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2.
Seizure ; 117: 142-149, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38417213

ABSTRACT

PURPOSE: Currently, we have limited knowledge of any potential differences among patients with functional seizures (FS), otherwise known as psychogenic non-epileptic seizures (PNES), from different socioeconomic backgrounds. Investigating medication use among these patients may provide insight into the quality and intensity of medical care they receive. Thus, we aimed to assess and compare the frequency and quantity of antiseizure medications (ASMs), and psychiatric and other medications used among patients with FS from a private and public epilepsy monitoring units (EMUs) in Cape Town, South Africa. METHODS: Only video-electroencephalographically (video-EEG) confirmed patients with FS with no comorbid epilepsy were eligible for the study. For this retrospective case-control study we collected data on patients' medication-taking histories using digital patient records, starting with the earliest available digital patient record for each hospital. RESULTS: A total of 305 patients from a private hospital and 67 patients from a public hospital were included in the study (N = 372). Patients with FS attending the public hospital had lower odds of taking any ASMs at presentation (aOR=0.39, 95% CI [0.20, 0.75]) and ever taking psychiatric medications (aOR=0.41, 95% CI [0.22, 0.78]) compared to FS patients from the private hospital. They did, however, have higher odds of being discharged with an ASM (aOR=6.60, 95% CI [3.27, 13.35]) and ever taking cardiovascular medication (aOR=2.69, 95% CI [1.22, 5.90]) when compared to the private hospital patients. With every additional presenting ASM (aOR=0.63, 95% CI [0.45, 0.89]) and psychiatric medication (aOR=0.58, 95% CI [0.40, 0.84]) the odds of being from the public hospital decreased. However, they increased with every additional discharge ASM (aOR=3.63, 95% CI [2.30, 5.72]) and cardiovascular medication (aOR=1.26, 95% CI [1.02, 1.55]). CONCLUSION: Standard approaches to pharmacological treatment for patients with FS differed between the public and private hospitals and may indicate a gap in quality of care.


Subject(s)
Anticonvulsants , Hospitals, Private , Hospitals, Public , Seizures , Humans , Male , Female , Hospitals, Private/statistics & numerical data , Hospitals, Public/statistics & numerical data , Adult , Retrospective Studies , Anticonvulsants/therapeutic use , Seizures/drug therapy , Seizures/epidemiology , South Africa/epidemiology , Case-Control Studies , Young Adult , Middle Aged , Electroencephalography , Adolescent
3.
Dementia (London) ; 23(4): 622-642, 2024 May.
Article in English | MEDLINE | ID: mdl-38354041

ABSTRACT

This qualitative study aimed to provide family caregivers with an independent platform to reflect on and identify their needs in the role of dementia caregiver. Thirty caregivers were interviewed using a semi-structured approach, and data analysis followed a reflective thematic analysis method. The study revealed that Black African caregivers in townships require sufficient information and orientation to dementia-specific services, psychoeducation on dementia as a disease and its behavioural manifestations, as well as practical skills to manage the disease process. Caregivers expressed the need for in-depth, accessible education to boost their confidence and resilience in handling the challenges of dementia caregiving. They also proposed community initiatives to raise awareness, promote knowledge, and facilitate early detection and diagnosis of dementia. Additional needs included informational and educational workshops, resources like transportation services and helplines, day care facilities, media campaigns, and collaboration with the government for funding and policy change. New caregivers were advised to seek comprehensive education, support, and services while preserving the dignity of their family members with dementia. Remarkably, the identified needs and community initiatives aligned with the priority areas outlined by ADI for a National Dementia Plan, which South Africa currently lacks. The study highlights the importance of developing a National Dementia Plan in South Africa through collaboration among stakeholders, including communities, policy-makers, and multidisciplinary healthcare teams, while ensuring that individuals and families affected by dementia have a voice.


