The experience of active involvement in an online Facebook support group, as a form of support for individuals who are diagnosed with Multiple Sclerosis

CITATION: Pretorius, C. 2016. Die ervaring van aktiewe betrokkenheid by 'n aanlyn Facebook-ondersteuningsgroep as ʼn vorm van ondersteuning vir individue wat met Meervoudige Sklerose gediagnoseer is. Tydskrif vir Geesteswetenskappe, 56(3):809-828, doi:10.17159/2224-7912/2016/v56n3a6.The original publication is available at http://www.scielo.org.zaAFRIKAANS OPSOMMINGl: Hierdie studie benut 'n kwalitatiewe metodologie om 'n grootliks onverkende onderwerp, nie net in Suid-Afrika nie, maar wêreldwyd te ondersoek. Bestaande navorsing oor ondersteuningsnetwerke vir mense met meervoudige sklerose (MS) is beperk. Die doel van die studie was om die ervarings van aktiewe betrokkenheid by ʼn aanlyn Facebook-ondersteuningsgroep vir individue wat met MS gediagnoseer is, te ondersoek. Die studie fokus spesifiek op die hulpbronne, asook die uitdagings verbonde aan die aktiewe betrokkenheid by hierdie groep. Tematiese ontleding is gebruik om tien semi-gestruktureerde onderhoude met individue wat met MS gediagnoseer is en aktief by ʼn aanlyn Facebook-ondersteuningsgroep betrokke is, te ontleed. Verskeie temas het in die studie na vore gekom. Die temas sluit verskeie vorms van ondersteuning in, naamlik emosionele, instrumentele, inligtings- en waarderingsondersteuning sowel as sosiale kameraadskap. ʼn Aantal uitdagings is ook geïdentifiseer en sluit emosionele uitdagings, beperkte inligting, onderlinge vergelyking en ʼn behoefte aan persoonlike kontak in. Hierdie studie is die eerste van dié aard en voorsien dus ʼn platform om MS-lyers se ervarings van aanlyn ondersteuningsgroepe te verstaan. