough (Veseth)

1b. Medication 1bi.Lack of benefit from medication:

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)

Participants wondering whether coming off medication would make them feel better or worse. Most participants on medication expressed a desire to come off it one day (Mansell)

1bii. Side effects of medication: Participants frequently described side-effects changing their view about themselves in ways they found undesirable, for example having a sense of themselves as being hard working and productive, but feeling unable to achieve as much at work due to feelings of fatigue. (Cappleman)

I would like it all just go away and get back to being relatively normal I don’t like medication it changes me from being me, things taste different, I act different... (Crowe)

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, 2010)

175 Many participants expressed conﬂict over whether the medication (mainly lithium) was helpful or not, as negative side-effects were mentioned, such as ‘dulling of the senses’, and weight gain (Mansell)

1biii.Needing to rely on medication: Well just remembering things that happened to me in the past when I didn’t take my meds and reverted to taking drugs and not wanting to get caught up in the madness again (Blixen)

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)

It was my own fault for taking myself off [medication] the other time but I wanted to test it out really (Crowe)

1c. Hearing about I was twenty-three and I was going to a support group with fairly chronic others people with really difficult experiences, so that was not helpful experiences (Fernandez)

Hayley (who had never used medication) was concerned about side- effects because of others stories of the impacts medication had on them (Cappleman)

Some reported searching on the internet and finding inaccurate accounts which had alarmed them and added to their anxiety (Dolman)

1d. Lack of hope [Because of] my illness, I haven’t worked for years … I come from quite a secure background and … I wanted to re-create that … [but] due to my illness … I doubt … I could manage it (Dolman)

The fear is that your mood might soar or that you might become depressed and unable to do what you have to. . . you don’t dare to have long-term goals and dreams because you know that you are totally chaotic. You do not dare to dream. (Jönsson)

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)

Hispanic man who expressed acceptance of the disorder, but also believed that it was getting worse and did not see an end other than suicide (Pollack)

Reﬂections also opened a cynical perspective such that regardless of what preventive measures were taken, a recurrent episode was inevitable (Van den Heuvel)

1e. Long term All the participants described the managing the severity of the ﬂuctuating nature of bipolar and enduring nature of the symptoms of bipolar disorder. This then disorder and the impacted on how they perceived themselves (Crowe) effort required My number one thing to do…get out of the house…have contact with people I don’t know…interact…it’s like…chewing glass…but I make myself do it (Fletcher)

176 It feels like it’s not going to end, it’s more something I have to learn to live with and the people in my environment need to learn to understand.. . . I have to think of how to adapt my daily routine. I can’t plan hundreds of things to do. I need to have some hours free every day, and if I have to do too much one week I become exhausted by the weekend and am unable to do what I planned (Jönsson)

It means being involved in an ongoing struggle to keep contact with oneself and to be able to have a life that corresponds to how one perceives oneself to be (Rusner)

2. Loss

2a. Loss of It is tough. When you feel you’re run up and down. You feel you never Control can stay in the middle and kind of relax for a while. You’re running up and down. It is a terrible illness actually (Borg)

I’m a person that likes to be in control of what I’m doing and I don’t like it if I don’t, or when I look back and see I wasn’t. It gets at me because I like to be as I say I like to be in control of what I’m doing, and it upsets me [when manic] and it upsets me when I’m depressed as well because I feel that I’m not in control of what’s going on (Crowe)

The core theme that emerged in relation to the impact of bipolar disorder on the participants’ lives was their feeling out of control. This theme was expressed as feeling overwhelmed, a loss of autonomy and feeling ﬂawed (Crowe)

I’ve tried to control it because I have lost all control of my life and had such a bad experience but shit you know, you know I totally lost control of my body as well such a yeah, but to go and totally lose control of your mind and body I’ve had that and all that stuff. I have this real need to take control (Crowe)

As one participant explained, the patient role meant having little control over her treatment and resulted in feelings of powerlessness (Fernandez)

Participants described a “strange takeover” and loss of control resulting from the sporadic and cyclical mood changes of BD and the inability to prevent them (Fernandez)

It releases time capsules and then you just, next thing you know it’s just an explosion. And that’s the only thing I can say (Pollack)

It’s like a tornado or a hurricane, an awful thing that comes and take you and you can’t do anything. You’re inside the tornado, and you scream because it’s got you. It takes over your thoughts. The mixed state is when you get really insane, when you get admitted to hospital, when you’re out of control (Mortensen)

This kind of explosion breaks down the normal ways of controlling oneself and navigating in life and leads to emotional chaos and thus control and contact with reality and oneself is lost (Rusner)

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)

177

Cos I’m just totally ruled by my moods. (Inder, 2008)

2b. Loss of [I am] quite strongly resistant to increasing medication dosages, I feel autonomy and you know a part of me feels like I am taking [medication] in protest. I am confidence absolutely seething; it feels like surrendering more autonomy, not regaining it (Crowe)

The issue of medication adherence and the associated sense of loss of autonomy were frequently described as a frustration and something that was actively resisted (Crowe)

I have felt less trust in myself. I felt I did not have as much confidence in different things that I did. (Fernandez)

It is very difficult, particularly when you have been episodic many times. After a while you begin to doubt yourself and you lose that kind of tenacity and nerve to do things (Fernandez)

I’ve felt well because of that, I’ve not had any responsibility, they’ve not given me any groups of children to take care of. If I don’t come to work one day then there’s no disaster, I don’t cause anyone else any trouble. To start work with all that it entails, I can’t manage that, I can’t go out and sell myself. I haven’t the self-confidence or the energy to do that (Rusner)

Participants also indicated that the traditional medical model (i.e., doctor prescribes and tells patients to take the medication and attend clinic appointments) has not been helpful in engaging them in processing the dynamics surrounding the diagnosis (Pollack)

Yes, because I didn’t want to, and to this day, I have to say that I . . . . The velocity and intensity that these periods represent, it is seductive in many ways. And I’m still not capable of stopping myself if it happens; I think someone else or the medications have to do it. And I’m not sure whether I would have the willpower to make it stop (Veseth)

2c. Loss of work As well as the positive sides of having a job, several of the participants dwelled on the contrasts in terms of how a longer, shorter or present unemployment situation caused distress for both them and their family (Borg)

I saw it all as bad, because I was out of control. Yeah, not good, and it was the end of my career (Russell)

Then many times it [the illness] has put a stop to my career. . . and maybe I have not achieved as much as I could have, had I been well. . . you just have accept to do work that is not too difﬁcult (Jönsson)

She now felt ‘cut out of society’ and lacked the social recognition associated with work (Mortensen)

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)

2d. Loss of sense Until I’m actually fine, like become stable for a long period of time, I won’t of purpose get to see who I am and my potential (Inder, 2008)

178 I do not really care about studying in the depression. It does not mean anything for me anymore. I do not know why I am doing it (Fernandez)

I was a drop-out. I did not complete any of the degrees [I started] (Fernandez)

2e. Loss of social I isolate a lot. I try to stay away from people; basically just stay in my connection room. I just lock my doors and stay in the house all the time. (Blixen)

Having BD also influenced the participants’ willingness to establish connections, with one participant expressing a conscious decision not to let others get close (Inder, 2008)

I am so depressed, I am deprived of energy and I just sit there in the chair or sofa, and it is as if we are somehow not together; you know, it is as if I am in my own world, pondering on things and then the children wonder why you are so distant (Tjoflat)

…the latent message was one of dissatisfaction with the quality of their lives, feeling disconnected from others, and not being able to fulﬁll their life dreams (Pollack)

2f. Loss of sense I don’t feel so depressed now because of the drugs that I take. I don’t of Pleasure feel either really happy or really bored (Tjoflat)

That’s the consequence of being well treated; you lose all the fun too. My optimal stability has come with the price of my social life. You are being cut out of society and, in a way, so is your family too (Mortensen)

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 just, you know, did the grocery shopping, did the cooking, took care of their needs, but I wasn’t happy. 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)

Almost half of the sample reported that any positive effects of exercise diminish when a person experiences severe mania or depression (Wright)

2g. Loss of sense As one participant explained, the patient role meant having little control of identity over her treatment and resulted in feelings of powerlessness (Fernandez)

I was a person I did not want to be. I did things I would not normally do (Fernandez)

The participants’ descriptions of themselves reflected self-definitions shaped by their mood and other aspects of their illness, leading to experiences of confusion (Inder, 2008)

The majority of participants, however, were primarily concerned by others deﬁning them by their illness (Mansell)

179 I found a poster in a magazine and I stuck it in my wardrobe. There is a girl with a small hump on her back with a little bit of downy hair; she has got long hair and big eyes. The poster reads, “I am not like other girls”…and I think that is how I see myself. I feel that I might be even a subtype of the human species basically. Not in a bad way—just that I am different.…In wanting to be like everyone else I had missed that there was maybe something special about me (Fernandez)

Like I actually don’t know who I am. There’s a few kind of core things, but it’s almost like my personality was grappling with my mood (Inder, 2008)

Participants spoke of the diagnosis of bipolar disorder as being such an injury to their self-identity (Pollack)

BD pervades the individual’s whole life. The illness is intertwined with one’s whole being and indivisible from one’s identity (Rusner)

2h. Loss of Participant believed that she could not pursue a PhD because she did functioning not have “the longevity of thought” and “continuity of endeavor” to complete a doctoral course (Fernandez)

I know I have to take care of myself.. . I have to sleep at night. I can’t allow myself to run around and not to sleep or things like that because it affects me right away. .. . I am trapped in a reality that I can’t allow myself to live any other way (Granek)

[Bipolar disorder] affected me. I wasn’t able to pass the driving exam. I am very jealous of women who can drive and I think I didn’t pass because I couldn’t learn (Granek)

One participant considered BD to have globally stuffed up his life (Inder, 2008)

I mean I can't always function at the level I'd like to (Wright)

Participants described how previous attempts at controlling their lives had been unsuccessful be cause of the impact of the symptoms (Crowe)

Curtailing activities that may otherwise be seen as productive or pleasurable was often described as a difﬁcult process that required a great deal of willpower, which highlights the conﬂict and ambivalence involved (Mansell)

Two participants reported that studying became difficult because they were no longer deriving pleasure or purpose (Fernandez)

You read and you write and you prepare constantly for the class. But you’re working at 0.1% of your capacity. All you’re doing is like an empty machine: oil is gone, everything’s gone and you’re just burning… I totally imploded like a black hole in that period… and then I bounced back. I exploded instead, and it’s much the same energy. All I can say is that I hate nothing more on this earth than mixed state (Mortensen)

…how should I describe it ... I haven’t had the life that I thought I would have when I was younger is one way of saying it. Had or perhaps not been able to get that life because of how I’ve felt. I’ve been on the way to reaching some of my goals but then there’s come nothing of it and it’s not good for your self-esteem, you hate yourself also (Rusner)

180 3. Uncertainty

3a. Not realising It was very scary, as it felt just like a speeding train was running in my what was wrong head day and night. But I didn’t realize that I was ill, I just thought I was very stressed.(Borg)

I knew I had a problem from an early age…feeling sooo different (Fletcher)

The participants expressed frustration with the process of diagnosis particularly in relation to getting multiple diagnoses over time (Inder, 2010)

I mean I’ve been tentatively labelled with pretty much everything and I mean they ﬁrst diagnosed me as having schizophrenia and then they said multiple personality disorder, and then they said mood disorder and basically I’ve had everything (Inder, 2010)

I didn’t know they were manic episodes. So when he said ‘‘have you ever been high’’ I thought to myself ‘‘no’’ but then it wasn’t really explained to me what that was (Inder, 2010)

To begin with I thought I had some sort of weird disease, like some sort of fungus infection or something inside my intestines (Inder,2010)

3b. Uncertainty Participants felt uncertain about their ability to manage the illness, which and ambivalence could lead to avoidance of thinking of it when feeling well (Jönsson)

I don’t know what I am and it comes through, and people ask me what I want to do and I struggle with what I really want to be and do (Inder, 2008)

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,2010)

I really don’t know because it is been so long, and whether it’s still there? Maybe? And if I didn’t get enough sleep for a few days, I might have the same problem (Inder, 2010)

It’s a difﬁcult area when to reveal, and when not to or whether to reveal at work as well (Mansell)

I think that it’s a strange illness in that one actually exaggerates everything. One exaggerates to the utmost. . . you push everything too far, like at training and. . . they had to introduce rules at the gym because of me. That you could not do more than one spinning session at a time. So you could not stay on the cycle and continue on for the next session and then the next one. . . but at the same time I don’t know what is normal (Jönsson)

I feel guilty a lot of the time because I get irritable with them, I get impatient and I don’t know whether that is my illness or whether that is normal at times, it is hard to work out (Wilson)

181

3c. Lack of At the beginning of the illness, the persons had difﬁculty understanding understanding, their feelings and what was happening (Jönsson) insight and information Several participants reported that not feeling understood or acknowledged was a trigger for suicidal thoughts (Owen)

It means in one sense not knowing that one lives with what is labelled as BD though in another sense knowing it, which can create chaos and confusion (Rusner)

‘True’ versus medicated self; ‘and I don’t know whether that’s the normal me, or whether it’s the medicated me, which is on the depressed side (Mansell)

those who were not referred to a specialist felt let down by the lack of information available from professionals they consulted for advice (Dolman)

I did not really understand what I had; nobody really told me that I had anything, really. They gave me pills to take [but] they did not explain what they were for (Ferndandez)

I had a serious diagnosis, but I didn’t understand it, and perhaps neither did my therapists or my doctor. I was alone with my children, I was manic and psychotic and we didn’t get any help. Had they understood it and had my children been in kindergarten, it would have helped, both for my children and me ... it’s quite as simple as that (Tjoflat)

3d. Experiences Their explanation reﬂected their confused feelings towards medication. of conflict and On the one hand, medication is the most effective way to deal with dilemmas symptoms. On the other hand, medication is not an ideal treatment given its side effects and inability to cure the illness (Wang)

This intensity is experienced both as a gift and as a weakness (Rusner)

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)

These experiences demonstrate that although the patient identity might provide hope for the treatment of BD, it can also result in feelings of helplessness and distress (Fernandez)

Weighing the chances of damaging their unborn child against the possibility of becoming ill when medication-free was described as extremely difficult and provoked much anxiety (Dolman)

[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. It feels like my moods are out of my control and the only way I can get it under control is by letting go of control (Crowe)

3e. Not knowing Whenever I would get that surge, agitation or panic, like I don’t know what to do to help what to do with it so I’d go and like cut my arms up and things like that self (Inder, 2010)

Daily life with bipolar disorders can take its toll and following the participants’ stories there is rarely a simple solution (Borg)

182 Patients spoke about their responsibility for their own self-care as having a major impact on their lives (Granek)

The limitations imposed by the illness and not knowing how to manage it or how to obtain help led to uncertainty (Jönsson)

3f. Difficulty Maintaining a work-rest balance seem to be an individual matter, finding a balance according to the lived experiences of the 13 participants. Some expressed great concern and avoided situations of working too much (Borg)

It is difﬁcult to ﬁnd a balance and have enough strength, but my children are the most important (Tjoflat)

You tend not to do anything and it's just a horrible unstructured day (Wright)

3g. Worry about I now have a relationship with a girl and I’m worried if I’ll start doing too the future much or be depressed and that it will ruin things in my life again as it has done several times before (Rusner)

In addition to heredity and the worries that their children would be harmed by their periodically reduced ability to parent, the parents were also afraid of and wanted to prevent their children from experiencing stigmatization (Tjoflat)

All these experiences of shame and guilt are experienced as a background for the always present anxiety and concern for the future (Rusner)

3h. Thinking of All of the participants had experienced grief and loss regarding the what could have dreams and goals in life they had prior to the onset of the disease, as the been disorder had initially been perceived as negative and destructive (Tjoflat)

I think I would have had my degree by now. I think I would have been able to get the qualifications I wanted much earlier and have a job (Inder, 2008)

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)

4. Threat

4a. Experiencing … ultimately I don't think that I could carry on long term and do what I moods and their want to do with my life, simply being depressed and relying on alcohol to changes get by, because for me that's not what I wanna do (Cappleman)

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)

The symptoms of mixed states were a burden in themselves. The ways in which they affected participants’ functioning in key domains of life added significantly to this burden (Mortensen)

183

Yes it feels like, like one’s body’s going to pieces. It’s like, it’s like an egg, you’re like an eggshell that starting to crack, you know like Piff and Puff, when they’re in that cartoon film, that’s what it’s like, you really feel like an eggshell that’s going to crack. ... And it’s, it’s really terrible, it is (Rusner)

You have to experience it. . . . When you experienced it once, you feel the dreadfulness of it. You immediately know it . . . that moment when you slipping away into that depressive feeling. You feel awful; everything is black. When you are lifting up towards a manic episode, you do not seem to notice it at all, but you recognise the beginning of a depressive episode at once, because everything around you becomes colourless (Van den Heuvel)

It’s the contrast of extremes: from bathing in champagne to waking up in a tub of black paint (Veseth)

4b. Changes in She also described how she would make a ‘fool’ of herself when picking thoughts and her children up from school, commenting that after an experience of behaviours being ‘high’ she ‘ . . . felt really embarrassed and like, you know, I had no dignity left (Russell)

After about four days [with no sleep] you get psychotic thoughts, it was and then yeah it was I did a whole lot of really embarrassing naked in public stuff yeah, just you know just glad it didn’t happen here. Although stuff has happened here like I have like stripped naked, not fully naked in my underwear on the strip on a Saturday night while in a ﬁght it’s just like really crazy behaviour (Crowe)

So when I’m depressed I get shallow less negative thoughts and well I don’t care about the way I look and compare myself to other people all the time and just start feeling negative (Crowe)

Like I actually mentally change and think differently and act differently (Inder, 2008)

All of the participants told stories about things that they had said and done, which they later bitterly regretted (Tjoflat)

4c. Viewing self For some participants the need to take medications was regarded as a negatively sign that they were not normal; they were not who they wanted to be (Crowe)

Well it’s like a ﬂaw, there’s something wrong or something (Crowe)

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. I feel like whatever you want to call it, even though they’ve never said or done anything in that way (Crowe)

It’s just like a feeling, like an unbearable feeling. I don’t know. It’s like a self-loathing type of thing (Inder, 2008)

That’s funny, because the only person who stigmatises me is myself. Most of my friends, even those that learned I have this problem are not bothered. I, myself, feel really uncomfortable; I really believe that people would think I am crazy. I am the only one who stigmatises myself (Wang)

184

This surveillance required that they had a heightened sense of symptoms of abnormality which was superimposed by a sense of self that was deﬁcient and culpable (Wilson)

5. Relationships

5a. Impact on [My friends] were a bit miffed by my changes in personality…and that relationships and eventually caused us not to be friends anymore… I’ve lost so many others friends… (Fletcher)

