Counseling about sudden unexpected death in epilepsy (SUDEP): A global survey of neurologists' opinions.

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.

Up-Close and Personal: Conceptualizing the Self as Dementia Caregiver: a Study in Soweto, South Africa.

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.

Social aspects of life in patients with functional seizures: Closing the gap in the biopsychosocial formulation.

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.

Complementary and alternative medicine in epilepsy: A global survey of physicians' opinions.

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.

Psychogenic nonepileptic seizures: Comparing what South African healthcare providers communicate to patients at the point of diagnosis against international guidelines.

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.

Personality traits, illness behaviors, and psychiatric comorbidity in individuals with psychogenic nonepileptic seizures (PNES), epilepsy, and other nonepileptic seizures (oNES): Differentiating between the conditions.

OBJECTIVES: The study aimed to investigate if South African individuals with psychogenic nonepileptic seizures (PNES) differ from individuals with epileptic seizures (ES) and other nonepileptic seizures (oNES) in terms of demographic and seizure characteristics, personality traits, illness behaviors, and depression, anxiety, and posttraumatic stress disorder (PTSD) comorbidity in statistically significant ways; and if so, to test if these differences can be utilized in raising suspicion of PNES as the differential diagnosis to epilepsy and oNES in practice. METHODS: Data were analyzed from 29 adults with seizure complaints recruited using convenience sampling from a private and a government hospital with video-electroencephalography (vEEG) technology. A quantitative double-blind convenient sampling comparative design was used. A demographic and seizure questionnaire, the NEO Five Factor Inventory-3 (NEO-FFI-3), an abbreviated version of Illness Behavior Questionnaire (IBQ), and the Beck Anxiety Inventory - Primary Care (BAI-PC) were administered. Cronbach's alphas, analysis of variance (ANOVA), cross-tabulation, Fisher exact test, and receiver operating characteristic (ROC) analyses were performed on the dataset. RESULTS: The total sample consisted of 29 participants, of which 5 had PNES (17%), 21 ES (73%), and 3 oNES (10%). The final sample was comprised of 24 participants from the private hospital and 5 from the government hospital. The group with PNES was found to be significantly more male, to experience significantly more monthly seizures, and chronic pain when comparing the PNES with the ES group, and the PNES with the combined ES and oNES group in both private only sample, as well as the private and government hospital combined sample. Patients with PNES also had a higher level of education compared with the group with ES in the combined private and government hospital sample, something that was not evident in the private hospital only sample. No significant differences between groups were found in either sample in terms of age, population group, language, age at first seizure, and the NEO-FFI-3 subscales. All three groups scored above the cutoff point of 5 exhibiting depression, anxiety, and PTSD symptoms on the BAI-PC in both samples. However, the group with PNES tended to score significantly higher than the group with ES and the combined ES and oNES group in the private hospital sample. A cutoff point of 12 on the BAI-PC was found to predict PNES in this seizure population with 80% sensitivity and 89% specificity. However, once the analysis was repeated on the combined private and government hospital sample, significance in BAI-PC scores between groups was lost. All scales showed good reliability in our study, with the exception of the "Openness to Experience" subscale of the NEO-FFI-3 once reliability analysis was carried out on the combined private and government hospital group. CONCLUSIONS: This study provides an important stepping stone in the understanding of demographic and seizure factors, personality domains, abnormal illness behaviors, and psychiatric comorbidity in the South African population with PNES. The study also reported on a cutoff score of 12 on the BAI-PC predicting PNES with 80% sensitivity and 89% specificity in a private hospital sample.

Management of uncertainty in the diagnosis communication of psychogenic nonepileptic seizures in a South African context.