Subject(s)
Caregivers , Dementia , Qualitative Research , Humans , Caregivers/psychology , Caregivers/education , Dementia/nursing , South Africa , Female , Male , Middle Aged , Aged , Adult , Needs Assessment
4.
Seizure ; 112: 112-120, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37797429

ABSTRACT

PURPOSE: To date not much is known about the differences, if any, between patients with functional seizures (FS) from different socioeconomic backgrounds. We sought to compare the psychological stress and trauma profiles of patients with FS from a private and public hospital in Cape Town, South Africa. METHODS: Only video-electroencephalography-confirmed patients with FS were eligible for the study. In this retrospective case-control study we collected data on self-reported demographic and psychological stressor/trauma variables using digital patient records starting with the earliest available digital patient record for each hospital. RESULTS: A total of 321 patients from a private hospital and 68 patients from a public hospital were included in the study. Most factors showed no significant differences. However, public hospital patients had higher odds of being older (p = 0.002), almost nine times the odds of reporting physical violence by an intimate partner (aOR = 8.65, 95% CI [1.70, 44.08]), more than eight times the odds of reporting psychological stress in the form of death and/or sickness in the family (aOR = 8.56, 95% CI [1.81, 40.41]) and almost three times the odds for other general psychosocial stressors (aOR = 2.82, 95% CI [1.08, 7.42]) compared to those attending the private hospital. They also had half the odds of being female compared to the private hospital patients (aOR = 0.47, 95% CI [0.23, 0.95]) and 93% fewer odds of reporting coming from an abusive home (aOR = 0.07, 95% CI [0.01, 0.52]). CONCLUSION: History and psychological trauma and stressor profiles showed many similarities between the public and private hospital groups; however, some differences were noted and could benefit further exploration and consideration in therapeutic and diagnostic contexts.


Subject(s)
Hospitals, Private , Seizures , Humans , Female , Male , Prevalence , Retrospective Studies , Case-Control Studies , South Africa , Seizures/diagnosis
5.
Seizure ; 112: 121-127, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37820427

ABSTRACT

PURPOSE: This study aimed to explore healthcare providers' (HCPs) perspectives and experiences of stigma when working with people with Functional Seizures (FS). Particular focus was given to understanding HCPs' experience and knowledge of FS, discovering the attitudes held by HCPs towards working with FS as a mental health condition, and exploring HCPs' views of how their stigma manifests towards people with FS when in an occupational setting. METHODS: Semi-structured individual interviews were conducted with thirteen HCPs who specialised in the diagnosis and/or treatment and management of FS. A reflexive thematic analysis was utilised to analyse the semi-structured interviews for means of identifying themes within the data. RESULTS: Themes identified included those of contextual factors which indirectly influence stigma, inclusive of a lack of time and resources. HCPs additionally described having a general limited understanding of FS as a condition and becoming frustrated with their patients, which in turn fuelled a stigmatising culture. HCPs also pointed to the idea of diagnostic terms being inappropriate and adding to stigma. HCPs' personal stigma as well as institutionalised stigma were identified. The HCPs also reported on the negative attitudes and actions directed towards FS patients. Strategies to reduce stigma were also explored. CONCLUSION: There are various ways in which HCPs' stigma towards individuals with FS can occur, both directly and indirectly. HCPs play a key role in supporting their FS patients and alleviating the effects of stigma; thus, it is important to understand their perspectives and experiences through further research.


Subject(s)
Attitude of Health Personnel , Mental Disorders , Humans , Social Stigma , Health Personnel/psychology , Seizures/therapy , Qualitative Research
6.
J Cross Cult Gerontol ; 37(4): 355-374, 2022 Dec.
Article in English | MEDLINE | ID: mdl-36308594

ABSTRACT

The aim of this study was to understand how dementia caregivers in the township of Soweto, South Africa interpret their role in the context of caregiving through the personal constructs identified using the Self- Characterization technique. Thirty family caregivers were recruited via purposive sampling methods and completed a Self-Characterization Sketch during semi-structured interviews. Content analysis of construct pairs was thematically coded using the Classification System for Personal Constructs (CSPC) - a reliable method to analyse personal constructs that are generated by constructivist assessments. Findings revealed that caregivers' interpretations of themselves was characterized by moral, emotional and cognitive attributes. Specifically, a sense of mastery, self-efficacy, strength, selflessness and unconditional positive regard characterized the most meaningful constructs of care within caregiver narratives in response to their loved ones with dementia. These adaptive outcomes, despite the challenging, pervasive, complex nature of dementia and its manifestations, suggest psychological and emotional resilience, higher levels of adjustment and caregiver well-being. However, it is important to consider possible consequences such as physical fatigue and burnout despite adaptive outcomes. Therefore, it is recommended that approaches to psychoeducational initiatives, emotional and psychological interventions and awareness campaigns include teaching caregivers how to self-care encourage the importance of consistent exercise, rest, sleep, nutrition as well as reaching out for social support. Lastly, empowering caregivers to use their personal resources would prove valuable in support groups, and individual to facilitate self-awareness, sustained coping and mental health.


