A meta-analytic evaluation of the effectiveness and durability of psychotherapy for adults presenting with functional dissociative seizures.

BACKGROUND: Psychological interventions are the most recommended treatment for functional/dissociative seizures (FDS); however, there is ongoing uncertainty about their effectiveness on seizure outcomes. METHODS: This systematic review and meta-analysis synthesises the available data. In February 2023, we completed a systematic search of four electronic databases. We described the range of seizure-related outcomes captured, used meta-analytic methods to analyse data collected during treatment and follow-up; and explored sources of heterogeneity between outcomes. RESULTS: Overall, 44 relevant studies were identified involving 1,300 patients. Most were categorised as being at high (39.5 %) or medium (41.9 %) risk of bias. Seizure frequency was examined in all but one study; seizure intensity, severity or bothersomeness in ten; and seizure duration and cluster in one study each. Meta-analyses could be performed on seizure freedom and seizure reduction. A pooled estimate for seizure freedom at the end of treatment was 40 %, while for follow-up it was 36 %. Pooled rates for ≥50 % improvement in seizure frequency were 66 % and 75 %. None of the included moderator variables for seizure freedom were significant. At the group level, seizure frequency improved during the treatment phase with a moderate pooled effect size (d = 0.53). FDS frequency reduced by a median of 6.5 seizures per month. There was also evidence of improvement of the other (non-frequency) seizure-related measures with psychological therapy, but data were insufficient for meta-analysis. CONCLUSIONS: The findings of this study complement a previous meta-analysis describing psychological treatment-associated improvements in non-seizure-related outcomes. Further research on the most appropriate FDS-severity measure is needed.

Exploratory and confirmatory factor analysis of emPHasis-10: The health-related quality-of-life measure in pulmonary hypertension.

The emPHasis-10 is a health-related quality of life (HRQoL) unidimensional measure developed specifically for adults with pulmonary hypertension. The tool has excellent psychometric properties and is well used in research and clinical settings. Its factor structure has not been examined, which may help to identity a complimentary approach to using the measure to examine patient functioning. We performed an exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) on a data set collected from 263 adults with PH recruited from a community setting. The EFA suggested the emPHasis-10 consists of three underlying latent variables, which based on the loading of items, were termed "fatigue" (Items 3, 4, and 5), "independence" (Items 7, 8, 9, and 10), and "breathlessness" (Items 1, 2, and 6). All factors were found to have good internal consistency. "Independence" accounted for most of the variance (29%), followed by "breathlessness" (22%) and "fatigue" (19%). The CFA looked to confirm the fit of a three-factor model. A higher-order model was found to be the best fit consisting of HRQoL as a superordinate factor, for which the association between this factor and the 10 items was mediated through the three latent factors. Further analyses were performed testing the validity of the latent variables revealing all were significantly correlated with self-reported measures of depression, anxiety, health-anxiety, and dyspnea. Our analyses support the emPHasis-10 as a measure of HRQoL, while also proposing the clinical utility of examining the three emergent factors, which could be used to glean additional insight into the respondent's functioning and inform care.

A systematic review of psychological interventions in adults with pulmonary hypertension: Is the evidence-base disproportionate to the problem?

INTRODUCTION: Our understanding of the psychological impact of living with pulmonary hypertension (PH) is growing, particularly for how anxiety and depression present in this group. There is evidence for the use of psychological interventions in other chronic lung conditions; however, trials focusing on adults with PH have yet to be subject to a systematic review. METHODS: We systematically searched four databases for evidence examining the effectiveness of psychological interventions for adults with PH. A narrative approach has been used to present findings. RESULTS: Overall, 186 unique articles were identified of which four were suitable. Data was gathered from 143 individuals. Cognitive behavioural therapy (CBT), metacognitive therapy (MCT) or counselling were investigated. All three studies reported a significant reduction in anxiety and depression, and some secondary outcomes were also associated with change. DISCUSSION: The evidence supporting the use of psychological therapies for adults with PH is promising, although limited. There is an urgent need for more research in this area to better understand how we can support this clinical group.

A meta-analytic review of the effectiveness of psychological treatment of functional/dissociative seizures on non-seizure outcomes in adults.