The process of communicating a diagnosis of psychogenic nonepileptic seizures (PNES) is an integral part of the treatment process. Many international studies have therefore focused on the PNES diagnosis communication process, but to date, none with a specific focus on the South African context. This current study considered the factors that influence the patient's experience of uncertainty and the strategies employed to manage that uncertainty within the provider-patient communication. This was considered from the healthcare provider's point of view, within the specific context of diagnosis communication. We conducted 13 semi-structured interviews with providers, eliciting their perceptions related to the communication of a PNES diagnosis to patients. Data were analyzed using thematic analysis, and themes were grouped according to the main tenets of the interpersonal health communication theory of uncertainty management, which included, the experience, appraisal, and management of uncertainty. The results revealed medical, personal, and social forms of uncertainty. The social sources of uncertainty, which include challenges related to the South African healthcare system, cultural, and language variability within the South African context, as well as possible stigmatization, seemed to have the biggest influence not only on the other areas of uncertainty, but was also indicated as a barrier to effective uncertainty management by providers. Providers in this study identified the importance of building the provider-patient relationship and ensuring patient understanding, as the main strategies used to reduce uncertainty. There was some evidence to suggest varied emotional appraisals of uncertainty by patients, but because of the subjective nature of this information, further research would be needed to confirm these findings. These findings suggest that as providers, one cannot apply a one-size-fits-all approach when aiding in uncertainty management. Furthermore, it is pertinent to remain cognizant of the social realities of the South African context and its impact on the patient's uncertainty experience. More research is needed to understand patients' perceptions of uncertainty management within the context of PNES diagnosis communication, and how they align with the perceptions of the providers provided here.

Access to diagnostic and therapeutic facilities for psychogenic nonepileptic seizures: An international survey by the ILAE PNES Task Force.

OBJECTIVE: Studies from a small number of countries suggest that patients with psychogenic nonepileptic seizures (PNES) have limited access to diagnostic and treatment services. The PNES Task Force of the International League Against Epilepsy (ILAE) carried out 2 surveys to explore the diagnosis and treatment of PNES around the world. METHODS: A short survey (8 questions) was sent to all 114 chapters of the ILAE. A longer survey (36 questions) was completed by healthcare professionals who see patients with seizures. Questions were separated into 5 sections: professional role, diagnostic methods, management, etiology, and access to health care. RESULTS: Responses were received from 63 different countries. The short survey was completed by 48 ILAE chapters, and the long survey by 1098 health professionals from 28 countries. PNES were recognized as a diagnostic and therapeutic problem in all countries. Trauma and mental health issues were most commonly recognized as etiologic factors. There was a clear relationship between income and access to diagnostic tests and expertise. Psychological therapy was most commonly considered the treatment of choice. Although financial difficulties were the most commonly reported problem with service access in low-income countries, in all countries stigma, lack of popular awareness, and lack of information posed challenges. SIGNIFICANCE: This global provider survey demonstrates that PNES are a health problem around the world. Health care for PNES could be improved with better education of healthcare professionals, the development of reliable and simple diagnostic procedures that do not rely on costly tests, and the provision of accessible information.

Diagnostic and treatment practices for psychogenic nonepileptic and epileptic seizures in Namibia.

PURPOSE: Information about existing healthcare resources for the management of seizures in developing countries is lacking. These countries are often poorly equipped to deal with the immense burden of costs, mortality, stigma, seizure-related disability, and comorbidities presented by seizure disorders. This study aimed to contribute to the goals of the International League Against Epilepsy (ILAE) by investigating the resources available for patients with seizure in Namibia. METHODS: Two separate surveys on the diagnostic and treatment practices for epileptic seizures (ES) and psychogenic nonepileptic seizures (PNES) were administered to private healthcare practitioners (HCPs) in Namibia. RESULTS: The findings are based on 50 responses from HCPs involved in the management of seizures. The responses indicate that HCPs have less confidence in their ability to manage PNES than ES. Psychological/psychiatric assessments are seldom utilized. Although HCPs engage in face-to-face communication of diagnoses, they seldom refer patients to additional sources of information. Healthcare practitioners follow up patients with ES more regularly than those with PNES. Healthcare practitioners indicated their willingness to collaborate and recognize the role of traditional health practitioners (THPs) in a supportive capacity when it comes to the management of seizures. Financial constraints, limited availability of specialized equipment, and lack of knowledge and awareness regarding seizure disorders among both HCPs and patients were mentioned as major obstacles in accessing healthcare services. CONCLUSION: The findings of this study add to the current literature by demonstrating some of the particular characteristics of HCPs from a lower middle-income African country regarding the diagnosis and treatment of PNES and ES.