I am scared of getting pregnant again because I don’t want my child to be taken away … now that I have been diagnosed … It scares me so much (Dolman)

All participants described experiences of relationship loss (Fernandez)

I am not able to be there for her when I have gone to hospital. I cannot really be a mother for her. That is a loss for me because she is very important to me, and to not feel that I can be a parent to her—it is difficult (Fernandez)

Patients spoke primarily about the emotional impact of bipolar disorder on their partners. These effects included helplessness, loneliness, shame, anxiety, hypervigilance, and frustration (Granek)

There is always anger after hospitalization. I ask, ‘why did you hospitalize me? Why didn’t you take care of me? (Granek)

It can be unbearable to think about how one has hurt those who are most important in one’s life (Rusner)

Having BD also influenced the participants’ willingness to establish connections, with one participant expressing a conscious decision not to let others get close (Inder, 2008)

The parents were aware that their children were very attentive to their disease states and might get scared and worried (Mortensen)

Other people don't even come into it when you're so low and so depressed and suicidal, when you get to that stage all you're thinking of is ‘how can I get away with it? How can I make an excuse to get out of the house and do it?’ You feel like such a burden to everyone that you can't even see any negative effects might have on them (Owen)

5b. Lack of A lack of perceived social support was also cited as a key factor in sufficient and triggering suicidal thoughts (Owen) consistent support I’d like to have the same person that I see each time that I come. I want it to be the same person. If that person isn’t available (Blixen)

Although some employers made allowances for the illness, this was not sustained, often leading to loss of employment for the participants (Inder, 2008)

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 (Venkatarman)

185 The lack of such support was perceived as an additional burden (Tjoflat)

5c. Poor There have been times in my life where I've not been listened to by experiences of professionals and they think they understand my moods but they have professional not got a clue […] it was a total misunderstanding of someone's thoughts support of suicide and that can actually deﬁnitely send you over the edge (Owen)

Despair, and anger and resentment, particularly over what they perceived to be poor medical treatment in the past (Granek)

Many participants experienced unhelpful contact with clinicians and often felt disrespected (Inder, 2010)

People who did not adhere to medication, as required, disclosed negative feelings towards their doctors. In their view, their doctor did not know how to treat them apart from prescribing medication (Wang)

5d. Not being I’m not just another number, another file. Take me in personally and seen as an really try to see what I need to do, what I need to make myself better individual (Blixen)

Their experience of having others define them by their bipolar disorder was met with reactions of embarrassment and shame (Inder, 2008)

In contrast to somatic illnesses that you may have , several participants felt that mental disorders are often seen by others as something you are . You are a ‘manic depressive’ (Mortensen)

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)

6. Stigma

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)

One Asian woman said her family did not understand her illness because they ‘didn’t believe’ in mental illness (Dolman)

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)

…you know I’m not ashamed of it like I was before… because of course there is still a big stigma with mental health (Mansell)

For example, For most participants it was not only the symptoms that impacted on their stigma interfaces lives but also the response of others to those symptoms (Crowe) between implications of Other participants described concerns about how others might perceive diagnosis and them due to side effects; for example, Liam described concerns that interpersonal students he taught would see him as ineffective because of the impact of issues side-effects (Cappleman)

186 I don’t tell people as much as I used to, sort of learned it’s not really the way to go, it’s not good for friendships always you know (Crowe)

Relationships were also affected by the way the participants were perceived by their relatives and friends…For instance, some participants faced negative comments such as, “You are a lunatic,” and “You have been in the loony bin,” (Fernandez)

That’s the way it is with mental illness. They say that there are no prejudices any more, because people are so enlightened, but that isn’t true. . . . They look askance at you and think, “Hmm she’s mentally ill and her behavior is different” and at times they don’t believe what you say . . . and that may be the reason why I ﬁnd it difﬁcult to accept the illness (Jönsson)

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)

For example, All of the participants had experienced stigmatizing attitudes from their stigma from surrounding environment, which could help to nurture a negative or others worsening unrealistic self-image (Tjoflat) own negative view of self

7. Fear of relapse

Participants expressed an overwhelming fear of depression—describing frustration, anger and despair (Fletcher)

Expectations that ‘down’ days would escalate into a full-blown episode (Fletcher)

I am very scared of myself. About the pills, and when I come for check- ups, I am very scared [about relapses] (Granek)

No. I think it is an underlying condition. It has not gone forever. I think that if I were to come off my medications, I think that I would have a relapse (Mansell)

The threat of a new full-scale episode was imminent (Mortensen)

Reﬂections also opened a cynical perspective such that regardless of what preventive measures were taken, a recurrent episode was inevitable (Van den Heuvel)

For example, fear of relapse linking implications of diagnosis and uncertainty:

At the back of my head there is always the worry that it might go a little too far and I’ll go manic (Mansell)

One participant expressed more of an active desire to come off medication, and held generally positive attitudes towards the outcome, but still expressed doubts over whether she would inevitably ascend into mania (Mansell)

187

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)

For example, fear of relapse linking to loss: In order to prevent triggering episodes and to stay as ‘mood-neutral’ as possible, the participants said they mostly tried to lead lives with rather strict routines: getting their sleep, eating regularly and avoiding stimuli such as coffee, alcohol and excessive sports (Mortensen)

Loss of pleasure: … 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)

Loss of control: ‘In the past I thought I could control myself without taking any medication. Now I wouldn’t think like that. Deﬁnitely medicine has negative effects. The doctor will gradually reduce the quantity of your medicine. But I do remember to take medicine. 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)

The service users commonly felt this uncertainty and fear of not being able to respond (Van den Heuvel)

188 Appendix 7: The list of organisations where prior agreements were made to assist in advertising the study

! International Bipolar Foundation

! Recovery Devon

! Hafal

! Evolving minds

! Awakenings project

! power2u

! Bipolar Scotland

! Bipolar UK

189

Appendix 8: Study advert

THIS PROJECT HAS BEEN APPROVED BY THE UNIVERSITY OF MANCHESTER ETHICS COMMITTEE

Have you had a diagnosis of bipolar disorder? Do you feel that you are living the life that you want?

We are looking for adults aged 22+ to take part in a study exploring how people are able to live the life that they want following a diagnosis of bipolar disorder.

We want to learn from those who have achieved long lasting recovery and are able to live the life that they want. We are therefore looking for people who have received a diagnosis of bipolar disorder and not experienced an episode of major depression or mania within the last 4 years.

Unfortunately only English speakers and participants with no major sensory or learning impairments, can take part due to the nature of interview.

If you wish to take part in the study, and meet the above criteria, you will be asked to complete a short questionnaire to collect basic information about you. We will then arrange convenient times for you to be interviewed to determine what type of bipolar disorder you met in line with current guidelines, and then to talk about your experiences and journey to being able to live the life that you want. This could take place at the University of Manchester or via phone or video calling.

For more information or if you are interested in taking part, please contact: Helen Warwick on: [email protected] or 0747 094 9629

Supervisor: Dr Warren Mansell: [email protected] Supervisor: Dr Sara Tai: [email protected] UREC approval: Ref: 2017-0417-2019

190

Appendix 9: The terminology used by participants when asked what term or phrase would fit best for them in relation to the idea of recovery or being able to live the life that you want

! Psychologically well

! In recovery

! Getting well

! Living in the moment

! Being able to enjoy the little moments

! Having a breakthrough

! Coming back to a state of empowerment

! Having a normal lifestyle

! A person living in recovery from a diagnosis of bipolar disorder

! Just living my life without the symptoms intruding

! Stability

! Being stable

! Managing

! More in charge

! Being in control

! Happy and content

! Beyond recovery… very stable and happy

191

Appendix 10: Ethical approval letter

192

193 Appendix 11: Participant consent forms

The University of Manchester, Oxford Road, Manchester, M13 9PL www.manchester.ac.uk

Living the life you want following a diagnosis of Bipolar Disorder

CONSENT FORM

Study title: Living the Life You Want: A Grounded Theory Analysis of Service-User Accounts of What Sustains a Lasting Recovery from Bipolar Disorder

Principle Investigator: Helen Warwick

This Project Has Been Approved by the University of Manchester’s Research Ethics Committee [Ref: 2017-0417-2019].

PLEASE INITIAL BOX 1. I confirm that I have read the information sheet on the above project and have had enough time to consider the information.

2. I confirm that I have had the opportunity to ask questions about the study and that these questions have been answered satisfactorily.

3. I understand that participation is completely voluntary and that I am free to withdraw at any time without giving reason.

4. I understand that participation in the study will not be anonymous since the researcher will meet personally with all participants, however all information will be kept confidential.

5. I understand that data will be collected via audio recording of the interviews.

194 The University of Manchester, Oxford Road, Manchester, M13 9PL www.manchester.ac.uk

6. I understand that information I discuss in the interviews will be used to develop the findings of the research project but that my identity will not be revealed.

7. I understand that relevant sections of data collected during the study may be looked at by responsible individuals from the University of Manchester and other research collaborators. Where it is relevant to my taking part in the research. I give permission for these individuals to have access to this data.

8. I agree that any data collected may be archived and used as anonymous data as part of a secondary data analysis process in future studies.

YES NO

9. I agree for direct anonymised quotations to be stated as examples within the write up of the researcher’s thesis and journal paper.

YES NO

10. I agree to undertake a diagnostic assessment as part of the study, facilitated by the researcher.

YES NO

11. Would you like to be sent an update on the studies findings?

YES NO

If yes please supply an email address: …………………………......

195 The University of Manchester, Oxford Road, Manchester, M13 9PL www.manchester.ac.uk

11. I agree to take part in the above study.

Name of Participant:

Signature: Date:

Name of Researcher: : Helen Warwick

Date: Signature:

For more information please contact:

Researcher: Helen Warwick: [email protected] or 0747 094 9629 Supervisor: Dr Warren Mansell: [email protected] Supervisor: Dr Sara Tai: [email protected]

Contact information of sources in case of distress, or for personal advice: Samaritans number/email: 116 123/ [email protected] Bipolar UK number/email: 0333 323 3880/ [email protected]

196 Appendix 12: Participant information sheet

Living the life you want following a diagnosis of Bipolar Disorder Participant Information Sheet

You are being invited to take part in a research study as part of a doctoral project. Before you decide, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Please ask if there is anything that is not clear or if you would like more information. Take your time to decide whether or not you wish to take part. Thank you for reading this.

Who is carrying out the research? This research is being conducted by Helen Warwick who is a Trainee Clinical Psychologist at the University of Manchester. The project will be supervised by Dr Warren Mansell and Dr Sara Tai, who are both qualified Clinical Psychologists working at the University of Manchester.

What is the purpose of the research? We want to talk to you about your experiences of recovery following a diagnosis of bipolar disorder and how you think you made the changes that helped you recover and live the life that you want. This information will help us understand recovery from bipolar disorder and help us improve treatments for others.

What would I be asked to do if I took part? If you are interested in taking part, this is what will happen:

1. We can arrange to talk to you about the study and check that you are able to be involved. This gives you a chance to find out more and ask any questions. We can have this talk over the telephone or via email.

2. You will be given some time to think about whether you want to take part in the study. If you decide that you do want to take part we will ask you to sign a consent form stating that you want to be involved. We will also ask you to fill out a short questionnaire asking for information like your age and gender.

3. We would then arrange a time with you when we will phone you and carry out a standardised diagnostic assessment.

4. If you meet the diagnostic eligibility criteria and are still happy to take part then we will arrange a time for the interview. The interview will most likely take place at The University of Manchester in a private room with the researcher. However, it could also take place over the telephone or via video recording if this is more convenient

197

Are there are potential benefits to taking part? There are no specific benefits to you taking part in the study. It is hoped that the study will allow you an opportunity to share your experiences, and that in doing so, you will feel that you are part of a piece of research which aims to improve support for people with bipolar disorder.

Will I find the study distressing? The study has not been designed to cause you any distress. However, some people may find talking about some of their experiences distressing either in the diagnostic assessment phase or the main interview. The researcher will allow you to take a break at any time and will provide emotional support should this occur. We advise that you try and plan an enjoyable activity to do after you have participated following both the diagnostic assessment and the interview.

What happens if I do not want to take part or if I change my mind? Participation in this study is entirely voluntary. If you do decide to take part you will be given this information sheet to keep and be asked to sign a consent form. If you decide to take part you are still free to withdraw at any point (until the results have been analysed) without giving a reason and without detriment to yourself. However, once we have analysed the interviews, it will be too late to remove any information that you provided.

Will I be paid for participating in the research? We will cover any travel expenses for coming to the University. You will be given this money at the end of the interview. Unfortunately we are not able to provide any payment for your time.

What is the duration of the research? Both the diagnostic assessment and interview are likely to take about one to one and a half hours each. You are welcome to take any breaks during this time.

Where will the research be conducted? The University of Manchester, Oxford Road, Manchester, M13 9PL, or via telephone or video calling if preferred.

Will the outcomes of the research be published? Yes, it is hoped that the study will be published as part of the researcher thesis and within a peer reviewed journal.

Who has reviewed the research project? The project has been reviewed by the University of Manchester Research Ethics Committee.

What if I want to make a complaint?

Minor complaints: If you have a minor complaint then you need to contact the researcher(s) in the first instance on the details below.

198 Formal Complaints: If you wish to make a formal complaint or if you are not satisfied with the response you have gained from the researchers in the first instance then please contact the Research Governance and Integrity Manager, Research Office, Christie Building, University of Manchester, Oxford Road, Manchester, M13 9PL, by emailing: [email protected] or by telephoning 0161 275 2674 or 275 2046.

What Do I Do Now? If you have any queries about the study or if you are interested in taking part then please contact the researcher or supervisors:

Helen Warwick on: [email protected] or 0747 094 9629

Supervisor: Dr Warren Mansell: [email protected] Supervisor: Dr Sara Tai: [email protected]

This Project Has Been Approved by the University of Manchester’s Research Ethics Committee [Ref: 2017-0417-2019].

Contact information of sources in case of distress, or for personal advice: Samaritans number/email: 116 123/ [email protected] Bipolar UK number/email: 0333 323 3880/ [email protected]

199

Appendix 13: Initial screening form

The University of Manchester, Oxford Road, Manchester, M13 9PL www.manchester.ac.uk

Initial screening

Study title: Living the Life You Want: A Grounded Theory Analysis of Service-User Accounts of What Sustains a Lasting Recovery from Bipolar Disorder

Principal Investigator: Helen Warwick

This project has been approved by the University of Manchester Research Ethics Committee [Ref: 2017-0417-2019].

This information will be treated anonymously.

Do you speak fluent English? Yes No Do not wish to say

Are you over the age of 22 years? Yes No Do not wish to say

Have you ever been given a Yes No Do not wish to say diagnosis of bipolar disorder?

Have you been admitted to a Yes No Do not wish to say hospital within the past 4 years?

Have you ever had a medical Yes diagnosis that accounts for your No Do not wish to say mood symptoms?

Have you ever been diagnosed Yes No Do not wish to say with a learning disability?

200 Appendix 14: Demographic questionnaire

The University of Manchester, Oxford Road, Manchester, M13 9PL www.manchester.ac.uk

Demographic and clinical questionnaire

Study title: Living the Life You Want: A Grounded Theory Analysis of Service-User Accounts of What Sustains a Lasting Recovery from Bipolar Disorder

Principal Investigator: Helen Warwick

This project has been approved by the University of Manchester Research Ethics Committee [Ref: 2017-0417-2019].

This information will be treated anonymously.

Gender (please Male Female Do not wish to say circle)

Date of birth Age: (dd/mm/yyyy)

Ethnicity EUROPE BLACK OR OTHER AN BLACK ASIAN MIXED ETHNIC (please WHITE BRITISH GROUPS circle) White and British Caribbean Indian black Chinese Caribbean

White and Irish African Pakistani black DO NOT African WISH TO SAY White and Any other Bangladeshi Asian ethnic Other group Other black white Other mixed (please background backgroun Other Asian background specify) (please d (please background (please specify) specify) (please specify) specify)

201

Are you currently receiving any Talking therapies? Medication? psychological support? Yes No Yes No (please circle)

What is your No formal GCSE’s/O- A-levels highest level qualifications levels of education? Graduate Postgraduate (please circle)

What is your employment status? Unemployed Employed Retired

(please circle)

*What is the

diagnosis Other Specified that you Bipolar I Substance/ Cyclothymic Bipolar and disorder Medication-Induced Disorder have been Related Bipolar and Related Disorder given in Disorder relation to Bipolar

Disorder?

(please Bipolar and Related Bipolar II Unspecified Disorder Due to circle Bipolar and Another Medical disorder Related Disorder Condition

*How long has it been since you were given the diagnosis of Years: Months: bipolar disorder?

202

*Have you ever Yes No been admitted to a

psychiatric hospital? On how many occasions have you (please circle) been admitted?

*When was the last time you were admitted to a (year) psychiatric hospital?

*When was your last episode of depression or (dd/mm/yyyy) mania?

*How many episodes of depression have you experienced?

*How many episodes of hypomania/mania have you experienced?

203

Appendix 15: Lone worker policy

Local Lone Working Policy

Introduction

1. This guidance is to be used alongside the University departmental document “School of Psychological Sciences Safe Lone Working Practices & Risk Assessment” (updated March 2015). The current document refers to local arrangements and systems to protect lone workers.

2. A lone worker is defined as “A person working without close or direct supervision and without contact from others. It can take place both out of hours and during the work day” This definition covers those workers who could be inside university buildings or similar environments, or in a community or research setting.

3. All staff have a responsibility to ensure that local procedures and policies are adhered to in order that lone workers feel safe and secure to perform their duties.

4. Incidents involving lone workers are rare, however, it is important that lone workers are encouraged to report all incidents of physical and non- physical assault, using the university’s incident report form as well as the local environments incident reporting procedures.

5. This policy is designed to provide lone workers with practical advice to assist in preparing for a lone worker situation and meet the legislative responsibilities under the Health and Safety at Work Act 1974 and the Management of Health and Safety at Work Regulations 1999.

Risk Assessment

A risk assessment for lone working will be conducted prior to visiting the host department. This will include answering the following questions: 1. Where will I be working? 2. Who else is likely to be around? 3. What time of day am I going and returning from the location? 4. How will I be getting there? 5. Is there a safe means of access and exit from the work location, including getting to and from transport? 6. Am I competent to complete the work, including consideration of being medically fit to complete the work? 7. Are there effective communication links in the environment? Can I get in touch with others in the environment and in contact with others outside the environment? 8. Do I know the local procedures for responding to fire alarms and other emergencies? 9. Do I know who to contact in the event of needing assistance? 10. Are there any other considerations?

Version 2.0 HW 28.2.17 1

204 Lone Worker Movements

The specific controls necessary must be proportionate to the risk and be informed by the risk assessment process but will include:

1. Contact details (mobile phone number / phone number of location) left with manager or colleague. This will be either one of the research supervisors (Warren Mansell or Sara Tai), the administrators within the department or another agreed colleague within the research team (Adelene O’Connor).