Psychological therapies are considered the treatment of choice for functional/dissociative seizures (FDSs). Although most previous studies have focused on seizure persistence or frequency, it has been argued that well-being or health-related quality of life outcomes may actually be more meaningful. This study contributes by summarizing and meta-analyzing non-seizure outcomes to quantify the effectiveness of psychological treatment in this patient group. A pre-registered systematic search identified treatment studies (e.g., cohort studies, controlled trials) in FDSs. Data from these studies were synthesized using multi-variate random-effects meta-analysis. Moderators of treatment effect were examined using treatment characteristics, sample characteristics, and risk of bias. A total of 171 non-seizure outcomes across 32 studies with a pooled sample size of N = 898 yielded a pooled effect-size of d = .51 (moderate effect size). The outcome domain assessed and the type of psychological treatment were significant moderators of reported outcomes. Greater rates of improvement were demonstrated for outcomes assessing general functioning. Behavioral treatments emerged as particularly effective interventions. Psychological interventions are associated with clinical improvements across a broad array of non-seizure outcomes, over and above seizure frequency, in adults with FDSs.

Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis.

Pulmonary hypertension (PH) can have a multifaced impact both on the affected individual and close family members. However there are relatively few studies that have sought to identify potential protective factors. Individual differences in ability to be self-compassionate are known to be implicated in adjustment in other long-term conditions and are now featuring in the provision of care for a number of conditions. This is a cross-sectional study that investigated the relationship between self-compassion, demographic, PH-related information, and measures of psychosocial functioning in adults with PH (n = 65) and caregivers (n = 29). Individuals with PH and caregivers of someone with PH completed self-report measures on demographic and clinical factors, anxiety, depression, self-compassion, and in those with PH, health-related quality of life, and in carers, caregiver burden. Data were analyzed using hierarchical regression analyses. Surprisingly, participants with PH and caregivers did not significantly differ on rates of depression (p = 0.19) or anxiety (p = 0.57) with both scoring relatively high. Components of self-compassion were associated with psychological functioning in both individuals and caregivers. Greater self-compassion was associated with fewer symptoms of anxiety and depression, and greater health-related quality of life in individuals with PH and lower burden in caregivers. More specifically, multiple regression analyses revealed after controlling for age, gender, and duration of PH, self-compassion was a significant predictor of anxiety and depression in people with PH, and of anxiety and caregiver burden in carers. These findings add to the evidence base indicating that there can be a range of burdens experienced by both people living with PH and their wider families. Further, this study uniquely suggests that psychological and supportive interventions that seek to build self-compassion may be useful to develop and test in this clinical group.

Cognitive and behavioral processes predict anxiety and depression in patients with pulmonary hypertension.

Emotional and psychological difficulties cannot fully be explained by disease-related factors in people with pulmonary hypertension (PH). This study examined the relationship between anxiety, depression, demographic, objective and subjective PH factors, and self-reported cognitive and behavioral processes, which have been associated with mood in clinical and nonclinical samples. This is a secondary analysis of baseline data from 77 adults with PH who took part in a randomized controlled trial of a self-help intervention targeting anxiety in PH. Participants completed self-report measures including: demographic (age, gender, ethnicity, education, employment) and clinical questionnaire (PH diagnosis, functional class, years since diagnosis), depression (PHQ-9), anxiety (GAD-7), health-related quality of life (emPHAsis-10), dyspnea (D12), and cognitive and behavioral processes (CBP-Q) scale. Data were analyzed using correlational and regression analyses. Overall, 70% and 63% of participants scored above the clinical cut off for anxiety and depression, respectively. Demographics were not associated with anxiety or depression. PH-related factors were correlated with depression but not anxiety. A multiple regression analysis suggested dyspnea and cognitive processes significantly predicted anxiety whereas behavioral processes were not a unique predictor. In contrast, dyspnea and behavioral processes predicted depression whereas cognitive processes did not. While a body of evidence exists demonstrating people with PH are more likely to experience anxiety and depression, less is known about factors that cause and maintain these disorders. Findings highlight the significance of subjective factors that could be a target for screening and psychological treatments for emotional difficulties, such as cognitive behavioral therapy.

Long-COVID in people with intellectual disabilities: A call for research of a neglected area.

Background: Long-COVID (also known as post-coronavirus-19 syndrome) is a term used to describe symptoms that people experience following their recovery from the COVID-19 virus. The severity of long-COVID is well recognised, with healthcare providers commissioning services to diagnose and treat those affected, as well as funded research into the condition. Methods: We performed a systematic search for relevant articles but were unable to find any research on long-COVID in people with intellectual disabilities. Due to the lack of data, we have only been able to make extrapolations from what is known about the condition within the general population. Findings: We provide an overview of long-COVID and its potential relevance to people with an intellectual disability. We have focused specifically on symptoms or signs, prevalence, risk factors and treatments of the condition in this group, highlighting areas for clinical practice and future research from a psychosocial perspective. We raise serious questions about our current understanding and the availability of the evidence-based to inform treatments tailored towards this population. Conclusion: This is the first report that we are aware of on the topic of long-COVID in people with an intellectual disability. The lack of research is preventing us from gaining a greater understanding of how the condition impacts people with an intellectual disability.