Subject(s)
Caregivers , Dementia , Humans , Caregivers/psychology , Dementia/psychology , South Africa , Adaptation, Psychological , Social Support
7.
Dementia (London) ; 21(7): 2264-2287, 2022 Oct.
Article in English | MEDLINE | ID: mdl-35968611

ABSTRACT

This study was undertaken to understand South African family caregivers' lived experiences of individuals living with dementia in a predominantly Black African township. A homogenous sample of thirty family caregivers was recruited using purposeful sampling methods and interviewed using a semi-structured approach. Reflective Thematic Analysis (RTA) yielded four broad themes: Understanding Dementia, Struggles and Sacrifice, Mental Health and Protective Factors. Findings reflect how dementia is understood by family caregivers and their community, the struggles and sacrifices that they endure, the impact of caregiving on caregiver mental health and the protective factors that enable caregivers to cope, despite their difficulties. Our findings lead to new insights regarding dementia caregiving amongst family caregivers in South Africa. First, there appears to be a shift in perception - away from a cultural/spiritual paradigm - and a lack of pressure to conform to community conceptualizations of dementia among individual caregivers. Second, dementia caregiving had a negative effect on caregiver mental health and elicited stress, anxiety and grief reactions. Third, caregivers did not feel emotionally supported and expressed not receiving any assistance with their daily practical tasks. Fourth, before receiving a diagnosis, family caregivers were viewed as the perpetrators of abuse and/or neglect against their family members with dementia, instead of individuals with dementia being stigmatized by the community due to their behavioural symptoms. Additionally, help-seeking was not hindered by fear or stigma, but was motivated by caregiver distress as dementia-related behaviours began to manifest and caregivers feared being perceived as perpetrators of abuse. Psychoeducational interventions should be tailored to targeted population groups that are in need of further training to address the lack of awareness in communities, insufficient knowledge of dementia amongst healthcare professionals and the practical, emotional and psychological difficulties that family caregivers endure to facilitate mental health care and resilience.


Subject(s)
Caregivers , Dementia , Adaptation, Psychological , Caregivers/psychology , Family/psychology , Humans , South Africa
8.
Dementia (London) ; 21(7): 2231-2247, 2022 Oct.
Article in English | MEDLINE | ID: mdl-35938670

ABSTRACT

Townships and rural areas endure difficult circumstances such as poverty, unemployment, low educational levels, unstable income sources, socioeconomic deprivation and the lack of transportation. Furthermore, psychosocial issues such as crime, violence and substance abuse are additional contextual factors prevalent within South African townships. There has been a paucity of research focussing on the impact of contextual and socioeconomic conditions on the dementia family caregiver experience. This qualitative study aimed to address this gap. Semi-structured interviews were conducted with 30 family caregivers via purposeful sampling methods. Data analysis using Reflexive Thematic Analysis (RTA) generated four broad themes, namely - (1). Poverty, (2). Crime, Violence and Substance Abuse, (3). Practical Challenges and (4). A Sense of Normalcy. The findings of this study depict the socioeconomic conditions of family caregivers living in Soweto and its impact on dementia caregiving. The majority of the family caregivers in this study were unemployed and identified the financial aspects of caregiving as a significant strain. Beyond financial aspects, practical challenges that some family caregivers reported included spatial constraints and insufficient material resources. Caregivers raised safety concerns due to the dangers that this socioeconomic context posed. However, there was an implied sense of normalcy and a reluctance to identify challenges that caregivers endured. Recommendations for further research and its implications for public health policies and important initiatives to advocate for dementia caregivers and their family members are outlined.


Subject(s)
Dementia , Substance-Related Disorders , Caregivers/psychology , Dementia/psychology , Family/psychology , Humans , Qualitative Research , South Africa
9.
Seizure ; 99: 131-152, 2022 Jul.
Article in English | MEDLINE | ID: mdl-35640468