2. Details of location and anticipated time of return left with manager or colleague (as stated in point 1).

3. Details of vehicles used by lone worker left with a manager or colleague (as stated in point 1), for example, registration number, make, model and colour of car.

4. Regular contact with a manager or relevant colleague (as stated in point 1), particularly on departure to or leaving an appointment (within 30 minutes of agreed times).

5. Where there is a genuine concern, as a result of a lone worker failing to attend a visit or make contact as agreed, the manager or colleague (as stated in point 1) should use the information in the log to locate where the lone worker is and contact them. Depending on the circumstances (identified risk) and whether contact through normal means can be made, the manager or colleague should involve University Security if necessary.

6. If it is thought that the lone worker may be at risk, it is important that matters are dealt with quickly, after considering all available facts. Security will advise if police involvement is needed, and will need full access to information held and personnel who may hold it, if that information might help trace the lone worker and provide a fuller assessment of any risks they may be facing.

Lone Working and Vehicles

1. Before setting out, lone workers should ensure they have adequate fuel for the journey.

2. They should give themselves enough time for the journey to avoid rushing or taking risks, owing to time pressures

Version 2.0 HW 28.2.17 2

205

3. Items such as bags, notes or other equipment should never be left visible in the car. These should be out of sight, preferably stored in the boot.

4. The current study will not require the transportation of participants to or from any location.

Version 2.0 HW 28.2.17 3

206 Appendix 16: Distress management protocol

The University of Manchester,

Oxford Road,

Manchester, M13 9PL

www.manchester.ac.uk Distress Protocol

Study title: Living the Life You Want: A Grounded Theory Analysis of Service-User Accounts of What Sustains a Lasting Recovery from Bipolar Disorder

Principle Investigator: Helen Warwick

This Project Has Been Approved by the University of Manchester’s Research Ethics Committee [Ref: 2017-0417-2019].

There will be three separate stages within this research study; the screening phase, participation in the diagnostic assessment, and participants in the interview. Potential distress will be managed differently at each stage of the research dependent on the level of expected distress, the type of information participants will encounter and whether participants have face to face contact with the researcher (or contact is via telephone or skype).

Screening phase ! Participants will be asked to complete an initial screening questionnaire via email. ! It is not expected that participants will find these questions distressing however sources of support will be provided. ! They will be advised that they are able to stop completing the screening at any time and withdraw from the study.

Participation in the study: Diagnostic assessment and interview ! Participants will be asked to complete a diagnostic assessment facilitated verbally by the researcher. ! They will be informed prior to this that it maybe touch on topics which they may find distressing to talk or think about. ! They will be reminded that they can stop at any point without providing a reason and the researcher will stop the task if the participant appears to be becoming unduly distressed. ! A mild level of distress maybe expected when participants discuss particularly traumatic experiences (if relevant) and it would be expected that this would reduce towards the end of the session. ! If the level of distress was at a level that researcher and participant were able to contain and manage this, the researcher would allow the participant to continue

207 and would not intervene beyond offering verbal support and a comfort break if required (if over the telephone or skype, the researcher will stay on the line during this period).

It is not expected that the procedure at any stage of the study will cause participants to experience high levels of distress. However, if high distress is experienced then this will be assessed and managed within the session.

Acting on information provided: DISTRESS PROTOCOL

Distress: Participant verbalises or shows signs that they might be distressed (e.g. exhibits behaviours such as crying, shaking etc or tone of voice changes to suggest distress.). This might suggest that questions are/were too stressful for the participant. All participants will also be asked at the end of the interview if the interview brought up anything difficult for them).

Step 1:

• Researcher offers immediate emotional support • Explore distress level and assess risk • Ask the participant if they would like to stop the interview • Ask the participant if they would like a short break

Review: If participant would like to carry on then resume interview

If participant would like to stop or is too distressed to carry on with the therapy/interview then proceed to Step 2

If risk is highlighted, assess and proceed to follow separate risk protocol.

Step 2:

• Discontinue interview and remain with participant (either in the same room or remain on the telephone or skype line if interview is not face to face) • Ask participant if they would like to remain where they are for a while to calm down, and offer verbal support • Ask participant if they would like to call anyone to come and meet them. • Plans for after the interview has ended will be discussed with all participants to assist in reducing any ongoing distress. (Making a plan of something nice to do afterwards will have been advised on the information sheet prior to consenting to the study). • When the participant is ready to leave (or for the telephone or skype call to end), they will be reminded of the support numbers to use if necessary. • Researcher to seek supervision from supervisors.

Follow up:

• If participant consents, follow up with a courtesy call the next day • Encourage participant to use provided support number

208 Appendix 17: Risk management protocol

The University of Manchester,

Oxford Road,

Manchester, M13 9PL

www.manchester.ac.uk

Risk Protocol

Study title: Living the Life You Want: A Grounded Theory Analysis of Service-User Accounts of What Sustains a Lasting Recovery from Bipolar Disorder

Principle Investigator: Helen Warwick

This Project Has Been Approved by the University of Manchester’s Research Ethics Committee [Ref: 2017-0417-2019].

There will be three separate stages within this research study; the screening phase (to confirm eligibility for the study), participation in a diagnostic assessment, and participation in an interview. Risk will be managed differently at each stage depending on the level of risk, the type of information participants will encounter and whether participants have face-to-face contact with the researcher (or contact is via telephone or skype).

Screening phase ! Participants will be asked to complete an initial screening questionnaire. ! It is not expected that participants will disclose any information relating to potential risk at this stage. However, should risk information be disclosed it will be assessed and managed as below. ! Participants will be advised that they are able to stop completing the screening questionnaire at any time and withdraw from the study.

Participation in the study: Diagnostic assessment and interview ! Participants will be asked to complete a structured clinical interview for the purposes of diagnostic assessment conducted by the researcher. ! Participants will be informed prior to this that questions might touch on topics that participants could find distressing to talk or think about. ! Participants will be reminded that they can stop at any point without providing a reason. The researcher will also stop the task if the participant appears to be distressed or reports high levels of risk to self or others, from self or others. ! Discussing past thoughts of self-harm or suicidal thoughts or attempts, and previous abuse or trauma, may occur only if the participant chooses to discuss these. If this is the case the researcher will sensitively address the subject matter and assess current risk during the interview. Any distress triggered by this would be expected to reduce towards the end of the session. The following protocol will be followed

209 Acting on information provided: RISK PROTOCOL

RISK:

- Participant verbalises past or current risk issues e.g. suicidal thoughts, plans, past attempts, or self-harming behaviours. - Participant discloses past/potential threats to self from others - Participant discloses potential own threat to others. -

Step 1:

• Researcher offers immediate verbal emotional support • Researcher to explore severity and assess if imminent risk • Ask the participant if they would like to stop the interview • Ask the participant if they would like a short break (researcher to stay with participant or stay on the line if over the telephone or skype)

Review: If participant would like to carry on then resume interview

If participant would like to stop or risk level is considered high or imminent then proceed to Step 2

Step 2:

• Discontinue interview, and remain with participant (stay on the line if over the telephone or skype) • Ask participant if there is anyone they or the researcher can call to come and meet the participant • Ask participant if they are able to remain in the room, or stay where they are and on the line (if via telephone or skype) whilst further support is arranged. • Researcher to seek supervision from the supervisors (by telephone if not in the department) to discuss risk/potential safeguarding issues). • Remind participant of the the support line numbers to use if required • Further assess and in the unlikely event that the risk to self is imminent (or has already occurred ie disclosure of taking an overdose tablets for example) advise the participant that you wish to accompany them to the Accident and Emergency Department. In the event that transfer to A&E might increase risk to the participant and/or researcher), advise participants that the University of Manchester security may accompany you both or an ambulance can be called if required. If the interview is being conducted over the telephone or skype, then advise the participant that you will call for an ambulance to take them to A&E or the local crisis team. If in the extremely unlikely event support is required to gain access to where the participant is, then the police would also be called. • Further assess if risk to others or risk to participant from others is imminent. Consider if safeguarding lead or police need to be contacted.

Follow up:

• If participant consents, follow up with a courtesy call the next day • Encourage participant to use provided support number

210 Appendix 18: Score sheet used within the diagnostic assessment interview

DSM-V score sheet.docx Participant Score specifiers on full DSM-V No. Date __ __ / __ __ / __ __ Interviewer…………….. if clinically relevant A. MOOD EPSIODES MODULE A.1 CURRENT MDE A1. Depressed mood 1 2 3 A2. Diminished Interest 1 2 3 A3. Weight loss or gain 1 2 3 A4. Insomnia or hypersomnia 1 2 3 A5. Psychomotor changes 1 2 3 A6. Loss of energy 1 2 3 A7. Worthlessness/guilt 1 2 3 A8. Trouble Concentrating 1 2 3 A9. Thoughts of death/suicide 1 2 3 At least five coded ‘3’ 1 3 C. Clinically Significant 1 2 3 D. Not due to drug/medical 1 3 E. Not due to bereavement 1 3 ACDE Coded ‘3’ 1 3 Age of onset ______Number of episodes ______A.5 PAST MDE A1. Depressed mood 1 2 3 A2. Diminished Interest 1 2 3 A3. Weight loss or gain 1 2 3 A4. Insomnia or hypersomnia 1 2 3 A5. Psychomotor changes 1 2 3 A6. Loss of energy 1 2 3 A7. Worthlessness/guilt 1 2 3 A8. Trouble Concentrating 1 2 3 A9. Thoughts of death/suicide 1 2 3 At least five coded ‘3’ 1 3 C. Clinically Significant 1 2 3 D. Not due to drug/medical 1 3 E. Not due to bereavement 1 3 ACDE Coded ‘3’ 1 3 Age of onset ______Number of episodes ______A.10 CURRENT MANIC A. Elevated/Irritable mood 1 2 3 A. 1 week or hospitalisation 1 2 3 B1. Inflated self esteem 1 2 3 B2. Decreased need for sleep 1 2 3 B3. Pressure of Speech 1 2 3 B4. Flight of ideas 1 2 3 B5. Distractibility 1 2 3 B6. Goal-directed activity 1 2 3 B7. Excessive risk activities 1 2 3 C. Marked impairment 1 2 3 At least 3 coded ‘3’/ 4 if irritable 1 3 D. Not due to drug/medical 1 2 3 ABDE Coded ‘3’ 1 3 Age of onset ______Number of episodes ______A.14 CURRENT HYPOMANIC A. Elevated/Irrit mood 4+ days 1 2 3 B1. Inflated self esteem 1 2 3 B2. Decreased need for sleep 1 2 3 B3. Pressure of Speech 1 2 3 B4. Flight of ideas 1 2 3 B5. Distractibility 1 2 3 B6. Goal-directed activity 1 2 3 B7. Excessive risk activities 1 2 3 At least 3 coded ‘3’/ 4 if irritable 1 3 C. Unequivocal change 1 2 3 D. Observable by others 1 2 3 E. Not marked impair/psychosis 1 2 3 F. Not due to drug/medical 1 3 ABCDEF Coded ‘3’ 1 3 Age of onset ______Number of episodes ______A.19 PAST MANIC A. Elevated/Irritable mood 1 2 3 A. 1 week or hospitalisation 1 2 3 B1. Inflated self esteem 1 2 3 B2. Decreased need for sleep 1 2 3 B3. Pressure of Speech 1 2 3 B4. Flight of ideas 1 2 3 B5. Distractibility 1 2 3 B6. Goal-directed activity 1 2 3 B7. Excessive risk activities 1 2 3 C. Marked impairment 1 2 3 At least 3 coded ‘3’/ 4 if irritable 1 3 D. Not due to drug/medical 1 2 3 ABDE Coded ‘3’ 1 3 Age of onset ______Number of episodes ______A.23 PAST HYPOMANIC A. Elevated/Irrit mood 4+ days 1 2 3 B1. Inflated self esteem 1 2 3 B2. Decreased need for sleep 1 2 3 B3. Pressure of Speech 1 2 3 B4. Flight of ideas 1 2 3 B5. Distractibility 1 2 3 B6. Goal-directed activity 1 2 3 B7. Excessive risk activities 1 2 3 At least 3 coded ‘3’/ 4 if irritable 1 3 C. Unequivocal change 1 2 3 D. Observable by others 1 2 3 E. Not marked impair/psychosis 1 2 3 F. Not due to drug/medical 1 3 ABCDEF Coded ‘3’ 1 3 Age of onset ______Number of episodes

Skip if A.28 CURRENT manic CYCLOTHYMIC or A. 2yrs hypomanic/depressive 1 2 3 B. Present > ½ time 1 2 3 C. Not MDD, mania, 1 2 3 hypo- Sx hypomania manic D. Not better explained 1 2 3 E. Not drugs or medical 1 2 3 F. Significant distress 1 2 3 ABCDEF Coded ‘3’ 1 3

211 21

DSM-V score sheet.docx

Skip if Score S30-A48 on full DSM-V if ever manic A.30 CURRENT clinically relevant or hypo- PERSENTDEPRESSIVE manic DISORDER

A.36 A. 5+ sx present in most 1 2 3 If A Coded 2 or 3 complete Skip if male, PREMENSTRUAL DYSHORIC post menstrual cycles section menopausal, S DISORDER pregnant

Skip if SX not A41.GMC ass with medical /SUBSTANCE BP condition

Skip if SX A43. not ass with SUBSTANCE/ MEDICATION substance use BP

Skip if dep A45. SX not ass GMC/SUBSTANCE with medical DEPRESSIVE SX condition

Skip if dep A48. SX not ass SUBSTANCE/MEDICATION with DEPRESSIVE SX substance use

B/CPSYCHOSIS SCREENING MODULE – if checked, explore in detail

PSYCHOTIC & ASSOCIATED Never Mania Depressed Outside Episode Delusions of Reference 1 2 3 2 3 2 3 Thought Broadcasting 1 2 3 2 3 2 3 Other delusion 1 2 3 2 3 2 3 Auditory Hallucinations 1 2 3 2 3 2 3 Visual Hallucinations 1 2 3 2 3 2 3 Tactile Hallucinations 1 2 3 2 3 2 3 Persecutory delusion 1 2 3 2 3 2 3 Grandiose delusion 1 2 3 2 3 2 3 Somatic delusion 1 2 3 2 3 2 3 Delusion of guilt 1 2 3 2 3 2 3 Jealous delusion 1 2 3 2 3 2 3 Erotomanic delusion 1 2 3 2 3 2 3 Religious delusion 1 2 3 2 3 2 3 Delusion of being controlled 1 2 3 2 3 2 3 Thought insertion 1 2 3 2 3 2 3 Thought withdrawal 1 2 3 2 3 2 3 Somatic hallucination 1 2 3 2 3 2 3 Gustatory hallucination 1 2 3 2 3 2 3 Olfactory hallucination 1 2 3 2 3 2 3

Any item above coded 3 1 3 outside of a dep / high episode? Ever a time these SX when 1 3 not dep / high/ irritable?

212 Appendix 19: Interview schedule

LSRP: service-user accounts of what sustains a lasting recovery from bipolar disorder

Interview topic guide

Initial opening: ‘Thank you for agreeing to take part in this study. The aim of the study is to explore and understand people’s experiences of recovery following a diagnosis of bipolar disorder. I will talk to you about your experiences of recovery and how you think you made the changes that helped you recover and be able to live the life that you want. We hope that this information will help us understand the recovery process within bipolar disorder and help improve treatments for others. Before we start I would just like to remind you of a few things and explain a bit more about what to expect.

The interview will consist of a series of open questions, some of which I may ask further follow up questions to explore your answers in more detail. It maybe that I ask you if there is anything else you would like to add, but please don’t worry if you feel you have ready answered the question as fully as you can.

The interview will take about an hour to an hour and a half and you are welcome to stop and have a break at any time. Would you prefer to plan in any breaks now, or you can just let me know when you would like one?

I also would like to remind you that everything we talk about today will be kept confidential. The only time I would break this confidentiality is if I had any concerns that there was risk of harm to you or to someone else. I would try and discuss this with you first if I thought I needed to share any information.

As already discussed, the interview is being audio recorded to allow me to transcribe what we have discussed afterwards.

Just to remind you as well that if you have agreed on the consent form, we may use direct quotations from this interview as part of our analysis. Your name and any identifiable information will be changed so that you remain anonymous. You can change you mind about this, or your involvement in the study at any point until we have analysed the data.

Do you have any questions?

It’s important to let me know if there is anything you don’t feel comfortable talking about today. Before we get started does anything come to mind immediately?

Ok, so this interview is about finding out from people who have achieved a longlasting recovery, what has enabled them to be able to lead the life that they want and how they have managed to achieve this. People often use the term recovery to describe slightly different things, such as when people no longer experience certain symptoms or are able to function as they would like to be able to. We want to be able to understand the process of achieving this level of functioning further and what it means to different people.’

(N.B main questions are in bold, possible follow up questions below in arrowed bullets and notes to interviewer in italics)

1. Opening questions:

⇒ ‘Would it be ok to begin by telling me a bit about your views of the diagnosis of bipolar disorder, perhaps in relation to your own experiences?’

213 LSRP: service-user accounts of what sustains a lasting recovery from bipolar disorder

⇒ ‘In relation to the idea of recovery or being able to live the life that you want, what term or phrase would fit best for you to describe this?’

2. Timeline:

⇒ ‘Can you tell me a bit about what you feel you have ‘recovered’ (use their term/phrase) from?’ And when you think this ‘recovery’ first started?’

(if necessary refer back to their last episode as mentioned in the SCID)

3.** Ways of staying well/facilitating recovery**:

⇒ ‘What would you put being or staying well down to?’ ! ‘How do you think you have managed to stay well?’ ! ‘What do you think have been the most significant things involved?’ ‘That you did?’ ‘That others did?’ ! ‘Is there anything that you would want to tell others about facilitating their own recovery? ! *You mentioned x, x AND y, what would you say was/is the most important factor/s? (aim to understand WHAT and HOW processes have facilitated recovery)

4.Barriers to recovery:

⇒ ‘ Is there anything that was less helpful in your recovery?’

5.Ending questions

⇒ ‘Is there anything that you think is significant in our understanding in how you have recovered that you haven’t mentioned already?’ ! ‘How have you found this interview with me today?’ ! ‘Did it bring anything up for you?’ ! ‘ What have you got planned after this?’

Probing questions to use throughout may include:

- ‘What do you mean by …?’ - ‘What did that involve?’ - ‘Can you tell me more about that?’ - ‘Does anything else come to mind?’ - ‘Do you want to take a moment to see if there is anything else?’ - ‘Anything else…?’ - ‘Is there anything else you would like to add?’