Examining the impact of pulmonary hypertension on nonprofessional caregivers: A mixed-methods systematic review.

Pulmonary hypertension (PH) is a heterogeneous condition, associated with a high symptom burden and high rates of disability. While nonprofessional caregivers are essential in helping patients live better, little is known about the impact on caregivers and support that is currently available. This review has synthesised evidence examining experiences of caregivers of adults with PH. Web of Science, PubMed, PsycINFO, and Cochrane Library were searched for all types of study design. Articles were evaluated and analysed using a Joanna Briggs Institute approach. Eight articles primarily focussed on pulmonary arterial hypertension and chronic thromboembolic PH were identified investigating 456 caregivers from at least 10 countries. Four categories were identified describing caregiver demographics, responsibilities, impact, and support. Four integrated themes emerged identifying possible unmet needs and therapeutic targets: (1) Change, reflecting the various demands caring had on people as they attempted to balance the needs of the patient and their own; (2) Preparedness, discussing how caregivers could feel uncertain and unskilled for their duties and unsupported; (3) Isolation, with caregivers often encountering challenges to gaining information on PH turning to PH organisations and others affected for support and connection; and (4) Physical and mental demands, reflecting the multifaceted impact of caring. Findings add to the evidence demonstrating that PH can have a considerable impact on patients' support network. Providing support for caregivers of people with PH is an unmet need and may have a positive impact on patients and is an area that requires further research.

Self-help cognitive behavioural therapy for anxiety in pulmonary hypertension: pilot randomised controlled trial.

Objective: People with pulmonary hypertension (PH) are at an increased risk of experiencing anxiety disorders. This study developed and tested the acceptability, feasibility and preliminary effectiveness of a cognitive behavioural self-help intervention for anxiety in adults with PH using a pilot randomised control trial design. Methods: Individuals with PH recruited from pulmonary hypertension associations were randomised to either receive a newly developed self-help intervention (n=37) or a wait-list condition (n=40). Acceptability was explored using mixed-methods questionnaires. A 2×3 repeated-measures analysis of variance was used to explore anxiety (GAD-7), depression (PHQ-9), health-related quality of life (emPHAsis-10), dyspnoea (D-12), self-mastery (Self-Mastery Scale) and mood-related cognitions and behaviours (CBP-Q) at baseline, post-intervention and 1-month follow up. A mediation analysis was performed to examine potential mechanisms of change. Results: Dropout was low at 15.6%. All participants would recommend the intervention to another person with PH and felt it had helped with their anxiety. Participants in the intervention group reported a reduction in anxiety, depression and cognitive and behavioural processes linked with mood disorders, compared to the control group. Change in unhelpful cognitions and behaviours mediated the relationship between intervention condition and change in anxiety and depression. Discussion: The intervention was found to be acceptable, feasible and safe. Anxiety at baseline was higher than previously observed, which could be associated with the additional burden caused by COVID-19 as the intervention was trialled during the pandemic. Findings add to the growing evidence supporting the use of psychological therapies, including cognitive behavioural therapy, in this clinical group.

What do we know about non-epileptic seizures in adults with intellectual disability: A narrative review.

Psychogenic non-epileptic seizures (PNES) superficially resemble epileptic seizures, but are not associated with abnormal electrical activity in the brain. PNES are a heterogeneous entity and while there is increasing interest in the characterisation of PNES sub-groups, little is known about individuals with PNES who have an intellectual disability (ID). ID is a lifelong condition characterised by significant limitations in cognitive, social and practical skills. ID (commonly with comorbid epilepsy) has been identified as a risk factor for developing PNES. However, people with ID are often excluded from research in PNES. This has unfortunately resulted in a lack of evidence to help inform practice and policy for this population. This narrative review synthesises the currently available evidence in terms of the epidemiology, demographic and clinical profile of adults with PNES and ID. There is a particular focus on demographics, aetiological factors, PNES characteristics, diagnosis and treatment of the condition in this population. Throughout this article, we critique the existing evidence, discuss implications for clinical practice and highlight the need for further research and enquiry. What emerges from the evidence is that, even within the sub-group of those with ID, PNES are a heterogeneous condition. Individuals with ID and PNES are likely to present with diverse and complex needs requiring multidisciplinary care. This review is aimed at the broad range of healthcare professionals who may encounter this group. We hope that it will stimulate further discussion and research initiatives.