ABSTRACT

OBJECTIVE: The purpose of this scoping review was to explore the extent, range and nature of knowledge on stigma in functional seizures (FS). METHODS: This scoping review was conducted in accordance with the Joanna Briggs Institute Manual for Evidence Synthesis (JBIMES) guidelines and the five-step framework by Arksey and O'Malley. We searched for data sources written in English using MEDLINE, Scopus, EBSCOhost, Ovid, PubMed, Science Direct, Web of Science, Wiley Online Library, Microsoft Academic, Google Scholar, as well as grey literature sources, with no date limitations up to September 2021. The extracted data were analysed using basic frequency counts and thematic synthesis. RESULTS: The systematic search yielded a set of 988 potentially relevant data sources, of which 70 met the inclusion criteria. The retrieved sources reflected data from 85 countries and 5949 study participants. The thematic synthesis highlighted the prevalence of FS stigma, as well as its potential origins, context and impact on patients and families. The majority of studies were conducted in healthcare settings with healthcare providers, with fewer data sources reporting on family, patient, and broader society perspectives relating to FS stigma. CONCLUSION: Our scoping review suggests that FS stigma is prevalent but remains understudied. We need more research with a specific focus on stigma in FS, and factors that contribute to FS stigma (e.g. culture and context, naming of the condition), as well as accessible interventions and guidelines addressing FS stigma through education and training. Supportive attitudes and knowledge appear to be protective factors against FS stigma.


Subject(s)
Seizures , Social Stigma , Delivery of Health Care , Health Personnel , Humans , Prevalence
10.
Epilepsy Behav ; 128: 108570, 2022 03.
Article in English | MEDLINE | ID: mdl-35093831

ABSTRACT

OBJECTIVE: To investigate the opinions and attitudes of neurologists on the counseling about sudden unexpected death in epilepsy (SUDEP) worldwide. METHODS: Practicing neurologists from around the world were invited to participate in an online survey. On February 18th, 2021, we emailed an invitation including a questionnaire (using Google-forms) to the lead neurologists from 50 countries. The survey anonymously collected the demographic data of the participants and answers to the questions about their opinions and attitudes toward counseling about SUDEP. RESULTS: In total, 1123 neurologists from 27 countries participated; 41.5% of the respondents reported they discuss the risk of SUDEP with patients and their care-givers only rarely. Specific subgroups of patients who should especially be told about this condition were considered to be those with poor antiseizure medication (ASM) adherence, frequent tonic-clonic seizures, or with drug-resistant epilepsy. The propensity to tell all patients with epilepsy (PWE) about SUDEP was higher among those with epilepsy fellowship. Having an epilepsy fellowship and working in an academic setting were factors associated with a comfortable discussion about SUDEP. There were significant differences between the world regions. CONCLUSION: Neurologists often do not discuss SUDEP with patients and their care-givers. While the results of this study may not be representative of practitioners in each country, it seems that there is a severe dissociation between the clinical significance of SUDEP and the amount of attention that is devoted to this matter in daily practice by many neurologists around the world.


Subject(s)
Sudden Unexpected Death in Epilepsy , Attitude , Counseling , Death, Sudden/epidemiology , Death, Sudden/etiology , Humans , Neurologists , Risk Factors , Surveys and Questionnaires
11.
Int J Soc Psychiatry ; 68(1): 82-89, 2022 Feb.
Article in English | MEDLINE | ID: mdl-33307927

ABSTRACT

BACKGROUND: South Africa is a low and middle income country facing many challenges in public mental health care and implementation of recovery. AIMS: To contribute to what barriers and facilitators to recovery might be for service users in South Africa, from the perspective of service users, carers and service providers from three psychiatric hospitals in the Western Cape province. METHOD: Interviews and focus groups were conducted with service users, carers and service providers. Interviews and focus groups were transcribed and analysed using atlas.ti software and reflexive thematic analysis, from the bottom up. RESULTS: The barriers, environment, family, public mental health services, stigma and service users' attitude or behaviour generated, were found to be the most salient. The facilitators to recovery generated were support, family or friends, service providers, structure and empowerment. The need for support was identified as an underlying component to all these themes. CONCLUSION: Barriers and facilitators to recovery seemed to have both intrapersonal and external sources that intersect at times. Recovery needs to be supported at an individual level, especially through an under-utilised resource such as peer support work, but in conjunction with the development of recovery-enabling environments in services and communities in South Africa.