Ending: ‘Ok thank you we will finish there. Thankyou very much for taking part in this study, we really appreciate your time and involvement. As a small token of our appreciation, please accept this box of chocolates and card. If you are interested you are welcome to receive a summary of our findings once we have completed the study. If you have not already requested this on the consent form, please do let me know if this is something that you would like. Do you have any further questions before we finish?’

214 Appendix 20: Summary list of categories and subordinate categories identified

1) Support 1a. Others accepting me and showing they care 1b. Having practical and accessible support 1c. Receiving answers and guidance 1d. Valuing interactions with others 2) Recognition of the problem 3) Believing that things can change and not giving up 4) Instinctive curiosity 5) Medication 6) Psychological therapy 7) Becoming the director of your own life 8) Changing how I think 8a. Comparing the past and now 8a1. Reflecting on what things were like in the past 8a2. Recognising the progress I have made 8b. Broadening of perspectives 8b1. Gaining a realistic perspective 8b2. Questioning own thoughts 8c. Looking for the positives and appreciating what I have in my life 9) Accepting who I am and how I feel 9a. Self acceptance 9a1. Examining self to work out what’s important to me 9a2. Embracing differences from others 9a3. Accepting who I am 9b. Being able to sit with a range of feelings 10) Looking after me 10a. Gaining more self insight, awareness and understanding 10a1. Insight and awareness 10a2. Identifying early warning signs, triggers and maintenance factors 10a3. Learning what helps manage my mood 10b. Routine, balance and boundaries 10b1.Defining boundaries 10b2. Creating and maintaining a balance in activities 10b3. Having a routine to keep going 10c. Setting achievable goals 10d. Acknowledging and minimising stress 10e. Doing things for me 10e1. Doing things to have a sense of purpose and fulfilment 10e2. Finding things that you love and enjoy 10e3. Getting out and connecting to nature 10e4. Having time out to relax 10e5. Prioritising your own needs 10e6. Looking after my own wellbeing through diet, exercise and sleep 10ef. Present moment focused

215 Appendix 21: Table of categories and subordinate categories with examples of coded quotations

1. Support

As the P12: …I mean in hospital I just remember at my lowest, erm … there was one catalyst particular nurse who I really kind of clicked with […], who really helped me…. but the interaction between us, seemed to really helped me come out of my ... initial shell… when I was at my worst and I wasn’t eating and talking to anyone etc, and he managed to snap me out of it, so er I remember him very distinctly because it’s a catalyst that situation …ha…I mean that’s what er… seemed to be the case, whether there are other factors, as well that obviously er go together to, and that’s the catalyst

1a. Others P33: … when I was in hospital my family would visit everyday, I mean my accepting mum would be up everyday.. my dad erm.. the majority of times, obviously he me and had to work… sometimes he wouldn’t be up as much as he’d wanted to but ... showing they they were there all the time care P33:.I think erm the, if you looked at all the people that were in with me, I don’t think… any of them er had as many visitors as me erm… some people didn’t have any visits at all from from family which was pretty difficult for them … that was difficult to watch them not having any visits either… erm it just keeps you going I think if somebody’s coming to see you all the time …

P33: I think just being by my side was pretty… has been pretty good, just to have that someone to come home to and … like er just be around and I can talk too… which has been good…

P8: …he’s always been there in the background, not background but he’s always been there (I: yeah). And thats really nice to have that stable, kind of person that’s always supporting you and, or putting up with you at times, I mean its its very hard for him, it must have been to... to put up with somebody with depressions, very very hard it is and its, he’s out been very good about it

P8: I think the other thing is just having a really nice, or one or two really good friends, or stable people you can really trust to talk to, and they won’t judge you or they, er, they’ll be just there for you in, not necessarily there to help you, but they are there just to be a sounding board at least, and if they can’t sort you out, I mean they their not there to sort you out but they are their to maybe a least to show you ways out or, give you someone to, just talk to, you know), that that does help a lot, that... and I think that’s really, its just that support network I think

P8: I think another thing with being stable was that I’ve always, I’ve got a really good partner as well I think we’ve probably been together for about, ooh my gosh, 30 years now and he’s always been very supportive of me and always stood by me and I’m trying to think of any other factors that have been with me and he’s the one that has been there all the time, that’s really helped me a lot, I mean if I didn’t have somebody like that I’m sure, it I would be in a very, well much worse state, I might have not got to where I am now

P11: like just that constant like encouragement, .. and yeah, and like, .. pushing me forward, not in a horrible way, but just like encouraging it, and, getting me on the like living with bipolar course, and like helping on that, and .. and now like its really nice to like run that with XX, and you know just things like that, but yeah a, yeah just being there and supporting me again, yeah

216 P11: … also like my family, like my family’s been like massive, I have had like 3 different partners throughout the whole thing, erm which has been like traumatic, cos it would be nice to just have one but but you know because of various stuff that’s that’s not worked out, so the fact that my family have always been a constant there in the background, and again… erm even more support, and understanding, I mean at the beginning it was it was really hard and there were times that they struggled, but with the diagnosis, for me , like it helped them as well, to understand and then they were more forgiving of things that I’d done and things like that, erm so that now they’re always there, like .. kind of in the background if I need them, yeah which is great

P12: yeah its a, as I said it’s a, it’s a combination of the support continuing, and finding new support [laughs] because because er … the more I’ve been myself …er.. its been reflected onto me, I mean, I mean you know.. so… that’s it, its just being a much more authentic version of yourself, and and being fine with it, you know, so … you know, warts and all, whatever you want to call it [laughs], so so it is it is, it has… reflected back on me and I so, I feel that has added to what I did myself.

P12: …and then really just just my friends and partner just being there, because because … as I’ve mentioned there were beyond that there were periods when I did feel a bit low or whatever and they were there always, you know so so those are things falling into place,

P9: probably with you know people, you know friends taking, you know taking the lead with some things you know.. say for instance saying why don’t you come out you know for for a walk or or you know… a a play in the kayaks or something you know somebody taking on that lead role I suppose… with suggestions of things to do

P16: the main point I would like I I would like to share with them, I share with my students, is there is help out there… that recovery or stability is a possibility erm, its tough, I can’t imagine going through this alone, so er I certainly can emphasise with those who are trying to go through it without the support system I had, er so I think for those that don’t have the support system er where they live, you know, before I was married I would have been on my own through this, my family’s spread out all over the country so er .. I would say maybe get involved with local groups that are supporting people with mental health issues, er don’t try to do it by yourself

P16: ... when I was when I was er at home for the 6 months, erm and er feeling very low, like dangerously low at time, getting to hear from my family members daily er, and they’re spread out all over [location], but I, 3 of my sisters in particular would phone almost every single day, erm and just check in, how are you doing now and er, that was quite helpful and and they always knew the right thing to say..

P9: yeah and they you know, they have been supportive to me, and a… you know the sort of togetherness really is er.. pays dividends

P34: when I was in the hospital I had friends er… you know come and visit me in the hospitals when not a lot of people like visiting psychiatric hospitals cos they’re not really fun places to go .. erm but my friends did that …

P9: I think you know physical, emotional, erm and and also sort of passive as well you know with erm you know friends that I know I can just pick up the phone and say look you know I’m bad I need some help and they would be here, they would be here by, to you know reassure and... and prop me up I suppose …I think that’s probably one of the biggest… the big thing, and I think it does extend .. from family into your sort of social you know, friendship

217 P12: … when I talk about this being the best stage of my life, […] because initially I got so much support from… my partner, my family, my friends … erm in my lowest kind of period and and when I came out of hospital, with this kind of erm … well you know, what do you do know type thing [laughs] erm so I got a lot of support erm… and that for that er I’ve always been very grateful…

P34: I was a pretty shitty friend for a really long time but er I was lucky that people didn’t give up on me… so……. I mean there have been periods of time where I didn’t talk to people and they didn’t talk to me but .. we grew past it…

P34: I think a key part of it has been support from family and friends, I’ve been incredibly incredibly lucky erm that .. my family has always stood by me without question, and my friends have too.

P34: I think its just maintaining the connection um and showing that they cared … and kind of … willing to see you at your worst … erm … you know and … you know.. just knowing that they’d be there no matter how bad things got...

P9: I think it’s the the… well it’s the commitment isn’t it… you know the reassurance that you get you know from from them that you are going to recover and get er well again, erm and .. you know they’re with you, they’re by your side when when you need it the most

P4: I think it always feels a little bit like a safety net erm so I know if if things get bad I can just go and talk to my doctor erm and she will kind of get things sorted out pretty quickly for me

P20:… I’m trying to think I mean its .. its partly about just feeling that sense of safety which kind of gets rid of the anxiety, so its partly having somebody there who I trust

P16: I will say what was nice also returning to work from the job point of view is my family doctor er her children were in the school she knew my diagnosis and er she had her children in my class, and I felt well that says something right there that er if she knows my diagnosis and she’s comfortable me, with me teaching her children that’s, that’s great and a lot of the people with whom I work er their children would be in my classroom as well and they or they would want to get them in my classroom and and tell me that and so that was er that was nice as well, as far as maintaining recovery is knowing that people are quite confident in in what I’m doing

P16: … it lets me know that they they don’t judge er me based on a diagnosis, they judge me based on er what I’m able to deliver in the classroom to their children, and er that feels that feels good as far as er, the professionals that I know feel that I’m as professional as anyone else

P10:… just to realise that erm .. some people actually do care… opposed to … having the sort of negative .. erm … negative thoughts about yourself … or about others … so people can see past that which is good

P4: Having pets, erm … that, kind of even on my lowest days I’ve always known that I’ve got to at least look after them. Even if I’m not looking after myself, making sure that they are eating, their litter trays cleaned out, that they are brushed, erm … so I think it is, its having somebody or something to erm to kind of focus on other erm other than myself and like I say sometimes that has, has kind of brought me through some very bad periods

218 P16: so .. I think leaving with that message was was er … was really quite startling and yeah, so that was my mindset I think leaving, was wow should I keep this a secret, will this affect my er career or will this affect my life if I share this information, and so I I had to get that out of my mind as well and that took a while.. er … luckily I think, or maybe not luckily but I am happy that I got rid of that idea that she had instilled in my brain because I think, .. being able to share what I have gone through is,… er… its .. it reinforces in me the fact that its not something to be ashamed of or its not a weakness, er .. and and its been received very well by my colleagues and my students so changing my mindset was er … that would be part of it, what I was told leaving the hospital, but I also .. I had a bit of that thought anyway

P16: I felt a great deal of support from my [management], er I they would tell me when I’d see them, we’re a fairly small community, maybe 5 or 6,000 people and er so when I’d see them and I know the people that work at the school board, and they’d be saying oh we really appreciate what you did in the classroom and the kids cant wait for you to come back so, they knew I had bipolar disorder and they were er quite enthusiastic about seeing me return and they made me feel good to,

P4: I was actually writing out my suicide note, I don’t… I’m sure my mum must have picked it up and thrown it away because I’ve never seen it since erm … but it was when I was kind of thinking about my nieces and nephews that that maybe think hang on a minute, what are you doing here, and its just knowing that one people rely on me, people care about me

P4: I think because I know they’re not going to judge me just for being emotional, or erm mardy, or erm ... kind of anti social, sometimes just knowing that they know that I have this diagnosis kind of almost makes some other things that I’ve done in the past acceptable, erm [..] but I also find, erm , like people… sometimes get quite interested and they’ll ask me erm … kind of erm …different things about erm having the diagnosis erm and sometimes just the fact that they say I would never of known, it it kind of boosts my confidence a little bit, to know, cause I think you always feel a little bit abnormal erm … when you’ve been diagnosed with any sort of mental health erm issue, so erm … I think that having people say to me, I wouldn’t have guessed, I think it it is, it does boost my confidence

P8: Its just… it’s a lovely feeling at times when I have children thank me for what I’ve done, and they come up to me and talk to me and its it its they’re so natural about it and it gives me such a lovely … boost it does and … cause its really genuine and its all heart felt and I find that really nice,

P8: I think its just the feeling of giving, I mean er teaching is giving all the time so I love the feeling of giving something to the children and helping, and something they enjoy doing, because they do really genuinely enjoy it and … and children don’t fake it, they cant fake it, you know if they don’t like it you soon know they don’t like it (laughs) or don’t like what they are doing, and I think its just something about giving, and having the nice feedback, honest feedback and people actually appreciating what I do a bit

P14: …and what I’ve found since I’ve left that [person] is that I can inspire other people… and I never in my life dreamt I could ever do that…ever… cos I was so inward looking … so depressed so self involved …that I couldn’t even … I could never tell anybody that they were doing something great or you know or … even try to inspire them, I have people on a daily basis telling me that I’ve inspired them.. that for me… is profound [laughs] to be able to do that

219 P12: I mean I was really poorly when it when it erm … when you know when I was section at that first time erm.. so .. you know in terms of getting over that.. erm… it er … apart from the hospital in itself , what I remember of course is the family being there [laughs… erm … well just the family, and so many friends came to see me so its just a reminder of … the support network that you have, you know my partner would be there really regularly, my parents would be there… including my dad, and my dad interacting with my partner [laughs] which was interesting to see erm … so … yeah so so that’s really important

P4: … I think maybe it is just getting that acceptance from from somebody else

1b. Having P11: …it seems a bit silly, but thinking of like the PIP payment that I got, like practical and that, well no sorry its still DW..P, isn’t it, what’s it called, DLA, DLA, so er accessible yeah, so I got DLA when I first got diagnosed and erm, that was with the help support of someone from like CAB and that was massive because, .. that gave me more independence because it meant that I could go out and buy just small things.. and I know it sounds a bit ridiculous but like that, being able to have that was massive, yeah

P34: I mean I was lucky I worked at a job where we had a union, we had sick time, we had but you know erm we had unpaid leave time, there were all kinds of things, so I had… again that level of privilege to be able to do that erm … you know or like wake up in the morning and call out sick erm … and… you know in in not everybody has that…

P16: … you can bank er sick days, we call them, and so I had a full years worth banked as I I mentioned to you on our, last time, and so when I went off work, er I I had a full year that I could recover, with with full pay, and so having that I think helped in the recovery […] and I think having a steady income the full time I was, er .. recovering from er my hospitalisation, that’s helped in not feeling worthless, contributing to the er to the family financially, I think if I if I were to have lost my income, that would have been quite bad

P14: … so at that point I had to call Truehope back, now at the beginning they called me every single day, to see how I was doing, they have they have a whole group of people on the phones you can call them, it’s a free call, you can call anytime of day, and they have somebody on call on the weekends, so … when I went into a suicidal episode a couple of times coming off the drugs, I had to call I and it was almost, it happened to me on the weekend and they talked me right through that suicidal episode.. yeah, it was amazing, they’re incredible,

P1: I think very importantly where it came from, was erm, the person who who diagnosed me and and just was responsible for my care initially was a psychiatrist, consultant psychiatrist and he was a really really good consultant psychiatrist and he used to ..come and do erm home visits rather than I having to go to the mental health unit…

P34: second really for me has been my work erm .. and I have been really lucky to have employers who were supportive of me […] I have had periods of time where I have not been well erm and they gave me what I needed to be able to … do the job, I mean I had times where I would go to work XXX so our job was to answer the phone and … talk to people about what their XXX, but there were days I would go to work.. and … after one call and be like I’m outta here I cant work today and I’d go home [laughs] and then I would try again the next day and then I’d maybe make it through two calls and then id go home erm … and there were long periods of time where I felt like that

220 1c. P4: I think it was just in in talking about it, and obviously they’re trained to kind Receiving of ask erm … questions that that guide you in the right direction so, erm if I’d answers and just been allowed to kind of talk, I’d have talked them to death but maybe not guidance got to any erm, kind of… erm conclusion but I think because it was erm guided that was very helpful

P11: I think… because I’d spent so much time with different GP’s, and they just kind of pulled blanks all the time, and just didn’t know and I’d have like questions and at [support group] there would always be a really good answer, and it made sense as well, and I’m like and I’m feeling like I’m not on my own now, I just felt like quite isolated, and like it’s it’s distressing like to feel to feel like that, but then when you’ve got people with you, even if you are still distressed, when you’ve got people with you that can tell you that its ok actually this, it just all feels like a lot more easier to cope with, yeah

P12: … you know when I when I see mental health, people with mental health who do not get that kind of support, and you know are in a very difficult situations, I just think I was really lucky to to be in a place where erm, you know both the hospital treatments, erm and environment and what I got you know, er I just remember when I was in my high phase erm you know, I got massage therapy and exercises etc so, it was very, very good service

P11: she [leader in support group], well she just knew exactly like where I was coming from and like had an answer for everything, in a good way and like was able to like say like.. you’re going to be ok, like this this is it now, you’ve been diagnosed you’ve got the medication, you’ve got this knowledge now that you’ve not had before, … erm you’ll you know you’ll be able to like recover really well, so its that that like hope from someone else as well that like was quite fundamental I think in helping me

P16: … it made me feel err I I think I was talking about er feeling hopeless back when I spoke to you the last time, and, for her to er acknowledge that you know, sometimes it takes a year for people to to er get the right medication and so that they are back on their feet maybe even longer, sometimes people do need that sleep, that’s what your body’s telling you, erm for her to to walk me through it in a very non-judgmental way was was incredibly helpful

P16:... one one thing that that’s a huge influence that I I I should have mentioned earlier I suppose is just a, I gave myself permission and and really under doctors orders, er not to.. try to do everything I was doing prior to being hospitalized … […] and that is advice that I I took at the time and I kept .. so far so this is er, this I my [XXX] year back since since I was hospitalised and I still haven’t er taken on all those stressful activities, so that was great advice for helping me remain at work I think

P16: I respect the expertise that people er have, so er I I er you know, if it comes to learning physics I I would want someone in my classroom but when it comes to mental health er I I know what my personal experiences are but I haven’t done the studying to become a professional in that field so I I respect getting to meet with someone who put in the time to know to know er the details that you need to know in order to give professional advice, so I respect getting to hear advice from someone whose put the time into studying the field

P33: it was through a… CPN the community psychiatrist nurse.. erm… he recommended me do that … to get myself back and back on my feet. … I think it was really important to… to get me on, get my foot on a ladder again

221 P9:…appointment interview if you like with one of their sort of specialist bipolar erm doctors up in [XXX], which which I you know took up and .. yeah and I think that was very you know very helpful, for me and also to my erm .. you know my sort of medical team, my psychiatrist and doctors down here, who probably weren’t erm … as .. er erm qualified if you like with with bipolar as the chap I saw up in [XXX], so you know his report I think did did help, certainly with the medication side of my erm condition… his recommendations were taken up by you know by the team here and I think that you know did erm did have a big impact if you like on my recovery