Experiences of depression in older adults from non-white and ethnic minority groups: A thematic synthesis of qualitative studies.

OBJECTIVES: Older adults from black, Asian and minority ethnic communities, sometimes referred to as BAME, are at an increased risk of experiencing depression and yet are underrepresented in healthcare services. Qualitative research could help to provide insight into how the condition is experienced and managed by these groups. The current review is a thematic synthesis of qualitative studies examining lived experience of depression in older adults from BAME groups. METHODS: A systematic search of five databases was conducted. The methodology of articles was evaluated and findings synthesised. RESULTS: Twelve articles were identified capturing the experiences of 210 older adults across three continents: North America, South America and Asia. Studies met the majority or all of the quality appraisal criteria. Three themes emerged from the analysis: (i) How depression is understood in minority groups; demonstrating while older adults were familiar with the term depression, their understanding of the condition was limited; (ii) The socio-cultural norms of minority groups for managing depression; suggesting experiences of depression are typically kept hidden and managed in secret; (iii) How minority groups experience Western treatments for depression; reporting there are a number of barriers to seeking treatment, however, those who have received care valued the opportunity to share their difficulties. CONCLUSIONS: While there is growing interest in this area, the evidence-base and research methodologies utilised to capture and explore experiences remains limited. The findings of this review have implications for informing the diagnosis, management and treatment of depression in older adults from BAME communities.

Neurologists' experiences of participating in the CODES study-A multicentre randomised controlled trial comparing cognitive behavioural therapy vs standardised medical care for dissociative seizures.

PURPOSE: We investigated neurologists' experience of participating in the large CODES trial involving around 900 adults with dissociative seizures which subsequently evaluated the effectiveness of tailored cognitive behavioural therapy (CBT) plus standardised medical care versus standardised medical care alone in 368 patients with dissociative seizures. METHOD: We asked all neurologists referring patients with dissociative seizures to the CODES study to complete a 43-item online survey. This examined neurologists' (i) demographics, (ii) knowledge of dissociative seizures before and after their involvement in the CODES trial, (iii) clinical practice before, during and since their involvement, and (iv) their experience of the CODES trial. RESULTS: Forty-three (51%) neurologists completed the questionnaire. Only about half of neurologists could make referrals to psychological intervention specific for dissociative seizures before and after the trial. One-third of doctors reported having changed their referral practice following their involvement. The majority (>69%) agreed that patient satisfaction with different aspects of the trial was very high, and 83.7% thought that it was easy to recruit patients for the study. Over 90% agreed they would like the treatment pathway to continue. Respondents found different elements of the trial useful, in particular, the patient factsheet booklet (98%), diagnosis communication advice (93%) and the CBT package (93%). CONCLUSIONS: Neurologists participating in CODES generally found it easy to recruit patients and perceived patient satisfaction as very high. However, 46.5% of neurologists could not offer psychotherapy once the trial had finished, suggesting that problems with lack of access to psychological treatment for dissociative seizures persist.

Coping with stress: A pilot study of a self-help stress management intervention for patients with epileptic or psychogenic nonepileptic seizures.

PURPOSE: Many patients with epilepsy or psychogenic nonepileptic seizures (PNES) experience high levels of stress. Although psychological interventions have been developed for seizure disorders, few patients can currently access them. We aimed to assess the acceptability and feasibility of a self-help intervention targeting stress in patients with seizures, and to provide preliminary evidence for its effectiveness. METHOD: Patients were recruited from outpatient neurology clinics and randomized to an immediate intervention group (n = 39), who received the intervention at baseline, or a delayed intervention group (n = 43), who received the intervention one-month postbaseline. Participants completed self-report questionnaires measuring stress (Smith Stress Symptom Inventory [SSSI]), anxiety (Generalized Anxiety Disorder 7-item Scale [GAD-7]), depression (Neurological Disorders Depression Inventory for Epilepsy [NDDI-E]), quality of life (European Quality of Life - 5 Dimensions [EQ-5D]), and seizure severity and frequency (Liverpool Seizure Severity Scale [LSSS-3]) at baseline, and at one- and two-month follow-up. Participants also provided telephone feedback. The intervention consisted of a self-help stress management workbook based on an integrative stress model framework. RESULTS: Although the rate of participants failing to return follow-up information at two months was approximately 50%, those who completed the trial found the intervention acceptable; with the majority rating it as helpful (63.6%) and that they would recommend it to others with seizures (88.1%). A significant reduction in self-reported stress (P = .01) with a medium effect size (dz = 0.51) was observed one-month postintervention. There were no significant changes in any other measures. CONCLUSION: The intervention was perceived to be acceptable, safe, and helpful by participants. It could be a useful complementary treatment option for reducing stress experienced by patients living with seizure disorders. Further evaluation in a larger trial is warranted.