Subject(s)
Mental Health Recovery , Mental Health Services , Focus Groups , Humans , Qualitative Research , Social Stigma , South Africa
12.
Epilepsia Open ; 6(3): 472-482, 2021 09.
Article in English | MEDLINE | ID: mdl-34288577

ABSTRACT

Video-encephalographic (vEEG) seizure recordings make essential contributions to the differentiation of epilepsy and psychogenic nonepileptic seizures (PNES). The yield of vEEG examinations can be increased through suggestive seizure manipulation (SSM) (ie, activation/provocation/cessation procedures), but its use has raised ethical concerns. In preparation for guidelines on the investigation of patients with PNES, the ILAE PNES Task Force carried out an international survey to investigate practices of and opinions about SSM. An online questionnaire was developed by the ILAE PNES Task Force. Questions were asked at clinical unit or individual respondent level. All ILAE chapters were encouraged to send questionnaires to their members. The survey was open from July 1, 2019, to August 31, 2019. A total of 487 clinicians from 411 units across 94 countries responded. Some form of SSM was used in 296/411 units (72.0%). Over 90% reported the use of verbal suggestion, over 80% the use of activation procedures also capable of eliciting epileptic activity (hyperventilation or photic stimulation). Only 26.3% of units used techniques specifically intended to provoke PNES (eg, saline injection). Fewer than 10% of units had established protocols for SSM, only 20% of units required written patient consent, in 12.2% of units patients received explicitly false information to provoke seizures. Clinicians using SSM tended to perceive no ethical problems, whereas those not using SSM were likely to have ethical concerns about these methods. We conclude that the use of invasive nocebo techniques intended to provoke PNES in diagnostic settings has declined, but SSM is commonly combined with activation procedures also capable of eliciting epileptic activity. While research suggests that openness about the use of PNES-specific nocebo techniques does not reduce diagnostic yield, very few units have suggestion protocols or seek patient consent. This could be addressed through establishing consensus guidance for the practice of SSM.


Subject(s)
Epilepsy , Psychogenic Nonepileptic Seizures , Electroencephalography/methods , Epilepsy/diagnosis , Epilepsy/psychology , Humans , Seizures/diagnosis , Surveys and Questionnaires
13.
Epilepsy Behav ; 117: 107903, 2021 04.
Article in English | MEDLINE | ID: mdl-33740497

ABSTRACT

The human, as a biological system, is an open system embedded within larger systems -including the family, culture, and socio-political environment. In this context, a patient with functional seizures (FS) is embedded in relationships, educational/professional institutions, culture, and society. Both connection to these broader systems and the quality of these connections, as well as the soundness of each system in and of itself, influence the health and well-being of patients in positive or negative ways. The social aspects of life are important determinants of health and quality of life across the lifespan. The current narrative review brings out several overarching themes in patients with FS. Sections on attachment, marriage, social networking, and stigma highlight the central roles of supportive and affirmative relationships across the lifespan. The section on education underscores the importance of keeping children and youth with FS connected within their school environments, as well as managing any barriers - learning difficulties, school response to FS events, stigma, etc.-that can diminish this connection. Finally, the sections on employment and driving highlight the value of being an active participant in one's society. In summary, FS impacts patients across most social aspects of life domains regardless of age - factors that are important when developing biopsychosocial formulations. This review concludes that the multidisciplinary management of FS requires careful assessment of social aspects of life in patients which can then be targeted for treatment, to improve their quality of life, facilitating recovery, and reducing the risk of relapse.


Subject(s)
Quality of Life , Seizures , Adolescent , Child , Humans , Schools
14.
Epilepsy Behav ; 117: 107835, 2021 04.
Article in English | MEDLINE | ID: mdl-33611098

ABSTRACT

PURPOSE: To investigate the opinions of physicians on the use of complementary and alternative medicine (CAM) in patients with epilepsy (PWE) worldwide. METHODS: Online survey addressed to neurologists and psychiatrists from different countries. RESULTS: Totally, 1112 physicians from 25 countries (different world region: Europe, North America, South America, Middle-East, Africa, Former Soviet Union Republics) participated; 804 (72.3%) believed that CAM might be helpful in PWE. The most commonly endorsed CAM included meditation (41%) and yoga (39%). Female sex, psychiatry specialization, and working in North and South America were associated with the belief that CAM is helpful in PWE. Two-hundred and forty five out of 1098 participants (22.3%) used/prescribed CAM to PWE; among them, 174 (71%) people perceived CAM to be less effective and 114 (46.5%) people found CAM to be safer than conventional antiseizure medications (ASMs). The most common reasons to prescribe CAM for PWE were: to satisfy the patient (49.9%), dissatisfaction with the efficacy (35.6%), and dissatisfaction with the adverse effects (31.2%) of conventional therapies. CONCLUSION: Although the evidence supporting the use of CAM for the treatment of epilepsy is extremely sparse, most physicians worldwide believe that it could be integrated with the use of conventional ASMs, at least in some patients. High-quality controlled trials are warranted to provide robust evidence on the usefulness of CAM options in PWE.