P20: I think that’s what I get from [boyfriend] is that … he he’s kind of he’s a very smart man, he’s very matter of fact and he’s very compassionate so he’s very much, you know he kind of just undermines these kind of negative thoughts [laughing] that I’m having erm … and I think that’s what it is and I think really that’s what kind of happen in the therapy its about someone reflecting, reflecting to you what what you’re thinking and what you’re saying and you’re realising that it doesn’t really have… that much of a foundation

P34: now … you know and I think a lot of this was learning from my peers that the … you know if there is a relapse that that’s part of the recovery you know that its not a perfectly straight forward road all the time … um … and you know I always used to think that one thing would happen and complete catastrophe… everything’s miserable, nothings ever gonna work out again and its just not like that now

1d. Valuing P11: I think its massive, cos if if you know, spending time on your own you interactions just get more in, introvert and into those own thoughts, they just kind of take with others over then, yeah, I: ok ok, so what does talking to people and kind of socialising do do you think for you? P: yeah, its it’s a distraction and its getting stuff, like, off my chest, like maybe stuff that might have been upsetting me, and that’s that can be really helpful as well... and just again not feeling like isolated and alone, yeah … you know being part of a wider community as well, yeah. oh yeah so I used to go to the XXX centre and go to like a knitting group, so that was nice, that felt, like I felt part of that community, yeah

P29: well I mean sharing, you share information with other people about what’s going on …in the rest of the world instead of being in your own little world you know cos I work at home um … so I think its best to get together in person, I think that’s more powerful than the internet but if that can’t be done then the internet is there … to connect with other people … that connection is help helpful too, we we help to empower each other through that connection and to revitalize each other, that connection

P29: I made sure, social connections are really important, um in keeping grounded is one of them and then … um in helping to prevent depression … I actually you know you can think of like not being grounded as being a little bit manic too like being out there or floating, um so in terms of keeping like in keeping you like more moderated erm erm in your mood, and keeping you grounded, being with other people really helps.. so if you’re by yourself a lot, like when I was doing book keeping I’d be alone all day in the house like working on the computer, er you can like to, if you start to like get really spacey or leaving your body, dissociate or whatever, if you, theres no other people around that can keep going and just fly off and you can get really worse, um so when theres other people around they help to keep you grounded, so I made sure that everyday I went out, If I was in the house and I was working you know, on my business stuff at home I made sure that I went out … and sit with other people, I called some one to go out to lunch.. I went to town and just walked around where there were other people if I needed to be with other people… um and being around other people I found was really helpful to stay grounded

222 P11: yeah, I think… because I’d spent so much time with different GP’s, and they just kind of pulled blanks all the time, and just didn’t know and I’d have like questions and at moodswings there would always be a really good answer, and it made sense as well, and I’m like and I’m feeling like I’m not on my own now, I just felt like quite isolated, and like it’s it’s distressing like to feel to feel like that, but then when you’ve got people with you, even if you are still distressed, when you’ve got people with you that can tell you that its ok actually this, it just all feels like a lot more easier to cope with, yeah

P29: I made sure, social connections are really important, um in keeping grounded …um so in terms of keeping like in keeping you like more moderated erm erm in your mood, and keeping you grounded, being with other people really helps.. so if you’re by yourself a lot, like when I was doing [job] I’d be alone all day in the house like working on the computer, …., if you, theres no other people around that can keep going and just fly off and you can get really worse, um so when theres other people around they help to keep you grounded, so I made sure that everyday I went out, if I was in the house and I was working you know, on my business stuff at home I made sure that I went out … and sit with other people, I called some one to go out to lunch.. I went to town and just walked around where there were other people if I needed to be with other people… um and being around other people I found was really helpful to stay grounded

2. Recognition of the problem

Recognising the P34: yeah no cos I mean there were there were a couple of times … existence of a where I had to go in different kinds of proceedings talk about stuff that I problem had never talked to anybody about … and I think that was probably part of the reason I was so resistant to actually having certain conversations … erm because I thought it was completely.. intrusive and unnecessary for it to have happened in that arena erm and then I realised… it just wasn’t helpful anymore to me … to not talk about that stuff… so .. but it took me getting to the point and then we finally did and then I was like, ok now I can move on.

P29: well I think hitting bottom you know I mean all the awful things I went through, the drugs and the painful side effects and then, and then having the erm when I when the lithium became toxic in [date], I I had the flu then, I don’t know if I went over that, so I mean I got really sick and then I ended up in the hospital .. and they had to take me off the lithium and I had the vertigo and .. and um I had slurred speech, you know I mean that was like a really like a near death experience… getting close to death there, I mean I I was a mess I could barely walk and and so that experience that was hitting bottom, its like .. you know I have got to do something to change because this is. the mess that I’ve made of my life, where I’m at right now… that was the impetus you know, the hitting bottom was the impetus I had do something … so um … yeah and I mean this, I yeah I have to use a lot of self discipline … in my life to keep on track now, whereas before I didn’t think that self discipline was important, now it’s a very important part of my life, that I really …if I find that I’m not focusing and doing too much I have to like actually … use self discipline to get back and um on track

P14: I’m the kind of person that I want to know what the problem is and then I will go and research it and do something about it so I just wish id known 7 years earlier because I probably would have a better relationship with my children at this point

223 P14: Well I you know, honestly erm … I wish that the man, the therapist that I saw aged [XX], that urged me to get on medication, I wish he had told me himself right then that I was bipolar because it would have save me years of trouble on drugs, years cos erm he, I I had his notes erm … accessed by a later therapist in XXX, and and she said that he had written in his notes that I had hypo-manic tendencies…and I, you know if I’d of know, if he’d of just said it to be, XXX I think you’re bipolar … this is what it is, this is what we need to do

Views on P1: For me I found a… diagnosis really helpful, actually, because it receiving answered, for me […] so for me it was the answer to a 44year old question diagnosis - positive P1: …that experience had put a new sort of light on it so so for me actually the fact that, you know, I had a diagnosis is erm. that can be treated psychologically, pharmacologically whatever erm I found found a very useful thing.

P11:… I think I’m really going to have to say a diagnosis, and that access to medication, because I don’t, I truly don’t believe that without that I would have been able to build up to this… I just needed, that like stability, and understanding, to be able to achieve what I have done, and I know that wont be the case for everyone but for me, its like genuinely been the major thing

P8: When I was diagnosed I think, as I said I wasn’t surprised, but I think in a way a relief that I knew that … there was something wrong with me, it wasn’t, you know literally me just going through mindless mood swings like everybody else does and I’m just thinking this is awful, no I was diagnosed with having quite .. serious you know bipolar erm (sighs) so in a way it it made me relieved and maybe a bit annoyed I hadn’t gone through it a bit earlier but I think I just getting it, going on without doing it, you know …

P11: I think it was just the full process of like you know, getting a diagnosis, getting the right medication, and then being able to properly like look into it and research it myself

P20: I think the thing was, I mean I’d had, I’d had glandular fever when I was 15 …and I’d been really ill with it and then it had gone to my liver or something and I’d missed erm … I missed kind of about two thirds of my firth year at school, I was really ill, I was kind of tutored at home and I didn’t go into school and things like that and then as it dragged on they said it was chronic fatigue, I had constant headaches and I kept going to the doctor and erm you know they said it was chronic fatigue but there was nothing they could give me, and so I I spent kind of 3 years feeling very unwell erm … very very low erm tired all the time and things like this and kept being told there was nothing, and I didn’t know how long it would go on for, what would what happen and so initially having this kind of label of some kind of illness that there was a treatment for erm… was a relief erm and … it kind of it kind of explained some of, explained why I was feeling so… bad erm and so down erm and so it was kind of a relief that there was, it was something tangible erm … but also just really scary erm … and as I say, you know its its not something that’s nice to have a diagnosis of and it erm, and so you know it was very double edged but I remember thinking at least this explains what’s wrong with me and its something medical kind of and .. there’s there, they can give me a drug for it

P4:…so for me kind of the big thing in being diagnosed was having somebody else actually recognise the symptoms in me

224 P11: so personally I was like really happy to have been given the diagnosis, I’d spent a lot of years before then erm, researching and trying to work out what it was that was making me so unwell and erm I’d had, like I’d been it was told it was possible like seasonal affective disorder and then just treated for depression and then they started to look into it bit more and erm truly thought I think I think this could be bipolar. It was actually it was a friends mum, who was a psychiatrist who just mentioned it she said it does present that it could be that, and then I looked into it a little bit more. So by the time I got to the community mental health team at XXX and was told I think its like bipolar, that kind of made me really happy and then I had like a manic episode after that, but then was put on the right kind of medication and kind of brought back down again

Views on P20: I think the hardest thing when I received it was… knowing what was receiving me, I lost the sense of of what was me, or what was the illnees, and it was, diagnosis that was really hard to grasp, and I think, I was living at home with my - negative family at the time and I think my family found it hard as well, and um .. and so… I think naturally I can sometimes be quite exuberant I think we all can you know [laughs] and um I started to get scared of those kind of feelings, and so if I was kind of feeling really up and I was really chatty and things like that erm quite naturally, my family would be like ooh are you sure you’re not going to high …

P20: …it left me I I over think things anyway, it left me really kind of questioning erm you know am I am I genuinely happy? Does this mean that I’m going high? Does this mean that I might be getting ill? and so it made me kind of a bit, a bit kind of unsure about what, about what was really me and what was the illness, and what was the erm whether what I was feeling was genuine and things like that, and that left me… I found that that was probably the hardest thing to cope with.

P20: … it left me with certain fears as well, that.. if I push myself too far, I think the thing was erm I initially got ill when I was doing my exams erm and then obviously I went into academic work .. and I always carried this fear that if I really over pushed myself at work or did stuff I’d I’d make myself ill, so it left me .. it left me with a real anxiety about making myself ill and so I was quite an anxious child but I think having the diagnosis increased my kind of anxiety and increased.. and made me feel quite insecure because I wasn’t sure erm .. I wasn’t sure whether … reactions I was having to people, things that I was feeling were genuine feelings or part of the illness or it was me, so it left me having this real sense of kind of loss of identity I think, after having it so… and I think that was the hardest thing to cope with it all, how it made me think about myself and question myself.

P14: …it was actually pretty frightening to hear the word bipolar because I’d known somebody a couple of years before that lived in my apartment complex that was bipolar …

P29: So my view is that erm … I would like to see add to the diagnostic and statistic manual erm a new category for spiritual emergency, and I er, I think it was the DSM-V I think they add religious problem, religious spiritual problem, but I’d like to see them add spiritual emergency … because I think that erm for me […] when I was in the hospital and the psychiatrist is talking to me, I mean that’s not available … as a diagnosis so in trying to figure out how to diagnose me they just diagnosed me as bipolar so I mean I do have some characteristics that are.. you know, … that you would describe as bipolar but erm … so id you know, I’m still a little bit confused

225 P20: I think the diagnosis at first was a relief but I think.. being somebody with bipolar disorder was something that was very hard to accept for a very long time

P20: I think the hardest thing when I received it was… knowing what was me, I lost the sense of of what was me, or what was the illness, and it was, that was really hard to grasp, and I think, I was living at home with my family at the time and I think my family found it hard as well

P20:… made me feel quite insecure because I wasn’t sure erm .. I wasn’t sure whether … reactions I was having to people, things that I was feeling were genuine feelings or part of the illness or it was me, so it left me having this real sense of kind of loss of identity I think, after having it so… and I think that was the hardest thing to cope with it all, how it made me think about myself and question myself

P20: I think as I say it was kind of this this loss of a sense of self and this loss of confidence and you kind of loose confidence … in your own feelings so you you’re never sure, or I was never sure when I was younger if it was me that was genuinely you know, if someone had done something to upset me or I was getting too upset because I was depressed or if I was I you know if I was genuinely happy or if it was

2. Believing that things can change and not giving up

P8: …it [therapy] yeah it helped me, I think it did, it gave me a focus and thought of actually learning some things here that can help me

P29:... I think I think what happens with us is, we go through.. everyone has traumas that they go through in life and you know I’m no different, I had all these traumas that I went through as a child and then you know teenager and different phases of my life and um … I think that um … the difference with a more of a Christian understanding is that there’s um ahh … there’s kind of um … that that there’s this, after you go through this pain there’s a light at the end of the tunnel … there’s renewal .. there’s new life um …

P1: well.. I just think just focus on the little things, even if they are little things, little tiny things ..that you can do .. or you can say to yourself, or others can say to you.. that.. have even a slightest effect.. then .. then that’s a start.. and .. you know, the fact that a little thing can have an effect, or anything can have have a small effect, that’s really hopeful because you know, you can start building on that.. so you might need to carry on practicing, you might need to just carry on working at it

P34: Well I think one of the things that I was really lucky, is the first time I was in the hospital erm there was a peer support group that met at the hospital erm so that…. even that very first time… erm… you were seeing people who were already living with the diagnosis.. and like they had a life

P34: Now that I run a lot and I really, and I’ve been able to accomplish things erm just by endurance er… running and… thing things that I thought never thought in a million years I’d be doing or be capable of doing .. so I think that has showed me that with persistence anything can actually happen and you can get through things um …

226 P8: Well… I think its like, I I would say I mean if they are on medication, I mean obviously medication might be something they have to seriously look at to start with, to give them a, as I said a foot hold, to get stable, but don’t give up, cause I nearly gave up after having the lithium I thought I’m never gonna touch drugs again, so I thought that’s it I’m not gonna, you know if that’s what drugs do I’m not going near them, and.. so its almost like you’ve got to have faith that maybe the first drug you don’t, might not work but do try 1 or 2 others, I think now a days there’s much more of a cocktail, or more of a range of a drugs and much more.. better managed I think they are now (sighs) I’m sure there’s, you know a whole more a whole range of them now which people can maybe be put on more accurately shall we say, or … put on a drug that suits them better, so give it a go, if it doesn’t work try something else, or get the doctors to try something else that’s one thing I’d say maybe keep trying that if you get something that works for you

P20: I mean I’m not perfect about it, as I say I I’m eating particularly well at the moment but I know that you know, I know, I can, I know that even when I’m not not doing everything .. completely brilliantly I can do enough to keep myself.. I don’t get the sense that I would ever ever go manic again or ever be that low .. erm as long as things stay as they are

P1: One of the reasons is to say well erm ... this isn’t just something that happened to me.. and I don’t know if its going to happen again, and its its an external locus of control thing, but its something that happened to me… and I’ve got through it ... and I know all these various ways that I’ve learnt to make myself well and.. it is important it is possible for people to get well, erm.. after being unwell with bipolar … erm.. you know look at me, I’m not talking about me, I’m just you know just a hypothetical person, look at me you know, I wasn’t very well at all, but now I am .. and .. and that’s just sort of saying those things outloud I suppose gives you more belief in the control that you’ve got over things…just just that, its really important to believe that by in large, these things are within your control.. I think, as with many of these things its sort of a pendulum and generally, you know, as long as you keep the pendulum just going ... oscillating away that’s fine

P9: I don’t think there’s any really one thing XXX with it, I think it’s a combination of all all this erm stuff really, erm you know medication… yeah you know all all the factors that come together for you know for a recovery, that’s we’ve been talking about, no one specific thing, erm but I do, you know, and I do you know when when I’m speaking with people at the bipolar group, you’ve gotta you’ve gotta have some fight in you I think to, to you know get on that journey of recovery

P9: … so I do think you know, with with recovery with bipolar there there is probably quite a lot that that person has got to do for themselves as well, if that makes any sense you know even, you’ve got to put in the effort and the fight, I think yourself and and say that you know that I am gonna get, gonna get through this, I’m gonna get better erm… and and you know I’ve done it, you know with with all of things that I’ve spoken to you about, you know the the help and support from from … everybody around me, helped me you know get you know get through that journey and recover and and and enjoy you know good, good health and you know living, living life as I’d like to

P9: ….I think, I do with recovery, my recovery I’ve had to you know dig, dig deep erm at times, erm cos I don’t know if I I said to you previously that erm my [relative] took her own life erm not not that long ago and she you know, she had a lot of her own mental health issues quite similar to mine, but she, you know she just couldn’t .. you know kind of get herself erm, out you know out of it and er unfortunately you know she she took her own life because I guess she you know she thought she never was gonna get well again.

