Publications by authors named "Gregg H Rawlings"

13 Publications

  • Page 1 of 1

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

Seizure 2021 Oct 23;91:437-446. Epub 2021 Jul 23.

Academic Neurology Unit, University of Sheffield, UK. Electronic address:

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.
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http://dx.doi.org/10.1016/j.seizure.2021.07.021DOI Listing
October 2021

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

J Affect Disord 2020 04 30;266:341-348. Epub 2020 Jan 30.

Older People's Service, South West Yorkshire NHS Foundation Trust, UK.

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.
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http://dx.doi.org/10.1016/j.jad.2020.01.165DOI Listing
April 2020

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

Seizure 2019 Oct 21;71:8-12. Epub 2019 May 21.

Academic Neurology Unit, University of Sheffield, UK. Electronic address:

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.
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http://dx.doi.org/10.1016/j.seizure.2019.05.020DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814443PMC
October 2019

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

Epilepsy Behav 2019 05 6;94:169-177. Epub 2019 Apr 6.

Academic Neurology Unit, University of Sheffield, Royal Hallamshire Hospital, Glossop Road, Sheffield S10 2JF, UK.

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 (d = 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.
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http://dx.doi.org/10.1016/j.yebeh.2019.03.002DOI Listing
May 2019

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

Seizure 2018 Nov 28;62:59-65. Epub 2018 Sep 28.

Academic Neurology Unit, University of Sheffield, UK. Electronic address:

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.
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http://dx.doi.org/10.1016/j.seizure.2018.09.022DOI Listing
November 2018

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

Psychol Health 2018 09 29;33(9):1151-1171. Epub 2018 May 29.

a Academic Neurology Unit , University of Sheffield , Sheffield , UK.

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.
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http://dx.doi.org/10.1080/08870446.2018.1478974DOI Listing
September 2018

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

Epilepsia 2018 06 11;59(6):1109-1123. Epub 2018 May 11.

Academic Neurology Unit, University of Sheffield, Sheffield, UK.

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.
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http://dx.doi.org/10.1111/epi.14189DOI Listing
June 2018

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

Qual Health Res 2018 05 1;28(6):950-962. Epub 2018 Jan 1.

1 University of Sheffield, Sheffield, United Kingdom.

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.
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http://dx.doi.org/10.1177/1049732317748897DOI Listing
May 2018

Deconstructing stigma in psychogenic nonepileptic seizures: An exploratory study.

Epilepsy Behav 2017 09 19;74:167-172. Epub 2017 Jul 19.

Academic Neurology Unit, University of Sheffield, Sheffield, UK. Electronic address:

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.
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http://dx.doi.org/10.1016/j.yebeh.2017.06.014DOI Listing
September 2017

Written accounts of living with psychogenic nonepileptic seizures: A thematic analysis.

Seizure 2017 Aug 15;50:83-91. Epub 2017 Jun 15.

Academic Neurology Unit, University of Sheffield, UK. Electronic address:

Purpose: Qualitative studies examining lived experiences of psychogenic nonepileptic seizures (PNES) have predominantly relied on datasets collected using clinical or research interviews. This study pursued a different approach by investigating individuals' written accounts of their condition.

Methods: Participants (n=19) were recruited from membership-led organisations for individuals living with seizures and from a United Kingdom hospital. Participants were instructed 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 analysed using thematic analysis.

Results: Six main-themes emerged from the data. Theme 1: 'living with PNES' demonstrated that all participants presented the condition as having a debilitating effect. Theme 2: 'Emotions' revealed that individuals were struggling with anxiety, low mood and self-worth. Theme 3: 'Seizure symptoms' showed variability was a prominent feature in the description of ictal events. Theme 4: 'Treatment and outcomes' demonstrated that individual's perception of diagnosis and therapy differed greatly. Theme 5: 'Causation and development' revealed that the majority of participants spontaneously reported experiencing a traumatic event in the past. Theme 6: 'Lack of understanding' by themselves, the public and healthcare professionals appeared to pose considerable challenges to participants.