Giving voice to the voiceless: Understanding the perceived needs of dementia family carers in Soweto, a South African township.

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.

Medical and psychiatric comorbidities, somatic and cognitive symptoms, injuries and medical procedure history in patients with functional seizures from a public and a private hospital.

PURPOSE: Patients with functional seizures (FS), otherwise known as psychogenic non-epileptic seizures (PNES), from different socioeconomic backgrounds may differ, however, this remains a gap in current literature. Comorbidities can play both a precipitating and a perpetuating role in FS and are important in the planning of individual treatment for this condition. With this study, we aimed to describe and compare the reported medical and psychiatric comorbidities, injuries, somatic and cognitive symptoms, and medical procedures among patients with FS from a private and a public epilepsy monitoring unit (EMU) in Cape Town, South Africa. METHODS: This is a retrospective case-control study. We collected data on the comorbidity and medical procedure histories, as well as symptoms and clinical signs reported by patients with video-electroencephalographically (video-EEG) confirmed FS without comorbid epilepsy. We used digital patient records starting with the earliest available digital record for each hospital until the year 2022. RESULTS: A total of 305 patients from a private hospital and 67 patients from a public hospital were included in the study (N = 372). Public hospital patients had higher odds of reporting intellectual disability (aOR=15.58, 95% CI [1.80, 134.95]), circulatory system disease (aOR=2.63, 95% CI [1.02, 6.78]) and gait disturbance (aOR=8.52, 95% CI [1.96, 37.08]) compared to patients with FS attending the private hospital. They did, however, have fewer odds of reporting a history of an infectious or parasitic disease (aOR=0.31, 95% CI [0.11, 0.87]), respiratory system disease (aOR=0.23, 95% CI [0.06, 0.82]), or medical procedures in the past (aOR=0.32, 95% CI [0.16, 0.63]). CONCLUSION: The study presents prevalence and comparative data on the medical profiles of patients with FS from different socioeconomic backgrounds which may inform future considerations in FS diagnosis and treatment.

Medication use in patients with functional seizures from a public and a private hospital.

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.

The coping styles and health-related quality of life of South African patients with psychogenic nonepileptic seizures.

OBJECTIVE: The primary aim of this study was to explore a possible association between the coping styles and the health-related quality of life (HRQOL) of patients with psychogenic nonepileptic seizures (PNES) in the South African context. METHODS: Twenty-two patients with PNESs with confirmatory video-EEG were matched by age and gender with a healthy control group. Participants had to complete self-reported measures of HRQOL and coping strategies. Data analysis consisted of performing Pearson correlations, analysis of variances, and regression analysis. RESULTS: The results indicated that the HRQOL scores of the group with PNESs were significantly lower than the HRQOL scores of the healthy control group. The participants with PNESs utilized significantly more escape-avoidance and distancing coping strategies in comparison to the healthy control group. The results also indicated that the avoidance coping strategies utilized by participants with PNESs had a significant negative effect on their HRQOL. CONCLUSIONS: The findings of this study provided greater insight into the coping strategies utilized by participants with PNESs, which have been identified as risk factors in PNESs. This is the first study of this nature of people with PNESs in South Africa.

Healthcare providers' perspectives on stigma when working with people with functional seizures.

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.

Prevalence and comparison of psychological trauma and stressors in functional seizure patients from a public and private hospital.

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.

Understanding the lived experiences of family caregivers of individuals with dementia in Soweto, a South African Township.

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.

Exploring the contextual factors that impact the dementia family caregiving experience in Soweto township, South Africa.

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.

From darkness to light: Barriers and facilitators to mental health recovery in the South African context.

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.

Stigma in functional seizures: A scoping review.

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.

Availability and utilization of support services for South African male caregivers of people with Alzheimer's disease in low-income communities.

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.