Subject(s)
Complementary Therapies , Epilepsy , Physicians , Africa , Epilepsy/therapy , Europe , Female , Humans , Middle East , North America , South America , Surveys and Questionnaires
15.
Dementia (London) ; 20(2): 633-652, 2021 Feb.
Article in English | MEDLINE | ID: mdl-32138542

ABSTRACT

The purpose of this study was to explore the needs of male caregivers of people with Alzheimer's disease, by ascertaining the availability and utilization of Alzheimer's disease-related resources in low-income communities in the Western Cape. Semi-structured interviews were conducted with 11 adult males who were familial caregivers of persons with Alzheimer's disease. They were recruited via purposeful sampling methods. Thematic analysis of the data generated four major themes, namely Awareness, Knowledge and Education; Caregivers who do not use services; Caregivers who use services and Service needs identified by male caregivers. Predominant findings were that male caregivers in lower income communities do not make use of formal Alzheimer's disease-related services - albeit being aware of them - because they do not perceive a need for its utilization. Instead, male caregivers prefer assistance in the form of respite care in the home environment to relieve and assist them with household needs. The role of culture may have a substantial influence on these patterns of help-seeking behavior due to the emphasis on a collective approach to caregiving using wider, informal social networks. Needs that were identified by the male caregivers in this study included the general awareness of Alzheimer's disease, access to information regarding service provision, psychoeducation and affordable services within improved care facilities for low-income communities. The findings of this study suggest a starting point for the needs that should be prioritized to facilitate culturally appropriate service use amongst male caregivers in similar settings.


Subject(s)
Alzheimer Disease , Dementia , Adult , Caregivers , Humans , Male , Respite Care , Social Support , Surveys and Questionnaires
16.
Psychiatr Rehabil J ; 44(2): 157-165, 2021 Jun.
Article in English | MEDLINE | ID: mdl-33151709

ABSTRACT

OBJECTIVE: Understandings of recovery in low- and middle-income countries, such as South Africa, are still emerging. This study explored recovery understandings by service users, carers, and service providers in South Africa. METHOD: Thirty-seven in-depth, semistructured interviews and three focus groups with service users, carers, and service providers from three public tertiary psychiatric hospitals in the Western Cape province of South Africa were conducted in 2018 and 2019. Data were transcribed and analyzed, using atlas.ti and reflexive thematic analysis, to generate themes. RESULTS: Seven themes, with further subthemes, were generated: (a) relationship with others, (b) moving positively forward, (c) relationship with self, (d) relating to the world, (e) (re-)gaining of strengths, (f) awareness of difficulties, and (g) clinical understanding to support personal recovery. From the themes, a definition of recovery for the South African context was developed. CONCLUSION AND IMPLICATIONS FOR PRACTICE: The identified themes were not mutually exclusive-overlap is inevitable when describing personal recovery. These results and definition are informing the second phase of the overall study-developing a measure of personal mental health recovery for the South African context. The results can contribute to the wider clinical, academic and governmental comprehension of recovery, assist in the obtaining or retaining of funding for local recovery initiatives, and hopefully be useful for service users to understand their own process of recovery better and to be able to move along in that process. We recommend replicating the study and investigating recovery-conducive environments in South Africa with service users. (PsycInfo Database Record (c) 2021 APA, all rights reserved).


Subject(s)
Caregivers , Mental Health Recovery , Focus Groups , Humans , Perception , South Africa
17.
Epilepsia Open ; 5(3): 371-385, 2020 Sep.
Article in English | MEDLINE | ID: mdl-32913946