227 P34: things that I thought never thought in a million years I’d be doing or be capable of doing .. so I think that has showed me that with persistence anything can actually happen and you can get through things …

P34: I think .. a big part, and some of this was me erm .. was willing to be willing to be to try something different erm … you know I spent a lot of time going along to get along erm you know whether that was like the compliance with medication or whatever, erm I think learning non- compliance [laughing] was probably one of the best things .. for me

4. Instinctive curiosity

P16: I did a lot of er, I did a lot of research on it as I was meeting with her, she gave me a fair bit of information er as well,

P20: I think, I’m also very, quite curious about things and so, my first instinct whenever I find out about anything is to do loads and loads of research, and I so I went to the library [laughing] and I did loads of research about bipolar disorder and things like that

P20: its partly … as I say I spent a lot of time.. cos I did my PhD on mental illness I spent a lot of all the philosophy books about mental illness and things about diagnosis and diagnostic categories and erm the meaning of kind of mental illness and and so I did lots and lots of reading about it and lots and lots of reading

P11: … I don’t I suppose just things made sense, because before it was I just didn’t know what was going on proply, and erm, and it was just and there was hardly any periods of like feeling ok and when that changed I’m like ahhh this is like amazing, like I’ve got more time now, to like do stuff so that was like a big a big change, and that really helped me, yeah

P11: I just didn’t know what was going on properly, […] just try and have more insight, just look into it as much as you can, like read other peoples stories.. and erm yeah see if you can like relate to some of those

P29: When I was first diagnosed I just you know, took everything they were saying as the absolute truth … so um you know they said ok you have a disorder in your brain and you’re mentally ill and um, I mean at first I thought I was going through a spiritual awakening but then when they said oh well you’re mentally ill then I you know I, there is some of that in my family so I just... figured well they must be right and I was a good girl and I took all the meds so, but then I, you know, I got sick from the meds and then I started reading about spiritual emergency after like 3 years on meds … that was when my attitude starting changing

5. Medication

For example, P9: …not a cure [but to] stabilize …the whole condition, you know the medication to mania and and the depression er which I think it has, it has done, or it has stabilize certainly erm contained it more

228 For example, P8: …but I mean, if it hadn’t been the citalopram I don’t think I would have as the foothold got to stage now where I’m in a state now where I can talk to you like this for change and so, I mean it sounds awful, I shouldn’t really so yeah, but I think that was almost like the life saver for me, the citalopram I mean literally was a life saver I think I couldn’t have kept going much longer, the way I was feeling and I mean keep going through these swings and to find something that actually stopped in and I could then actually have a foot hold in this you know in this stable ground , that really did make such a change to me that did, so , that is the one thing I think that stands out was was a pivot, that’s the pivot point shall we say everything else was very important but that was the pivotal thing which really seemed to, you know, just work for me for some reason

P34: Well I think .. a big part, and some of this was me erm .. was willing to be willing to be to try something different erm … you know I spent a lot of time going along to get along erm you know whether that was like the compliance with medication or whatever, erm I think learning non- compliance [laughing] was probably one of the best things .. for me

P8: …it’s almost like there’s no option so keep living with it and that that was the awful feelings, I think there’s nothing to be done about it and this could go on until I die, and .. it, that’s an awful feeling it is, and that that was quite a, it makes you feel very hope, helpless sorry helpless and hopeless, yeah helpless and hopeless and of course the citalopram when that worked, it gave me that hope and think oh gosh something is actually working at last, and I can feel fairly normal (laughs) and, and then as it said it gave me the strength to do the other stuff as well, or more of it

For example, P20: I was on the lithium at first and its it’s one of these things isn’t it there uncertainty or is part of you, I mean I've never been one, I’ve always been ok with taking double edged medication but there is part of you that thinks … with the mood stabilisers, sword of meds I see the difference with the anti-depressants you can feel the difference erm when you take them, but you always wonder what would have happened if you hadn’t taken it all [laughs] erm I mean I I with the lithium I was never sure whether it was really doing much, erm and then I did actually stop it erm .. I’m trying to remember when I stopped it I had a period of time I think between when I stopped it and when started taking quetiapine, its hard to remember now, but it didn’t actually it didn’t seem to make any difference to my mood so I think I took that drug for a very long time, from when I was 18 to when I was … i must have been er about 35 I cant remember, anyway a really long time, and I’m not really sure how much it did for it

For example, P8: I don’t wanna risk … doing that obviously (laughs), but erm I think I’m reasons for a little bit too scared to stop taking the drugs, and … erm I’m not quite at staying on the stage where I think, you know well I think well why rock the boat

P12: …it must be, I I don’t know enough, I mean if you think about the medication.. dealing with a chemical imbalance, its doing its job very extremely well because, it did make me feel well it stopped me from being high and low etc, and and that kind of, the real depression which erm … you know I felt, erm … so yeah.. I mean where, we, when I’ve questioned my, actually its its been when I’ve talked to the doctors they’ve said what do you feel about this, erm … but because I get, my blood gets tested regularly as long as theres no .. bad effects on anything.. then .. why risk … going off it.. so it it it must have helped is is all I can think of

P33: I mean its working so I’m happy to stay on it, I don’t think… erm I don’t think I need to come off it or increase it or anything so … its good… the way it is yeah

229 P33:… I think if … like say I was like on holiday or something and I didn’t have enough medication, didn’t have maybe say I didn’t take it for like 2 days or something, I’d feel really strange, so I knew it definitely was doing something … so… I’d always stick to it, or always take it

6.Psychological therapy

P11: I’m just trying to think, I think er I’d had like bits of therapy like in the past, and I felt like I’d kind of like been able to put it all together once I’d had this second lot of CBT, and everything seemed to start making sense.

P34: I think ... it… that was something that made a difference too, I think a lot of times when I went for therapy … I just never really talked about stuff and then I I worked with one particular therapist and we dealt with a lot of the the… old crap that I’d just really kind of never, that I had always avoided and not really talked about erm … so I do think that was a big pa… it was a substantial part … erm …

P14: …you’ve still got some little… odd things going on you know, behaviours or thinking and to have someone like [therapist] that kinda helps you tweak that … it was like once I started going to him, and he was the first person after I started taking Empowerplus that I went to one on one counselling … erm … its like its snowballed and I just got better and better and better

P16:..I guess one one thing I I kind of reached a point, where I couldn’t even walk into into the [workplace] and so, and so she would er … she would suggest ok this week try just to drive up and and just park outside the [workplace] and then next week erm maybe try to go inside the door, so so er some of the real road blocks I’d put in front of me, she helped tear down, and and and probably within in er, our third or fourth meeting I was back in the [workplace], not [working] .. but at least I was in there, […] but she helped me work through .. er the anxiety I was feeling, just step by step, not trying to jump all in at once

P20:… he also refered me to a psychologist and … I saw her … I’m not really sure for how long, maybe 6 months or something, it was a while that I saw her erm that was really helpful erm … and so yeah I saw her on and off erm until I left [place was living]. erm and it was just I think the thing was I think … I mean its hard to say with with psychology appointment what was really.. I think having that space and having somebody I used to get so anxious and like when I anxious and upset in the session’s and stuff it was all about focusing on your breathing and being in the moment and and staying calm and it gave me this kind of soothing space where I could kind of poor out .. all the worries that I had

P29: …my talking psychotherapist … I really really cried a lot… that that was… so I did, that was a lot of discharge going on, and I, we also, my husband and I met with my talking psychotherapist and that was really a turning point cos we had a lot of problems in our marriage and that, you know it had a lot to do with my crisis, so um that I you know, and then I also started going to [XXX]? psychotherapy, we started going to um um couples counselling… that psychotherapy was very important because that brought out a lot of more intimate discussion between my husband and I .. things that we were afraid to talk about

230 P9:… just trying to think of anything sort of specific, erm [pause 5 seconds] you know some of, you know of the the you know CBT ideas were good you know sort of changing you know changing ... the way I thought about things erm you know they they erm they’ve they’ve worked […] maybe some of the the negative thoughts you know, turning them on their head and you know, turn turning it around erm … you know there’s … help you know the getting out of that, you know depressive... state, as I say its not an easy thing to put into words erm … but it it does, it does work but I think it doesn’t work immediately, it takes time and then you know you reflect on it erm, you know, at some point you know down the, down the line and, I suppose mindfulness as well very, you know that’s a very … erm … important part of my erm wellness I suppose, and that was something that came up in in one of, you know one of my sort of.. er, I think with with you know in a 1:1 …therapy

P11: …like from my memory I can remember, just kind of thinking it was linking to the thoughts and like those kind of like thought challenges, and the things related to the low self esteem and stuff, and .. when.. it was kind of like oh I don’t I don’t need to feel like this actually, I can er, I can like help myself and not not feel like.. quite low, yeah.. in confidence, rather than low in mood yeah

7. Becoming the director of your own life

P29:… so finding boundary …well I mean it allowed me to then um be empowered. I I put a little sign above my desk that said I’m the boss of me … and that was very powerful because I became the director of my life instead of letting everybody else direct me

P9: I guess you know, seeing my [relative], … erm that made me more determined that I was gonna, you know that I was going to get better and I was going to stay well, erm .. yeah I think and … you know and others you know around, sometimes you you can sort of see that you know the ones that probably are gonna you know recover, probably quicker than others, erm … and… dunno.. its…. its you know it’s a hard thing to sort of put over to, to convey to somebody I think really, whose really really bad but as they get a little bit better, you know I think you do realise that you you’ve gotta put that effort in yourself

P20: I think actually .. saying to myself right I’m actually going to do steps to kind of make .. make this big change ermm and address everything, because I hadn’t, as I say I hadn’t had any so actually going going to the therapist made it made a really big difference ermmm

P12: … and also having to deal with everything myself, that was my attitude, I had to have all the answers … so there was a kind of a opening up of me, and that was significant in terms of what, how things developed from there, as I opened up more and erm was much more myself, erm … it just became easier to erm … reinforce the fact that I wanted to .. carry on being myself, in every way …[laughs] .. so yeah …so that everyway meant you know, when I was made redundant, um .. [X] years ago, that’s when I made this big career change and I thought this is the time, because I have, feel so much better about myself and about …how far I’ve come, this is the time to go to, to really do something different ..

P9: … you know you can’t rely just totally on those around you and medication, erm to get you well, you you’ve to put the effort in as well.. er its probably a very important …thing

231 P12: …so it is a strengthening of … yourself, in terms of you know, owning your your thoughts and owning the fact that you make the decisions… I mean it might, you know, it it kind of didn’t seem like that much but it was a, it was a big thing to get to. Because in the past, previous to that I kept worrying about what everyone else would think and, you know, pleasing others, and parents are included in that, pleasing your parents because this was there vision of what you should do or what what things should be like..

P12: … it wasn’t one specific thing, it wasn’t me sitting down suddenly and saying let me focus on this, it was like a gradual thing, that, it was a thought process and a a kind of a few, I dunno, events happening, where I thought well yeah you know, I I I’m doing this and I like it, and and and you know as I said earlier, I, when.. when I did finally come out of the closet that was a very liberating thing, so that helps, so it was a gradual help of, a gradual process of, of helping yourself to … kind of get to a point and you know in a stronger and stronger way, of thinking well this is me, this is what I want to do, this is, these are my thoughts, these are … this is what I want, erm .. so

P12: …so that erm in my mind I put to a combination of the medication working, but also … erm … er … with the support of my, everybody around me, er and my own kind of determination that [laughs] this is er an opportunity to get things right, was to say.. erm.. the main thing I think I did was .. to look at … outside forces and why, you know I was doing the things that I was doing , I I, .. just a bit of background, I mean you know I’m from [location] originally and you either have to be an engineer or a doctor to be deemed to be successful .. and I .. er did an engineering degree not what I wanted to do, but I was pressurized into doing it in several ways.. so it’s a kind of a standing on your own 2 feet type situation, erm the other thing that happened, erm … so there’s that element, really getting to know your mind as to what you want to happen, so that’s a very important aspect

P12: …so its just becoming stronger in yourself and… being clearer and stronger, but also sticking to it and saying right this is what I want to happen now. so that to me is the most important and essential thing, that shifted

P1: I think its really important for people to ... if at all possible, if they can... talk about their psychological state, so… erm… so if they have been unwell and now they’re well again ... erm… I think its important that people say that, and that people let other people know, erm ... because ... one of the reasons is to say well erm ... this isn’t just something that happened to me.. and I don’t know if its going to happen again, and its its an external locus of control thing, ….. but its something that happened to me… and I’ve got through it ... and I know all these various ways that I’ve learnt to make myself well

P14: I mean to me… and I I’ve explained this to a lot of people when people tell me “oh they’re so controlling”, er you know their mentally ill children or whatever and I’ll say “ yes they are … because they’re so out of control inside of them, thats all they can do, is to control the external … everything externally because they can’t, they can’t, they don’t know how to do it within themselves… so they .. “ that’s what I thinks why I was such a good cleaner … why I was such a good… organiser… I was organising and cleaning from a very young child… … its er its er a way to feel like you’re in control of something

232 P12: …all I can say is going back to what I have already said [laughs] and that was that was really erm, …[6 second pause] examining what I wanted to happen and what I wanted from life and not being held back by …others, other peoples erm ideas about what my life should be about, so it is a strengthening of … yourself, in terms of you know, owning you’re your thoughts and owning the fact that you make the decisions… I mean it might, you know, it it kind of didn’t seem like that much but it was a, it was a big thing to get to.

P34: …actually because … realising that you know that I I, cos I’ve written this you know and I’m not the first one to say it but like doing the same thing over and over and over again expecting different results and I’ve and I finally realised “oh that applies to me too”.. like I have to do something different [laughing] if I want something to change

P34: I think really when it comes to mental health stuff … I think it it does show that people have to find their own path to recovery, whatever that means for them and that forcing anybody down a path, a particular path is … a hell of a lot more likely to backfire than it is to help erm.. and so you know I think people just need to know what there options are and know that there are people here who will answer questions

P34: I do a lot of stuff on a volunteer basis erm … you know I have at times on and off been a lector at my church so that’s been … something that’s in and out of the toolbox depending on my mood

P20: I think yeah the thing is .. I think erm I think what I .. the thing that was important for me to learn is that its not just gonna just go away, you cant just get rid of it … get rid of it [laughs] errrmm any of the drugs that you take they might kind of lessen the impact and it is about… it is about finding multiple things ermm er that that suit you

P1: …you’re just generally reducing the load of erm erm of stimulation, you’re reducing the amount of stimulation .. you’re controlling the amount of stimulation that you have, so you may, so instead, I might pick up a book… whether I pick the book up or not is up to me, I may turn on some music, if I turn the music on its up to me and I may, I probably won’t turn on the television as I don’t really do that a great deal bu, you know, picking up a book or turning on the music that’s something you can control.. erm… the way I do it, in fact, I have all my notifications for everything turned off anyway so…..

P1:…its just just another way of regulating things, in the same way that going for a run is … you know, you can regulate things by, you know allowing yourself access to… social media, email, you know if you sit yourself down and there’s loads and loads of stuff..erm.. that’s something that you’re choosing to do

P8: I’m in control of it maybe now, yes that’s a better way, (I:mm, ok) instead of it being in control of me, I feel that now I’ve got the upper hand shall we say, what with the drugs and this other stuff, I’m actually in charge of myself a lot

8. Changing how I think

8.a Comparing Reflecting on what things were like in the past (8a1): the past and now P16: I guess I … I it wasn’t, having bipolar disorder wasn’t something that er … that I I wanted to have, I wished, I wished it er away in anyway possible.

233 P20: …maybe I’ll go a step maybe further back erm … I said before one of things that I was really really scared of and that used to kind of keep me feeling quite down because I was so, because I was so scared of getting high I used to have quite a lot mood quite a lot of the time because I … you know becoming really happy was scary to me and things like that

P20: I think a lot of what I did was I would drive myself crazy worrying about the past, I’d drive myself crazy worrying about the future, I’d never be I’d never be [laughs] present on a particular day, I’d always be scared about things that were going to happen erm … dwelling on things that had happened in the past

P34:..that was part of it cos I know that there were lots of times where you know when I talked about asking questions, you know I would go to therapy and they would ask me stuff and I’d say “yeah I’m fine, its fine, everythings fine” and like it wasn’t fine but I just didn’t feel like talking about it

P20: I think … I think the thing was I used to .. I used to really worry you know.. if I’d had a past relationship or if there had been anything like that I would … I would lie in bed and just go over and over and over it and over it and … I used to just re run scenarios and things that had happened in my head again and again trying to think what went wrong , what I’d do differently what was this and what was that…

P8: …it was impossible to do that knowing I was going through these wild swings and its… very hard to kind of plan a life when you don’t know where you’re gonna be in six months time (laughs) you know or roughly, six six months to a years time you could be in a good phase or a bad phase so its hard to do any planning or any (sigh) you know, its that kind of, you know, you’re you’re not in control really, you’re not

Recognising the progress I have made (8a2):

P33: It was important in the fact I had gone full circle. I had attended one of those groups when I was 16 and left within a couple of minutes.I was then chairing those meetings and it gave me a sense of pride in doing it.

P9: … the negative thoughts you know, turning them on their head and you know, turn turning it around erm … you know there’s … help you know the getting out of that, you know depressive... state, as I say its not an easy thing to put into words erm … but it it does, it does work but I think it doesn’t work immediately, it takes time and then you know you reflect on it erm, you know, at some point you know down the, down the line

8.b Broadening Gaining a realistic perspective (8b1): of perspectives P33:…. I think just to make you content within yourself erm … the more your, know my limitations and … what I can and can’t do…instead of maybe trying to aim maybe too high… yeah

234 P11: I think… my insight as build up right from the beginning, because I researched it so much, [ ..] when told it was bipolar, I could then look at it in even more detail, and start to understand like why I as like feeling like I am, and how I could kind of manage, manage those different states as well, erm.. but then to have the help of [support group] that .. that was useful as that helped to me understand those those smaller thoughts at the beginning, like that obviously mindfulness helped with as well, erm so that that was useful from that respect as well

P16: I started er …going for going for cognitive behavioural therapy with er a psychologist at our health care, ..er and I only did maybe 5 or 6 sessions but er I think she had planned more but things turned quickly after speaking with her and er a lot of, a lot of the tendencies I was having towards thinking er things will never get better, when I when I saw it though the lense of the CBT er I could see where I was… er ... thinking poorly or or thinking er catastrophy when there was really no need to. So my work with her I think really helped turn things around [...] I would say I was pretty much back to er my previous stable self

P20: … I think I think it was more about … and I don’t really you know it it means that I don’t deny the fact that I’ve got a bipolar disorder but it doesn’t come first, at some point it used to come first. I remember …I remember speaking to a good friend of mine, who.. in XXX erm who had [LT physical health condition] and she had this [LT physical health condition] dog erm and she didn’t like taking it everywhere because she kind of said the first thing that everybody knows about her, cos people ask why she’s got the dog, its that shes got [LT physical health condition] and she didn’t want it come first, she didn’t want it to be the kind of headline of who she is ermm and it doesn’t and I don’t feel like I have to announce that its something that I’ve got, its not the most important thing about me erm … its not kind of the thing that defines me and so I think that’s that’s one thing it doesn’t come first

P8: I’m thinking of ways of (sighs), it just gives me tools to look at life, instead of looking from the same old perspective, and sometimes you know, well black and white you get in the newspapers and the, really negative stuff with some, reporting and news and everything, I mean this is just working on peoples you know extremes and its you know, you wanna be in the middle somewhere, always be in the middle and looking at all options and, or looking, being prepared to go into bad times but you know that theres always good times as well … and being balanced all the time and, yeah knowing that even when you’re in the good times, you know theres going to be something bad, that sounds really negative, but just being aware you know, its not going to last for ever, you know anything you’re in is not lasting forever

P33: I think.. yeah, I think its just the experience of being in hospital and seeing people that are, maybe a lot worse than myself… erm … just being around them and … erm … kind of viewing people… equally opposed to … like looking down on people I think that’s… a big attitude change for.. for me… at that point

P16: … one thing I really appreciated the first day I met with her and was talking through my experiences is that she validated a lot of what I was experiencing, … erm and when I would say you know I’m not a I’m not back to work and I don’t know if I’ll be back in September and.. and she let me know …. she was just letting me know the process doesn’t happen over night and you know take your time with it, so so her demeanor was was excellent I thought.

235 P8: …also do yoga at the gym and, but the teacher does mindfulness stuff as well there in his own time, and he does yoga needra which is like a sleeping er meditation type and that’s a really nice way of looking at emotions and the opposites to emotions, to level them out, theres a technique there to to, you think of an emotion and then you think of the opposite, or a feeling in your body this emotion gives you and then you think the opposite, and keep flickering flipping between the two, and it somehow gets you into a, you can live with both sides of it, its like I don’t know if you know, is it ad-y-ta, which is like you know its called one, its not two, it means its you’re being at one with everything that’s happening to you all the time , you’re not thinking in black and white, you’re not being binary as they call it now, I think binary is the new thingy or or you’re looking at both at the same time or inbetween and it’s a way of looking at things in a much more holistic, more gentle way shall we say

P20: I think I think erm … this idea… accepting that’s theres not this kind of miracle cure that will change me into what essentially would be a different person I think, I think learning to accept that there are certain aspects of of my character that erm mean that I’m somebody who thinks about things deeply and erm worries about certain things so I think I think learning to accept that was very important, erm … and … I think learning to accept I I found it really helpful to just think about it … as I said about … being slightly more sensitive, and we had a lot of conversations with the therapist about this, about being a a bit more sensitive than perhaps other people are and I thought that was really nice way of looking at it that erm … you know that certain, certain life events or certain things will effect me in a more extreme way and I think I have to accept that that is the case erm and then and then it’s a case of kind of, I think having that acceptance and that kind of realistic .. outlook

P8:… its made me look at things in a much more ..subtle way and maybe more kind of, you know, theres no, nothings black and white really, there’s always shades in the middle or ones a reflection of the other in some way, and, its made me look at life in a different way, yes it [mindfulness] has.