Narrative analysis of written accounts about living with epileptic or psychogenic nonepileptic seizures.

PURPOSE: This study is based on a narrative analysis of individuals' written accounts of living with epilepsy (n = 29) or psychogenic non-epileptic seizures (n = 20, PNES). Narrative analysis looks at both the content and structure of the personal account. We used a form of narrative analysis that allowed us to identify common story lines, otherwise known as narrative typologies, potentially characteristic of these patient groups. Different narrative typologies were described and compared between writers with the two conditions. METHODS: As part of a therapeutic writing intervention for individuals living with a seizure disorder, participants were asked to write for at least 20 min about their very deepest thoughts and feelings about their condition. RESULTS: Five narrative typologies emerged: 1. 'Losses from Illness' - stories were dominated by events individuals could no longer do, authors appeared more disabled reporting greater frequency of seizures and lower health-related quality of life. 2.'Feeling Lost' - participants appeared to be in search of something and expressed uncertainty. 3.'Tackling Adversity' - individuals strove to not let their condition stop them from living their life. 4.'Overcoming Challenges' - stories reflected that the condition must be battled and fought with. 5.'A Normal Life' - individuals had demonstrated that they are managing to live with their condition. CONCLUSIONS: While the 'Tackling Adversity' typology was preferentially used by writers with epilepsy, the 'Feeling Lost' typology was chosen more commonly by those with PNES. People with epilepsy narrate their disorder differently from those with PNES, suggesting that they have different life and illness experiences.

A pilot randomised controlled trial of a home-based writing intervention for individuals with seizures.

OBJECTIVE: We investigated the feasibility, acceptability and preliminary effectiveness of a writing intervention for individuals with epilepsy or psychogenic nonepileptic seizures. METHODS: Individuals were randomised to write about potentially 'therapeutic' topics (n = 43) or about their daily events (n = 25). Participants were asked to write on four separate occasions for at least 20 min. Repeated-measures analysis of variance was used to investigate change in measures of health-related quality of life (NEWQoL-6D), depression (NDDI-E), anxiety (GAD-7) and illness perception (B-IPQ) from baseline to one and three-month follow-ups. Qualitative and quantitative data taken from a Writing Task Questionnaire was analysed between the two conditions. RESULTS: Recruitment was acceptable with 52% of those randomised completing the full writing intervention. In both conditions, participants wrote for longer than 20 min suggesting those who completed the study engaged well with the procedure. Greater benefits were observed in the 'therapeutic' condition (p < 0.05), which was associated with an improvement in health-related quality of life at one-month follow-up (p = 0.02). No differences were found in the other measures. CONCLUSIONS: A writing intervention is acceptable in this population. Self-reported benefits were modest, suggesting therapeutic writing may be more suitable as a supplement to other therapies rather than a stand-alone therapeutic intervention.

Health care practitioners' perceptions of psychogenic nonepileptic seizures: A systematic review of qualitative and quantitative studies.

A recent systematic synthesis of qualitative research demonstrated that patients with psychogenic nonepileptic seizures (PNES) often experience unsatisfactory encounters with health care practitioners (HCPs). It is important to understand such interactions from the perspective of those responsible for delivering care. This systematic review aimed to examine the attitudes and perceptions of HCPs toward PNES. A systematic search of 3 databases (Web of Science, PubMed, and CINAHL) was conducted in November 2017. Studies from around the world published after 1997 using qualitative or quantitative methodologies were reviewed. An interpretative stance was taken to analyze the data utilizing a grounded theory approach. The quality of studies included was assessed using the Mixed Methods Appraisal Tool. Overall, 30 separate studies capturing the views of at least 3900 professionals were included. Five concepts emerged from the analysis: (1) HCPs' responses demonstrated uncertainty about many aspects of PNES, including diagnosis and treatment; (2) HCPs understood PNES in dualistic terms, perceiving the condition as largely associated with psychological factors; (3) Patients with PNES were considered challenging and frustrating; (4) HCPs held mixed or contested views about who is responsible for treating patients with PNES; and (5) PNES was viewed as less severe or disabling than epilepsy and associated with a greater degree of volition. Although some HCPs have an excellent understanding of PNES, the views of many give rise to concern. The number of qualitative studies that directly ask HCPs about their perceptions of PNES is limited. Moreover, some professional groups (ie, mental health specialists) are underrepresented in current research. This study reveals a demand for additional training. However, effort is needed also to change the attitudes of some practitioners toward PNES.