ABSTRACT

OBJECTIVES: This International League Against Epilepsy (ILAE) Report: (a) summarizes the literature about "driving and psychogenic nonepileptic seizures (PNES)"; (b) presents the views of international experts; and (c) proposes an approach to assessing the ability of persons with PNES (PwPNES) to drive. METHODS: Phase 1: Systematic literature review. Phase 2: Collection of international expert opinion using SurveyMonkey®. Experts included the members of the ILAE PNES Task Force and individuals with relevant publications since 2000. Phase 3: Joint analysis of the findings and refinement of conclusions by all participants using email. As an ILAE Report, the resulting text was reviewed by the Psychiatry Commission, the ILAE Task Force on Driving Guidelines, and Executive Committee. RESULTS: Eight studies identified by the systematic review process failed to provide a firm evidence base for PNES-related driving regulations, but suggest that most health professionals think restrictions are appropriate. Twenty-six experts responded to the survey. Most held the view that decisions about driving privileges should consider individual patient and PNES characteristics and take account of whether permits are sought for private or commercial driving. Most felt that those with active PNES should not be allowed to drive unless certain criteria were met and that PNES should be thought of as "active" if the last psychogenic seizure had occurred within 6 months. SIGNIFICANCE: Recommendations on whether PwPNES can drive should be made at the individual patient level. Until future research has determined the risk of accidents in PwPNES a proposed algorithm may guide decisions about driving advice.

19.
Epileptic Disord ; 21(6): 529-547, 2019 12 01.
Article in English | MEDLINE | ID: mdl-31843732

ABSTRACT

Psychogenic non-epileptic seizures (PNES), also known as dissociative seizures, are paroxysms of altered subjective experience, involuntary movements and reduced self-control that can resemble epileptic seizures, but have distinct clinical characteristics and a complex neuropsychiatric aetiology. They are common, accounting for over 10% of seizure emergencies and around 30% of cases in tertiary epilepsy units, but the diagnosis is often missed or delayed. The recently proposed "integrative cognitive model" accommodates current research on experiential, psychological and biological risk factors for the development of PNES, but in view of the considerable heterogeneity of presentations and medical context, it is not certain that a universal model can capture the full range of PNES manifestations. This narrative review addresses key learning objectives of the ILAE curriculum by describing the demographic profile, common risk factors (such as trauma or acute stress) and comorbid disorders (such as other dissociative and functional disorders, post-traumatic stress disorder, depressive and anxiety disorders, personality disorders, comorbid epilepsy, head injury, cognitive and sleep problems, migraine, pain, and asthma). The clinical implications of demographic and aetiological factors for diagnosis and treatment planning are addressed.


Subject(s)
Psychophysiologic Disorders , Seizures , Adult , Comorbidity , Female , Humans , Male , Psychophysiologic Disorders/diagnosis , Psychophysiologic Disorders/epidemiology , Psychophysiologic Disorders/etiology , Psychophysiologic Disorders/physiopathology , Risk Factors , Seizures/diagnosis , Seizures/epidemiology , Seizures/etiology , Seizures/physiopathology , Young Adult
20.
Epilepsy Behav ; 101(Pt A): 106399, 2019 12.
Article in English | MEDLINE | ID: mdl-31698264

ABSTRACT

The process of communicating a diagnosis of psychogenic nonepileptic seizures (PNES) has been widely studied internationally and found to be an important factor in the reduction of symptoms as well as promoting the uptake of treatment. To date, no research has focused on diagnosis communication in the South African context. This study used applied thematic analysis to explore the content addressed by a sample of 11 South African healthcare providers (HCPs) when presenting a diagnosis of PNES to a patient. The purpose was to investigate the areas of alignment between the international guidelines and what is done in practice and to identify other elements communicated by South African HCPs that were not addressed in the guidelines. The key communication elements described in five international guidelines were grouped into nine main themes, and coding frequencies were used to identify areas of alignment. In general, the practices of the participants aligned closely to the international guidelines. There was close alignment between the guidelines and the practices of HCPs in respect of six themes, namely: that the diagnosis was not epilepsy; how the diagnosis was made; that PNES was a real, debilitating condition; an explanation of possible causes and maintaining factors; that antiepileptic drugs are not effective in treating PNES; and a description of appropriate treatment. Participants suggested four additional subthemes that may be included when presenting a diagnosis: what to do in the event of future seizures; that further investigations are not helpful; enquiry into the link between stressors and seizures; and a discussion about comorbid conditions. Participants noted the value of utilizing a guideline as a means to ensure that all HCPs involved with a patient communicate a consistent message. They emphasized that diagnosis presentation must be relevant to the South African population and discussed the need to tailor explanations for the patient's home language and level of education. Cross-cultural barriers and different cultural health beliefs may require a specially tailored communication approach grounded in a clear cultural understanding.


Subject(s)
Communication , Health Personnel , Physician-Patient Relations , Psychophysiologic Disorders/diagnosis , Seizures/diagnosis , Adult , Electroencephalography/methods , Female , Humans , Male , Middle Aged , Psychophysiologic Disorders/psychology , Seizures/psychology , South Africa
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