P34: I think a lot of this was learning from my peers that the … you know if there is a relapse that that’s part of the recovery you know that its not a perfectly straight forward road all the time … um … and you know I always used to think that one thing would happen and complete catastrophe… everything’s miserable, nothings ever gonna work out again and its just not like that now

Questioning own thoughts (8b2):

P4: I think sometimes that voice, the critical voice has been there for such a long time erm or it it sometimes almost works on autopilot erm but it is erm .. I think its about about kind of questioning… where that thoughts come from erm and then trying to kind of come up with ideas or or thoughts how that voice is wrong

P4:… like I say where as before erm a lot of my self talk would have been just completely negative erm … and I just try and turn turn that around a little bit… I probably do talk to myself a lot more than I should do …. I do try and challenge that negative voice erm or that critical voice

236 8.c Looking for P14: …all I want is to be in reality and call a spade a spade [laughs] I am the positives so happy to have my perception be what I think is pretty normal [laughs] and erm some people might not but erm to be able to live in reality and to face appreciating facts and and and and embrace the truth, you know erm and not to be like what I have in side stepping everything, I just love that, I love to meet things head on, and my life so grateful for that, yeah

P16: I recognised that, you know, its its quite possible that .. that would have been the option I would have had to follow if I if I didn’t recover, so I feel lucky that I did recover, I know others aren’t so lucky P4: I think erm another thing for me is erm kind of trying to… pick out the positives

P4: …but also … trying to look on the brightside and look look for the positives erm, one of my favourite quotes is by by erm Dr Seus (I:hm mm) and its don’t cry because its over, smile because it happened, (I:yeah, ok) erm so I’ve actually got that on a frame on the wall erm and sometimes when I’m feeling bad, I just look at that and think about it , kind of, like I say, erm … just always try to to look for the positives in a situation

P20: We spilt up and .. basically although that was all very very horrendous … I still managed to keep it together [laughs] and I don’t and erm although I felt down erm my parents were very supportive they took my on holiday straight after it had happened, I took some time off work, it was, erm and I still and I managed to keep it together and thing was that as I say that gave me, that gave me the sense that actually I am really strong, actually if I can cope, If I can cope [laughing] with all of that and come out the other side .. then I should stop worrying about falling apart, if if all that can happen and that was the most stressful thing that had ever happened then I’m not gonna get seriously ill again erm and so that gave me kind of strength… and I think I built on that strength

P11: …but like the big thing about it is is that I feel like … I’ve achieved more as a result of being diagnosed with bipolar, than I would have like otherwise, just because its like given access to a career path that I might not have thought of, and I, you know those those days when you’d just stay in bed and do nothing, like… I still like appreciate days when I can just get up and do stuff, like that that’s still like amazing to me, and like I don’t think other people like would have that [laugh] that experience, so its like just feeling , yeah like good, just good about things like live like normally, in a way

P9: …you know as I am now I’m I’m happy, erm I can enjoy you know, enjoy erm life you know living life, you know my family, my friends, erm my work erm, you know I get enjoyment and fulfill fulfillment from erm and.. yeah just I think you know when when you are erm unwell, a huge sort of a huge kind of noose around your neck really, and there are times when you think you know this is never gonna, never gonna end, but it it does, and and now I think I’m you know, feeling the benefits from that, and I think with bipolar, one thing I’ve kind of erm … understood I think with it is that, ok you have the you know the bad times, you know when you are unwell and er and it can you know it can be, it can go on for a long time, but when you do come out the otherside, erm it it makes you realise how you know how good you know life life can be and all these things around you are you know are are good.

237 P4:… things down erm to my my best friend now, and she always says it to me, we we became friends erm … we we worked together and we kind of knew each other enough to kind of stop and have a little chat, erm … but it was just after I’d erm attempted suicide and I’d decided that I was perfectly fine to go to work on the Monday morning, even though I’d been in hospital all weekend…erm and she was on reception at work erm and she kind of looked at me and said are you ok and I broke down and told her no, erm but ever since then we’ve been really close erm so its its things like that,

P4: …so if I hadn’t had been going through such a tough time, erm .. we wouldn’t , I mean, we’d still probably be in a position where we’d just have a chat if we just happened to meet each other in a corridor, erm so its its thing like that I always look for

P12: … it was a journey, a major turning point in my life erm … and what I often say is that you know, its [laughs] one of the best things that happen to me in a way, but it was a horrendous thing that happened to me, but it was the best because it go me to a place where I am happy. And where I really want to be. So I dunno whether that says anything but its its erm … its certainly been a journey, it er … well yeah self discovery all of that kind of, self awareness, self discovery, self confidence, …not in a big headed way but in in a, it has just really helped to consolidate things, yeah

9. Accepting who I am and how I feel

9.a Self Examining self to work out what’s important to me (9a1): acceptance P12:… its something I talk about happiness, you know the idea of happiness and its its getting that balance right, of you know, what happiness means to you

P29: … when I would do book keeping, I still had a little bit of book keeping that I was doing, I would start feeling really anxious, and then when I was moving into working in the area that I should, you know this was my purpose… I was supposed to be working with plants, when I started working in the area that was my purpose, my moods really started clearing up … that was like the most important thing, was … um following my purpose instead of something I really wasn’t supposed to be doing but I felt I should do because it made more money.

P12: … one [laugh] one thing that I’ve had over the years is to really think about myself, er and and what I wanted to happen and and all of this, change, in terms of the work that I’m doing has really fed into this feeling of stability and happiness and you know doing a job just that I absolutely love

P12: I think you know, all I can say is going back to what I have already said [laughs] and that was that was really erm, …[6 second pause] examining what I wanted to happen and what I wanted from life and not being held back by …others, other peoples erm ideas about what my life should be about, so it is a strengthening of … yourself, in terms of you know, owning you’re your thoughts and owning the fact that you make the decisions… I mean it might, you know, it it kind of didn’t seem like that much but it was a, it was a big thing to get to.

238 P29: Another thing I did in a journey was to look at my psychological foundation… of course this is all symbolic you know, this journey I did a journey and um … so I had like a rebar that I was, that was in my foundation.. in my mind but it was rusting… so that probably meant that I needed to like you know renew the rebar or something to strengthen my foundation … its all symbolic so .. um but I I you know so I must have been doing some work on my psychological foundation to make it stronger .. within those within that um sharmonic journeying

P29: I can’t believe I left this out, um I did er I did a lot to like to try and discover my authentic self,….. you know I I, so anyway I did this work where I went through all my old pictures and I put together a self discovery journal um in a scrapbook, and I put little pictures in there and I also did a lot of um collage making, and you know would find like pictures from magazines and stuff and put together collages, and that helped me to envision .. like what I wanted to do in my life, in different areas of my life, I did like 5 different collage collages and um … so that’s round the the, that’s the work of finding my authentic self, through the collages I was finding what I really love because you know you’re picking out photographs of things that really strike you, and so and then when you look at those.. you realise you know this is what I want to do in this area you know, I wanna, you know I had the different collages I’d do were in the areas for travelling, heath, and um social relationships and um … er the physical realm and you know so that was very important, that helped me define … find my authentic self

Embracing differences from others (9a2):

P8: I think I’ve got a very, creative way of looking at life, or everything, and that’s why I do the job I do, and I try to keep out the box all the time, and trying to be a bit, not wacky, I don’t think that’s the right word, but trying to be a bit you know, not not I suppose unconventional is a certain way of putting it, I wouldn’t say go around you know like a nutty professor (both laugh) but I’m a slightly, you know, a slightly you know different type, most people who know me think I’m a little bit er not not, just a bit odd shall we say, a bit strange, they’ll say oh you’re a bit strange at times, and I’ll think well that’s a compliment and say yeah that’s great thankyou and I just think yeah I don’t want to be like everybody else (chuckles)…but I think the children at times say ooh you’re a bit weird and I think that’s lovely and I love that when they say that, or you’re a bit different, and I say yes I am I I, as I said we’re all different actually

P4: I think maybe it is just getting that acceptance from from somebody else … as well as myself

P20: So I think you know the think is I I accept now that I will sometimes feel lower than is proportion to whats going on in my life erm.. and erm…and that its transient and it’ll be go and it does and you know and … and I just see myself as having … er er a particularly sensitive … chemical make up so so I’m more sensitive to… things such as erm… the amount of light I get depending… on the seasons…certain drugs that er you know alcohol, even sugar I I‘m all these things .. erm … or various different factors will make my mood fluctuate more than an average person’s mood would erm.. and the bad moods are transient and I think that’s I think that’s kind of learning to not over analyse them … and I think I think I’ve I’ve learnt that

P20: …its not kind of the thing that defines me and so I think that’s that’s one thing it doesn’t come first but I also accept that toy know it is it is part, you know it is a part of who I am and so erm … and theres no point in kind of fighting against it

239 Accepting who I am (9a3):

P20: …its not kind of the thing that defines me and so I think that’s that’s one thing it doesn’t come first but I also accept that you know it is it is part, you know it is a part of who I am and so erm … and theres no point in kind of fighting against it

P16: …and then removing, I I would have had er a lot more self stigma than I would have had stigma imposed by others on me, and and er .. getting rid of that was a big, er blockage that I had to remove as well, so I didn’t I was er quite taken aback I think the .. with the diagnosis more than anyone else was, so .. er getting through, getting rid of that self stigma was a big stepping stone

P34: So the way that I describe myself now… is I’m a person living in recovery from a diagnosis of bipolar disorder… and er.. but in terms of… you know, and I really really hate when people say I’m bipolar, like that’s .. that’s like no cos you’re not, you’re so much more than that, like just stop saying that, you know, and people get really frustrated with .. you know word police but I’m like theres a reason why, you know people don’t go round saying I’m cancer… they just don’t so [laughs] people need to stop

9.b Being able P4:… so I think the whole kind of concept about just sitting with your to sit with a feelings..like I say understanding that its its how it is now but things will range of change, erm really helped me feelings P4: I mean the main technique that I learnt was just to erm, like I say, accept and sit with the feeling try not to, erm kind of concentrate on your breathing so that you’re not erm your minds not racing erm and erm like I say, sit with that feeling,

P4: One of the erm one of the things I found most difficult at the time but since have since found quite useful is just erm just accepting a feeling and not judging the feeling erm and kind of getting to understand that that feeling would pass

P8: …part of it is accepting, a bit, accepting that things aren’t always going to be good…I do go through bad phases and good phases, so theres a bit of acceptance

P8: …a bit of allowing things to be but at the same time not being it completely you know placid and you know being a real kinda, not doing anything about it, but I think accepting at times that you can feel quite low and just be with that for a while

P4: I think the most important is erm … accepting it (I:hm mm) erm and accepting kind of how I’m feeling

10. Looking after me

10.a Gaining Insight and awareness (10a1): more self insight, P11: I feel it came as part of insight as well, like cause that was just after awareness and the diagnosis and I’m like ok, I need to need to start helping myself here, understanding and … yeah so that that was quite important

P11: … I’ve touched on a lot haven’t I about like the insight that’s that’s a major thing

240 P11: … just try and have more insight, just look into it as much as you can, like read other peoples stories.. and erm yeah see if you can like relate to some of those

P20: … its then about finding … things that erm … I mean I can recognise if I’m feeling slightly low I can recognise if there’s a problem and its about finding ways to ways to cope with that and I suppose to I I think some of the things would probably work for everybody

P34: I think that’s something else that I’ve realised over time erm … there are some things that I care about and then there are other things that I just… don’t care about erm and if you, if one looked real carefully at my life it would be very clear what the things that I don’t care about are [laughs] erm … and you know some of them drive other people in my life up a wall erm … but … you know

Identifying early warning signs, triggers and maintenance factors (10a2):

P11: So previously I would become unwell and other people would notice, but now .. I might, you know, becoming a bit unwell with like internally and I’m able to recognise that myself, in my own like thought processes, and the way that they might change. its like very like subtle changes, in the early days and if I’m able to like rein that in and you know, control it in a way, it it never happens, so someone wouldn’t notice, whereas before it just escalated very fast.. because I wasn’t able to pick up on those minor changes, yeah

P11: …just, think, think about how you are and how what your triggers are, and how you can think in more detail about those, those like initial thoughts that are coming to you, and it will be hard for someone to understand that but… I think yeah, with some like, some booklets and stuff, I think it’ll probably, be easier to understand, yeah

P4: …before I used to keep everything bottled up, one because I didn’t want to admit things to myself

P12: … and the other thing was my sexuality, being gay and XX was always difficult, I had lots of turmoil inside me about that … erm and … basically I had come out prior to all of this happening, but not fully, […] so I had lots of issues with that and I I’m .. my guess is that that did contribute towards my breakdown.. basically I was closing a big part of me

P20: … there are times … there are times when I feel down, its very rare that I feel hypomanic or anything like that but what I would say is that its kind of .. I can contain it within a certain .. a certain kind of level of feelings so rather than rather than extreme highs and extreme lows… at ermm I can kind of keep that balance, I can recognise the signs and so maybe maybe the average might fluctuate like that [draws wiggly line on table with finger] and I fluctuate like that [draws more of a fluctuating line] but I don’t [draws extreme wiggle with hand and laughs] so its kind of about keeping it kind of in balance and if I start to feel bad kind of pull myself back and things like that and that’s.. that’s what its like and there will be times when I don’t think about it at all, there will be times when I notice that I am a bit vulnerable erm … and there are things that I can do to kind of… keep it in check

P33: … so we drew up a… a plan of which… I guess what what would trigger to to go high or low… all the key points er… it’s a big sheet that was… one list of highs one list of lows .. triggers… er useful contacts… and stuff like that… it was really good.. to have that to … to refer to

241 P11: … I suppose it shifted just from medication like initially, and then with the medication came the like education, and the ability to under understand even more than what I already knew, and then to build on that, and understand more about myself and the main triggers, yeah, and then that became quite fundamental to my recovery, yeah

P4: I think just isolating myself kind of staying away from other people made meant that I was just sitting with my thoughts, erm (I:yeah) and when I wasn’t able to erm kind of challenge them, and just erm accept that things were going to to change and that things would move on, erm … I think that became erm just very disruptive for me (I:hm mm) erm so kind of off the back of that I do make a conscious effort now to erm, to kind of, erm, make time to spend with my friends and my family,

P4: I think because of my low self esteem erm I would kind of beat myself up about feeling bad, erm … and again that, when you, it becomes a vicious circle, if if you’re not feeling very good and then you’re constantly criticising yourself about it it it just erm … it really just gets worse

Learning what helps manage my mood (10a3):

P4: …so it is a lot to do with erm knowing myself and knowing my moods and knowing what works

P1: I think we’ve covered covered the main things, I mean you know its everything in moderation, .. and erm exercise and being able to switch off and being able to .. you know, put put your life into little compartments so you decide which ones you’re going to to work on or or not work on

P1:… that that works very well so and ..erm.. ive had this bipolar thing recognised for ... getting on for 18 years now so its so its its another tried and tested system as well

P1: …it would be very much individual … erm .. you know, it could be to do with you know, whether or not their.. you know.. drinking energy drinks or not drinking energy drinks or or you know, drinking lots of tea and coffee, or not drinking lots of tea and coffee, or smoking or not smoking, or .. you know.. walking or not walking, or ... being solitary or being with others, you know it’ll vary….. I think the main things just finding out what works for you, it’ll be different from person to person

P1: …its always been my way of just.. you know, clearing my head, or cheering myself up or I just, so if you like its tried and tested, proven

P1: I know all these various ways that I’ve learnt to make myself well

P9: I think the the you know, with with depression sort of getting out getting out into fresh air, walking cycling just just you know getting out there is probably THE most important thing to stress, erm you know when you’re lying in bed and you know you can hear the rain coming down the last thing you, you feel you wanna do but it its it, for me it its definitely worked and I know exercise and fresh air erm is is a big you know a big part of my physical and mental well being. I would advocate you know doing that erm … and and obviously the the flip side, you know if if you’re having a manic episode, that’s the time you know to you know to stay in, stay inside really and and just er you know just calm you know try and stay calm and erm and not, not kind of do the regular things that you might do with the you know with the mania

P4: … like I say, because I’ve had different things in the past and I I’ve learnt what worked for me

242 10.b Routine, Defining boundaries (10b1): balance and boundaries P1: …its something that I’ve developed I think probably .. ermm.. no I I I think it is ..erm.. but then again at the same time… you know life has got more sort of complex.. with different potasses and compartments as I’ve I’ve gone along, but no I think it is probably something that I’ve I’ve developed since we’ve gone along to be able to put things into compartments and then say right .. we’re going to not do anything to this compartment for a while.. erm.. just going to work on these 3, or not put energy into these 2, or we’re going to work on these

P29:…well I I think it it er, oh for one thing it takes away anxiety, I mean if you don’t have good boundaries and people are getting in and hurting you all the time, you know that builds up a lot of fear, you know, I’m gonna be, I was hurt yesterday… I’m gonna get hurt again today blah blah blah, and when you have these boundaries you’re protecting yourself and that feels safer and that helps to take away anxiety … in and you know its happens slowly and gradually you begin to feel less and less fearful that somebodies gonna hurt you because you know that you have this boundary and I’m talking more about psychological boundary, or spiritual boundary kind of, um that you protect yourselves. but that that helps with the anxiety, it it you know..

P8: I don’t have early mornings which I’m not very good at early mornings and I I don’t work late into the evenings like I used to do, I used to work , you know 12 hour days, and in that maybe an hour and a half’s commute each end, its just ridiculous you think, well why am I doing this, I mean, its its stupid (laughs) and then working weekends on top of it, you know, because when you’ve got deadlines you can’t not hit hit a deadline and .. now I don’t have deadlines as such, I don’t have deadlines, I just have to do an hours teaching and you know let it all go at the end once I’ve finished the [work] I go home and let go of it

Creating and maintaining a balance in activities (10b2):

P1: …the importance of .. just general lifestyle stuff erm really, you know, this whole erm maxim about moderation of all things, it’s it’s a good one really, not over doing anything really, and if you are prone to bipolar overdoing things, whatever it is, whether its exercise or diet or you know drugs or cigarettes, or work, or whatever it is, .. its not a good idea .. so erm.. erm.. just just so generally self monitoring really

P16: …getting my life in order and balanced of course, I mean that’s the whole thing of bipolar is that you’re not balanced so er, I needed to like eat a balanced diet, and balanced play and work, not work too much not not play too much um and simplicity, you know I needed to work on, simple fine things in my life not making it so complicated … that it was going to make my life more stressful… the more stressful it is the worse that is on your brain

P29: There is one more thing, yes I um put up a sign on my desk and it was um on the this sign it said focus, order, balance and simplicity, which I called fobs, F O B S, so I could remember focus order balance and simplicity..