Written Accounts of Living With Epilepsy or Psychogenic Nonepileptic Seizures: A Thematic Comparison.

This study examines the subjective experience of living with epilepsy or psychogenic nonepileptic seizures (PNES) by thematically comparing individuals' written accounts of their condition. Five key differences emerged. Theme 1: "Seizure onset" revealed differences in how individuals think about and ruminate over the possible causes of their condition. Theme 2: "Emotive tone" demonstrated that writings of those with epilepsy reflected stable emotions (no intense emotional reactions), whereas those of writers with PNES reflected anxiety and low mood. Theme 3: "Seizure symptoms" showed differences in the conceptualization of seizures. Theme 4: "Treatment" explored differences in the diagnostic journey and experiences of health care professionals. Theme 5: "Daily life" revealed that those with epilepsy perceived sequelae and seizures as something that must be fought, whereas those with PNES tended to describe their seizures as a place they enter and something that has destroyed their lives. The findings have implications for treatment and management.

Deconstructing stigma in psychogenic nonepileptic seizures: An exploratory study.

Psychogenic nonepileptic seizures (PNES) are classified as a mental disorder, the manifestations of which superficially resemble epileptic seizures. There is a notable lack of in-depth qualitative or quantitative studies investigating the stigma attached to PNES. The current study is an exploratory analysis into the nature of perceived stigma in those with PNES when compared with individuals with epilepsy. Individuals with epilepsy (n=78) and PNES (n=47) were recruited from a United Kingdom hospital or membership-led organizations for individuals living with seizures. Participants were asked to complete a series of questionnaires investigating health-related quality-of-life components (NEWQOL-6D), anxiety (GAD-7), depression (NDDI-E), seizure frequency and severity (LSSS-3), and illness perception (B-IPQ). Perceived stigma was measured using one question taken from the NEWQOL-6D. Individuals with PNES reported a greater level of perceived stigma than those with epilepsy (p=0.04). Our results indicate that the risk of experiencing perceived stigma in PNES was 42% higher than the risk in epilepsy. In epilepsy, but not PNES, perceived stigma was significantly associated with seizure frequency, anxiety, depression, and many of the sequelae of the condition. In both conditions, self-control was associated with stigma (rho≥0.34, p≤0.01). This study was exploratory, and so definitive conclusions cannot be made; however, our findings suggest that the majority (87.2%) of individuals with PNES reported experiencing some degree of perceived stigma, the risk of which is greater than that in epilepsy. Further research is needed into the prevalence, nature, and consequences of stigma in PNES.

Written accounts of living with epilepsy: A thematic analysis.

This study examines the subjective experience of living with epilepsy by thematically analyzing participants' written accounts of their condition. Writing is seen as an individual act allowing for private exploration, reflection and expression of thoughts and feelings. Participants (n=20) were recruited from a United Kingdom hospital and from membership-led organizations for individuals living with seizures. Participants were asked to produce four pieces of writing: 1) about their thoughts and feelings about their condition; 2) a letter to their condition; 3) a letter to their younger self; and 4) about a personal value. All writings were analyzed thematically using a theory- and data-driven approach. Five main-themes and 22 sub-themes emerged from the data. Theme 1: 'seizure onset' demonstrated that the development of seizures and subsequent diagnosis was an important event that could change an individuals' identity. Theme 2: 'seizure symptoms' revealed participants externalized their seizures as an intrusive agent with a constant presence in their lives. Theme 3: 'treatment and outcome' reflected medication as an essential means to controlling seizures with subsequent side effects being perceived as a compromise. Theme 4: 'living with epilepsy' explored the consequences of the condition including restrictions and stigma. Theme 5: 'displays of coping' demonstrated that, for the most part, participants were keen to present themselves as living well with epilepsy. The results add to the growing research applying qualitative methodologies to investigate the phenomenology of epilepsy. Qualitative research can improve our understanding and awareness of the condition, as well as inform clinical practice.