Conclusions: Qualitative research has an important role to play for improving our understanding of PNES. The findings contribute to the literature by highlighting the nature of stigma that people with PNES experience, and also their proneness to demonstrate problems with self-worth.
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http://dx.doi.org/10.1016/j.seizure.2017.06.006DOI Listing
August 2017

Written accounts of living with epilepsy: A thematic analysis.

Epilepsy Behav 2017 07 30;72:63-70. Epub 2017 May 30.

Academic Neurology Unit, University of Sheffield, UK. Electronic address:

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.
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http://dx.doi.org/10.1016/j.yebeh.2017.04.026DOI Listing
July 2017

Predictors of health-related quality of life in patients with epilepsy and psychogenic nonepileptic seizures.

Epilepsy Behav 2017 03 9;68:153-158. Epub 2017 Feb 9.

Academic Neurology Unit, University of Sheffield, UK. Electronic address:

Epilepsy and psychogenic nonepileptic seizures (PNES) are associated with reduced health-related quality of life (HRQoL). The present study investigated the profile, relationship, and predictive power of illness perceptions, psychological distress (depression and anxiety), seizure activity, and demographic factors on HRQoL in these patient groups. Patients with epilepsy (n=62) and PNES (n=45) were recruited from a United Kingdom hospital and from membership-led organizations for individuals living with seizures. Patients completed a series of self-report questionnaires assessing: anxiety (GAD-7), depression (NDDI-E), illness perceptions (B-IPQ), HRQoL (NEWQOL-6D), and seizure frequency and severity (LSSS-3). Correlational and hierarchical multiple regression analyses were conducted. Patients with epilepsy reported higher HRQoL and scored lower on measures of depression and anxiety. Patients with PNES perceived their condition as more threatening overall. In both conditions, HRQoL was negatively correlated with more severe illness perceptions and psychological distress. In epilepsy and PNES, psychological distress (epilepsy: 27%; PNES: 24.8%) and illness perceptions (epilepsy: 23.1%; PNES: 23.3%) accounted for the largest amount of variance in HRQoL. Clinical factors were found not to be significant predictors, while demographic factors predicted HRQoL in epilepsy (12.6%), but not in PNES. Our findings support the notion that psychological factors are a stronger predictor of HRQoL in epilepsy and PNES than condition-related and demographic variables. Prior research suggests that anxiety and depression are key predictors of HRQoL; this study demonstrates that the relationship between illness perceptions and HRQoL is similarly close. These findings highlight the importance of addressing patients' beliefs about their condition.
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http://dx.doi.org/10.1016/j.yebeh.2016.10.035DOI Listing
March 2017

What patients say about living with psychogenic nonepileptic seizures: A systematic synthesis of qualitative studies.

Seizure 2016 Oct 3;41:100-11. Epub 2016 Aug 3.

Academic Neurology Unit, University of Sheffield, UK. Electronic address:

Purpose: This is a narrative systematic synthesis of qualitative research investigating patients' accounts of living with psychogenic nonepileptic seizures (PNES). Qualitative methodologies allow patients to share lived experiences in their own words. The examination of patients' own accounts is likely to offer revealing insights into a poorly understood, heterogeneous disorder.

Methods: We identified 21 separate studies about PNES published after 1996 and based on analyses of patients' own words. Papers were synthesised inductively and deductively using an iterative approach.

Results: Five key themes emerged from the synthesis of studies capturing accounts from over 220 patients, reflecting experiences of seizure events, diagnosis, treatment and management, emotional events, and impact on daily life. Patients with PNES discussed the phenomenology of their seizures differently from those with epilepsy. PNES were experientially heterogeneous. Many patients shared a sense of uncertainty surrounding PNES, often resisting psychological explanations. Negative experiences with healthcare professionals were common. Patients seeking validation of their experiences often reported feeling ignored or doubted. Many reported past or current stressful events. Some demonstrated insight into their methods of emotional processing. PNES were described as a significant burden associated with financial and psychosocial losses.

Conclusions: Qualitative studies have produced helpful insights into patients' experiences of living with PNES, but many patient groups (men, young people, elderly, non-Western patients) are underrepresented in studies carried out to date. Research capturing these patient groups and using new methods of data collection and qualitative analysis could help to deepen our understanding of this disorder.
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http://dx.doi.org/10.1016/j.seizure.2016.07.014DOI Listing
October 2016
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