Chrisma Pretorius

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.

Sense of coherence amongst male caregivers in dementia: A South African perspective

The aim of this study was to explore the experiences of men caring for spouses suffering from dementia from a salutogenic perspective. The study focused on the experiences of ten men caring for a spouse with dementia. Primarily qualitative analysing methods were utilized. Data were obtained from semi-structured interviews conducted with male spouses of patients with dementia. An orientational analysis approach was followed and the data was analysed in terms of Antonovskys sense of coherence construct. Qualitative findings were compared to participant responses to quantitative measures. Stressors most often reported were cognitive impairment, behaviour problems, a lack of free-time, erosion of the relationship, family conflict and financial concerns. Factors facilitating caregiver coping included support from their daughters, their ability to find meaning and satisfaction within the context of the care-giving task, and the successful utilization of active, problem-focused coping strategies. Men generally appear to be effective and capable caregivers. However, their approach to care giving differs from that of their female peers. Task-oriented problem-solving, effective use of the available support resources and the ability to find both meaning and satisfaction in their caring appear characteristic of effective male caregivers of demented spouses.

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

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.

Life after being diagnosed with psychogenic non-epileptic seizures (PNES): A South African perspective

PURPOSE The aim of the study was to explore the life experiences of South Africans who have been diagnosed as having PNES, with a focus on the aspects of the challenges which these individuals face, as well as the resources and coping strategies which are either made available to them or used by them in order to cope with PNES. METHODS Ten semi-structured interviews were analysed by means of thematic analysis in order to explore themes around challenges and resources for those diagnosed with PNES. RESULTS Various challenges were revealed by participants, as well as the resources used in order to deal with these challenges associated with being diagnosed with PNES. Some of the challenges included unexpected seizures, medical professionals, belief systems as well as family. However, resources to counteract these challenges were social support, medical professional as well as religion and spirituality. CONCLUSION Although many challenges are encountered by those who are diagnosed with PNES, there are substantial resources from which these individuals draw in order to live fulfilling and satisfactory lives. As more information and research is accumulated, more resources may become available to benefit these individuals and allow them to recover from PNES. It should be noted that medical professionals were described as both a challenge as well as a resource for people with PNES. Therefore, we can conclude that these individuals are key in the experiences of those who have been diagnosed with PNES, and that they play a role on not only a diagnostic level, but also in providing support, information, as well as therapeutic benefits.

People with Psychogenic non-epileptic seizures: A South African perspective

Background Psychogenic non-epileptic seizures (PNES) is a disabling disorder which has a negative effect on the quality of life of individuals with PNES. A clear understanding of the disorder is necessary, however, to date, research about PNES in South Africa is limited. Objectives The aims of this study were to explore the demographic variables of individuals with PNES in South Africa, to review the available body of research on PNES, and to compare it with our results. Method Twenty-two people with PNES, with confirmed video EEG, were recruited by means of convenience sampling from two hospitals. Descriptive statistics were used to describe the demographic variables of the participants. Results Internationally comparable results revealed misdiagnoses and low treatment delivery amongst a primarily female population. Conclusion This study provided greater insight into individuals with PNES in South Africa, highlighting the need for more information, support, effective treatment and accurate diagnosis of PNES.

The impact of an online Facebook support group for people with multiple sclerosis on non-active users

Background Multiple sclerosis (MS) is a debilitating disease and there is little research on support networks for people with MS (PwMS). More specifically, most studies on online support groups focus on those who actively participate in the group, whereas the majority of those who utilise online support groups do so in a passive way. Objectives This study therefore aimed to explore the experiences of non-active users of an online Facebook support group for PwMS. Emphasis was placed on the facilitators and the barriers that were associated with membership to this group. Method An exploratory qualitative research design was implemented, whereby thematic analysis was utilised to examine the ten semi-structured interviews that were conducted. Results Several facilitators were acquired through the online support group; namely emotional support (constant source of support, exposure to negative aspects of the disease), informational support (group as a source of knowledge, quality of information) and social companionship (place of belonging). Some barriers were also identified; namely emotional support (emotions lost online, response to messages, exposure to negative aspects of the disease), informational support (information posted on the group, misuse of group) and social companionship (non-active status) Conclusion These findings demonstrate that the non-active members of the online support group for PwMS have valid reasons for their non-active membership status. More important, the findings suggest that the online Facebook support group provided the group members with an important support network in the form of emotional support, informational support and social companionship, despite their non-active membership status or the barriers that have been identified.

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.

Initial experiences of family caregivers of survivors of a traumatic brain injury

Background There seems to be a paucity of research on the initial subjective experiences of family caregivers of survivors of a traumatic brain injury (TBI). Objective To explore the challenges that family caregivers face during the initial stages of recovery of a relative who has sustained a TBI. Methods Thematic analysis was used to explore the findings from semi-structured interviews that were conducted with 12 female family caregivers of relatives who had sustained a TBI. Results Family caregivers recalled their initial experiences of the shock at hearing the news about their relative’s TBI, negative experiences in hospital and frustrating interactions with healthcare professionals as particularly challenging. Conclusion The findings of this study emphasise caregivers’ need for support, information and psycho-education, especially from healthcare professionals, from the very beginning stages of recovery from a TBI. Practical and physical needs with regard to admission to and care in the hospital were also highlighted. This research will hopefully contribute to creating awareness amongst healthcare professionals on how they can contribute to improvement of the services provided by the healthcare system based on the experiences of the caregivers who participated in this study.

The caregiver experience: a South African perspective on caring for people with multiple sclerosis

This study explored the lived experiences of caregivers of people with multiple sclerosis (MS) with regard to their daily challenges, as well as the resources which help them to cope with their caregiving task. Participants were eight South African men (n = 3) and women (n = 5) [white = 6; coloured = 2] caring for a person with MS. They responded to a qualitative interview on their caregiving experiences. The data were thematically analysed. Findings suggest their daily challenges of managing symptoms, limited social interaction, financial difficulties, and the unpredictability of the future as a result of MS. Resources helpful to coping with caregiving roles include resilience, positive attitude, patience, religion, information, and financial security. Carer support should be tailor-made, because of the unique experiences of each caregiver and the varied presentation of MS.

Health related quality of life of people with non-epileptic seizures: The role of socio-demographic characteristics and stigma

Highlights • Participants reported high levels of perceived stigma.• A moderate significant inverse correlation was observed between HRQoL and stigma.• Stigma was associated with seizure worry, emotional wellbeing and social functioning HRQoL domains.• Participants in employment or education had significantly better HRQoL than those who were not.