P4: I suppose its all about just kind of maintaining erm maintaining a balance really

243 P29: …and so I found, I was having difficulty in my life, actually this had been going on for a while, of like, on a given day I would have this huge to do list and you know it was just too much so I would be flitting about the house from here, there, oh I gotta do this, oh no no I’ve gotta to do, and I gotta.. so um so I told myself no, focus, you’ve gotta focus, you’ve gotta focus on one thing at a time, if I had a list of 30 things to do, I had to just focus on one item at a time, and not you know, and I I what I said to myself was like got to put on blinkers, when you have, when you’re horse back riding, or riding on a road with, on a horse they put these little things so they can’t see the side because they get spooked, by whats on the side, so its kind of, it helps the horse to focus on walking straight ahead, so so I needed to help to focus and then I needed to create more order… in my house because chaos would you know lead to like, I don’t know an unclear mind and er um you know, so I worked on ordering things, you know making my house more in order …

P33: … start kind of well new life again erm … I started, well before when I was in hospital I was doing a work pattern that didn’t suit my body clock so I was working in night clubs and then not going to bed until like 6 in the morning, sleeping when it was light sort of thing, … erm so I tried to reverse that and just stick to … a proper.. like working routine … erm … I’d say starting, starting playing football again was one of the main things … just to get into a proper pattern of erm going to training twice a week.. game on Saturday and .. trying to keep sort of active as well…

Having a routine to keep going (10b3):

P33: I’m still, been playing football since erm … obviously since I were younger but … back to football in 2007 I’ve not stopped so… so that was like, that’s been a key thing to… to have that hobby, the hobby and erm… have a sort of structured week and stay healthy

P4: I think it’s got a lot, in.. to do with routine really...yeah I think routine is something that definitely helps me and kind of just keeping track of things erm

P11:…so kind of like, making sure I get up everyday, have showered, like that routine is really important, at that time … erm, well I think yeah with both ends of the scale, so like with the hypomania and with depression, my routine will probably go completely so for example if I was hypomanic I wouldn’t be going to bed at the same time, id probably be out like drinking erm and maybe not even, I think not even like putting my make up on and stuff cause I thought I looked, looked really good, and then, with depression it would work the other way, where it was just kind of.. staying in bed so not getting up, not having a shower, not doing stuff, erm… so I feel like that routines quite important to like stick to, yeah and if I have like minor, you know minor feelings either way, I would make sure that structure was still there

P33: I think when I came out of hospital I was maybe 2 stone overweight, which I never really was before … it was good to er kind of socialize with, sort of build up friendships again, maybe make new ones as well .. erm .. to be in that sort of cycle when you are you’re actually motivated to go out and do something because its planned already, its already structured into your week what you’re doing…

244 10.c Setting P1: I just think just focus on the little things, even if they are little things, achievable little tiny things ..that you can do .. or you can say to yourself, or others can goals say to you.. that.. have even a slightest effect.. then .. then that’s a start..,….. and .. you know, the fact that a little thing can have an effect, or anything can have have a small effect, that’s really hopeful because you know, you can start building on that

P9: One thing that stands out is is having, you know, sort of target, target setting erm … and I think you know, that can be applied however well or unwell you are, if you like you know because obviously if if you’re un, you know you’re unwell your targets aren’t going to be nearly as high as they are as as they are when your well, and I think that was a a a … yeah an important thing for me to to realise, and and use really and I I do use it I suppose erm cos I think having targets and and reaching them, ticking them off, is a big part in recovery

P33:… just er getting into that work place again and erm… showing that I could er… showing I could work … erm… that was a good thing.. just being motivated to get up and go out and like er.. being there at a certain time…staying til a certain time… just good to get a sort of rhythm… … proving to myself that I could er get out of bed and … while still taking medication and … push myself to get out the house and … work…erm it proved to myself that I could do it... erm erm because it was only voluntary it was only certain parts of the week I would do it

P11: For me it felt like it was a very like gradual recovery, erm when I look back its been huge, but as I’ve experienced it along the way, its felt like very tiny steps, as I’ve built up to it,……… it just yeah, like the you know, taking those tiny steps forward and then looking back and realising like how far you’ve come, its been massive, but you know for example, if I had like minor like relapses in the future, I think you still are going up very slowly, like you’re always making that progress, yeah

P12: Then it was this examination of my life that had to happen, and and er even though I didn’t plunge into it, it took several years for me to get to this point .. still .. but er … erm it was definitely a step by step approach, and there was a recovery period, there were times where I might I might have had weekend where I felt a bit low again, and erm … when my partner and.. particular friends noticed that they would kind of work with me through it … so there was that kind of, that kind of thing happening on and off during er a few years after the breakdown

10.d P12: I think its just, the thing I can say is er learning how to put less Acknowledging pressure on myself … er and that is a learning erm, cos I I realised I was and minimising being quite erm … tough on myself as as… quite a lot of people that I work stress with are, erm… so … you know expect, expecting too much of yourself, its its letting go of some of that.. kind of …erm [5 second pause] yeah, expecting you know everything to be perfect, even though I’m not a perfectionist .. at all.. but demanding more of myself

P20: …one of the most beneficial things for me to keep my mood .. is the flexibility with the work that I do ermm … because … I work in in an environment where you can be pretty much, as long as you produce what you’re supposed to produce you can be pretty much left to your own devices, at least I’ve had bosses that have been like that erm … and so at the moment its fairly flexible as long as I can the work done and the work progresses I can work where I like and ermm…it means that if I’m feeling low … erm … I can just take.. can take a break… that’s the thing erm I didn’t have the pressure and I know that if I’m feeling low and I’m having a bad day …and I know get any work done there’s nobody breathing down my neck, there’s no problem with it.. I can make it up some other time

245 P16: ... one thing that that’s a huge influence that I I I should have mentioned earlier I suppose is just a, I gave myself permission and and really under doctors orders, er not to.. try to do everything I was doing prior to being hospitalized …

P29: getting my life in order and balanced of course, I mean that’s the whole thing of bipolar is that you’re not balanced so er, I needed to like eat a balanced diet, and balanced play and work, not work too much not not play too much um and simplicity, you know I needed to work on, simple fine things in my life not making it so complicated … that it was going to make my life more stressful… the more stressful it is the worse that is on your brain

10.e Doing Doing things to have a sense of purpose and fulfillment (10e1): things for me P14: I think as far as erm as you know recovery … erm … I … I don’t know, I think the only other .. thing I could add to it is that you need to have some kind of success in your life,.. you need to have some kind of purpose … you know

P34: I think the biggest thing… really is … finding something … erm that gives you a purpose or a goal… erm and that’s gonna be different for every person …

P9: I think again having having you know, having a you know a purpose outside of the family and everything else and … er a distraction as well erm… you know that was important, and obviously you know feeling worth, you know worthiness again really you know that you were working and earning a salary which was helping to pay the mortgage and the bills and everything, you know its quite you know quite an important … thing for me, maybe not everybody but for me that that was important, and it is still is, cos you know cos I think .. you know having work is erm … it you know it does give you a a sense of fulfillment and erm.. you know and a pur and a reasons to get up as well, a reason to get up in the morning, which is actually probably a very big thing when, you know when you’ve been down and depressed and getting up is really challenging, you know the fact that when the alarm goes off you know you’ve got to get up for work, it its good

Finding things that you love and enjoy (10e2):

P33: I think just erm find something you enjoy doing … it was.. that’d be one of my kind of top tips …

P12: I feel the best I I have done, in all my life, [laughs] and that is er I can put it to a change of career, and er doing what I absolutely love doing rather than erm previously when … er … I quite enjoyed what I was doing but it wasn’t really fully in line with … erm my values actually and and also .. erm everything I wanted for myself so … one of my values is helping others and I didn’t feel as if I was doing that in my previous jobs … even though I was, but not enough [laughs], so er … it is that realisation that has meant that with the career change that I .. kind of introduced aged 49, erm … I changed myself to what, the version I really always wanted to be, so that’s a very powerful thing [laughs] for me

246 P8: …you know you can start really seriously looking ahead and planning to do.. more, you know, do something you enjoy doing, maybe you can’t do a job you’ll always enjoy doing but try to find something, some hobby or, …something in your life you really love doing, you know, in in any form or anything, you know, if you can do that a bit everyday great, or once a week or once a month, you know whatever, as long as you’ve got something you’re really looking forward to, and something you really connect to I think and, it could be anything, I mean I I don’t don’t want to say what it is (I: no no of course, but finding something) but anything you really enjoy and look forward to maybe, anything, it can be simple things, to quite complex expensive things (laughs) I don’t know it depends on peoples means, but that’s one thing I would say

Getting out and connecting to nature (10e3):

P8: I lovesitting in nature, or out on the garden looking, just connecting to nature I find very relaxing as well, that’s another very therapeutic thing for me maybe I could add that, thats as one thing I haven’t added is that I’ve found nature and animals and (sigh) greenery and plants, I find very therapeutic to me

P9: I think, well the fresh air bit I have I think that’s almost a almost like a primitive sort of erm reaction in in a way you know that, erm I’ll just… just get out and and walk and exercise and that will will sort of help... the certainly with the anxiety and ... so erm … you know but I think as as I, as the years gone by and I’ve got older I’ve realised that that is more and more important and … but also you know my sort of day to day building work you know I’m out I’m outside most of the time in in the fresh air and you know its its physical ..work so, it’s a pay back in a way you know that that I I I’m working but its also helping my physical and mental wellbeing, at the same time

Having time out to relax (10e4):

P4: …but just kind of taking that time, erm and just kind of having the time to myself (I:hm mm) it kind of reduces my stress levels a little bit

P33: … when you’re in hospital you’re not motivated to do anything I think .. erm you’re sort of confined to your own maybe room or … the ward corridors and stuff, when I was out it was obviously a sense of freedom and … a sense of being able to do what you want in a kind of balanced way as well

Prioritising their own needs (10e5):

P12: so it’s a kind of a standing on your own 2 feet type situation, erm the other thing that happened, erm … so there’s that element, really getting to know your mind as to what you want to happen, so that’s a very important aspect

247 P11: erm, I feel yeah, I feel like I’m a bit more selfish, I think before I would probably wanna like please everyone, and like do, you know do what they wanna do, but if someones like do you wanna do this, I’m like no today I just wanna do, spend time like with my partner or spend time on my own, like I need, I need to do that actually, and I’m ok with saying that, whereas before I don’t think I was, yeah. Whether its like an age thing I don’t know, but it did feel like, yeah, I just wanted to like try and please everyone, whereas now, so its being a bit more selfish [laughs]…selfish doesn’t seem like the right word does it? but yeah [laughs] but you know, a bit more conscious of me, and like making sure I’m happy cos that’s that’s the main thing, that’s going to be the main thing

Looking after their own wellbeing through diet, exercise and sleep (10e6):

P1: I will go for a run, that’s what that’s… running is wonderful at both ends of the spectrum, running is the answer… when you’re down, obviously it gets you out, it you know, raises your endorphins and raises your heart rate, it just raises your mood. erm .. but actually if you’re sort of hyped up it lets you burn off steam

P12: I’m just trying to think about, erm … you know, things like sports or… hobbies and things like that, but but that’s erm …[4 second pause] nothing, theres nothing unusual there, you know I I suppose I concentrated on doing more … physically erm or tried to, erm …[4 second pause] so its you know, nothing unusual, its all the usual stuff of… you know, looking after yourself er your general health more maybe

P33: …being active is… I feel is a major part in staying well … I think I think its just erm … a sense… just when you exercise it feels really good to … erm…. maybe blow off some steam from the day or … erm… just release energy that I’ve I’ve got like a… I’ve always kind of hard like a… an abundance of energy .. so its good to get get rid of some of that

P20: I think sleep is really important that’s another thing, you know if I I kind of have to have 8 hours a night ermm if I if I loose sleep and I don’t have sleep I my mood because becomes erm more volatile … erm and so I think that’s another thing that’s really important …

P20: … that it is its really protective I think, you know doing the exercise erm I always used, because I had friends who used to exercise I always used to kind of be skeptical about the fact that it could really elevate it could really help with your mood and be enjoyable and you’d kind of crave it, I thought no I would never do that [laughs] but it it it has it did it did really help erm and helped to keep me kind of calm, sleep better

P33: definitely to get a proper balance between erm.. er sleeping well and having proper structured times erm when I have like something to eat and … erm .. just to refuel again… kind of keep myself going properly as opposed to eating stupid times and not getting to sleep at proper times and things like that

P29: I don’t really er… only as needed you know, if I have a really stressful period of time and I start feeling like I’m getting anxious I then I take the EMPowerplus … otherwise I’m not, well I take fish oil that’s good for the brain um one, actually now its um now its actually the omega fatty acids and them, getting them from algae I was doing fish oil but I’m doing algae omega and um and then I take vitamin D because its also helpful especially when it’s the dark time of the year

248 P14: …trying to explain to people how you get well on EMPowerplus, you really can’t explain it … it the way I describe it is like you take, you know when you used to do photographs .. you put them in the developer and the developer starts to come up and you start to see an image and then you have to get it out at a certain point and put it in the fixer, and its like that… you know I can only describe taking the empowerplus as like … its like you’re coming into your own, you’re coming, you’re coming into who you you are but you’ve still got some little… odd things going on you know

P14: … and I’m eating the healthiest diet on the planet but you now the whole “you are what you eat” is actually more accurate if you say “you are what you absorb”… and everybody that’s mentally ill is not absorbing micronutrition … they need a powerful influx of micronutrients to go straight to their brain … and so that I I don’t know what else to say but … I’ve even been criticised by some people .. that have that are are kind of saying I’m pushing a product you know by talking about this in my book and my presentations and I say to them if I has done this with meditation, if I had done this .. with some other… thing .. like if I had maybe done it through running marathons I would tell you that, im just telling you about the empowerplus because that’s how I did this

P34: I know for me when … I was .. especially when I was taking the medications all the time it was because the folks who I saw … doing well who weren’t on medication.. were doing all the other stuff … right… um so they were sleep, you know getting enough sleep … eating right, exercising and all that um…

10.f Present P8: …be present with what you’re doing, I find that.. quite often, you see moment the ballpart of meditation people got their minds all over the place, you’re focused not focusing on what you’re doing, and I actually now really consciously sit down if I’m doing something and if I’m gonna to have breakfast I don’t put the TV on, I think oh lets sit here eating my breakfast watching the TV… I’m just going to do my breakfast, enjoy the breakfast, focus on what you’re eating and have a nice coffee, then I can watch the TV if I want to

P8: I find that … if I could focus and be in the now and focus on things around me, all the senses or taste or what I’m doing, even what I’m thinking at this moment, just thinking of what I’m thinking, it it kind of calms me down and makes you much more alive in a way, that’s another little hint I can give is being totally.. present with myself, and that’s another little thing which is really mindfulness to be honest, and I’ve learnt that, and to really value, to be where you are at the moment and not, you know, be in the past or future all the time,

P8: I’m gonna rack my brains if there’s any other magic things I can tell you, but I just think, do the things you enjoy I and you know, do things you enjoy if you can, and er value your time, always value what you’re doing and be, be present with what you’re doing

P4: I find that that really helps, cause not only as I’m exercising but its almost, it becomes erm almost like a meditation because I just stop thinking about everything, I kind of listen to the sounds of birds, I concentrate on erm like my my footsteps or something like that

249 Other key examples

Recovery takes P12:… even though I didn’t plunge into it, it took several years for me to a long time get to this point .. still .. but er … erm it was definitely a step by step approach, and there was a recovery period, there were times where I might I might have had weekend where I felt a bit low again, and erm … when my partner and.. particular friends noticed that they would kind of work with me through it … so there was that kind of, that kind of thing happening on and off during er a few years after the breakdown

P34: …and then I just have to realise that it took me … a long time to come down this path .. and that that’s why when I saw this study I was really excited about it because I was just like.. these are the conversations we need to have and more people need to have them um and I’m glad that people are.. so..

P34: … whereas before it seemed like more there was one right way to do Recovery not something and if you did it that way you would get rewarded it and now we just down to realise theres lot of different ways to .. get forward … one thing P9: I don’t think there’s any really one thing XXX with it, I think it’s a combination of all all this erm stuff really, erm you know medication… yeah you know all all the factors that come together for you know for a recovery, that’s we’ve been talking about, no one specific thing, erm but I do, you know, and I do you know when when I’m speaking with people at the bipolar group, you’ve gotta you’ve gotta have some fight in you I think to, to you know get on that journey of recovery

P34: … you know I don’t wanna just say you know but then you know you sometimes hear people say and they’re totally true, its like not everybody can go run a marathon, not everybody needs to a run a marathon, you know and is that all of it? I don’t know, you know but I know for me when … I was .. especially when I was taking the medications all the time it was because the folks who I saw … doing well who weren’t on medication.. were doing all the other stuff … right… um so they were sleep, you know getting enough sleep … eating right, exercising and all that um…and is that the magic thing for everybody? no not necessarily ..

P33: I think just erm find something you enjoy doing … it was.. that’d be one of my kind of top tips … and erm … obviously the other ones kind a, being healthy, having enough sleep, take the medication … er the big things

P8: I think it’s a combination of both the drugs and the certain, you know, yoga, and erm processes which I’m kind of practicing

P34: I think people need to understand that and I think a lot of people, you know I also don’t think that my toolbox has to be the same as everybody elses .. cos its just not gonna be

P9: … I think with medication as well I think, you know, that doesn’t work on its own, erm and I suppose a.. there was a time when I though you know, and hoped that the medication would be the the the the be all, the be all and end all cure, but its you know its not… I think its, I dunno probably… a third or a half of the recovery if you know what I mean, I think you know the the you know, the self management side and … obviously psychotherapy when it when its needed is is as, is equally as important as the.. as the medication

250 P20: … think its it’s a whole, a real variety of things… that got to it, ….so I find I find that erm aside from the medication and the therapy actually having that kind of healthy lifestyle it astounded me how much difference it made to my mood and it really did keep everything on an even keel and its its I’m noticeably calmer when I do that

251 Appendix 22: Table showing identified categories and which participant accounts these were coded from

ID Main categories identified

Support Recognition Believing Instinctive Medication Psychological Becoming Changing Accepting Looking of the that things curiosity Therapy the director how I think who I am and after me problem can change of your own how I feel and not life giving up

1 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ 4 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ 8 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ 9 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ 11 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ 12 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ 14 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ 16 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ 20 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ 29 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ 33 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ 34 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓

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