Summary
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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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
Highlights • Findings, analyses and samples of 21 qualitative studies into PNES are reviewed. • Five themes emerged: seizure, diagnosis, treatment, emotions, impact of daily life. • Methods to ...collect qualitative data rely on interviews or clinical consultations. • Qualitative analyses include linguistic-, thematic- and phenomenological analysis. • Future research is needed outside the developed world and of marginalised groups.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Abstract 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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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK, ZRSKP
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.
•There is a notable lack of understanding into stigma attached to PNES.•Individuals with epilepsy or PNES report perceived stigma.•Level of perceived stigma was higher in PNES compared with epilepsy.•The odds of perceived stigma was four times greater in PNES than in epilepsy.•In epilepsy but not PNES, stigma was related to depression and seizure frequency.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK, ZRSKP
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.
Accessible summary
People with an intellectual disability have been disproportionately affected by the COVID‐19 pandemic.
Long‐COVID is a condition in which people continue to experience symptoms after recovering from the COVID‐19 virus.
We have been unable to find any research on long‐COVID in people with an intellectual disability.
It is not clear what evidence is currently guiding treatments for long‐COVID in this population.
More research is needed to investigate the rate, symptoms, risk factors and treatments for long‐COVID in people with an intellectual disability.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, SIK, UILJ, UKNU, UL, UM, UPUK, VSZLJ
•While the term depression was familiar, it was not well understood.•Negative attitudes of depression seemed to result in the dismissal of symptoms.•Socio-cultural factors contributed to older adults ...managing depression in secret.•Older adults valued psychotherapy for the opportunity to share their difficulties.•Alternative research methods are needed to help provide additional insights.
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.
A systematic search of five databases was conducted. The methodology of articles was evaluated and findings synthesised.
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.
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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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
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.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
•Narratives reflect how individuals make sense of their illness.•Five different narrative typologies were told by those with a seizure disorder.•Those with epilepsy focused on the adversity that they ...have had to manage.•Individuals with PNES appeared to be in search of something appearing uncertain.•Accounts of illness differ between those with PNES and epilepsy.
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.
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.
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.
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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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
•People with an ID are an important subgroup of the PNES patient population.•A median rate of 9.4% of comorbid ID was found across eleven PNES cohorts.•Clinical differences in PNES were found between ...adults with and without ID.•There is heterogeneity in PNES, even within subgroups of the larger population.•There is limited evidence examining PNES in adults with ID.
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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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
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.
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.
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.
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.
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FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, UL, UM, UPUK
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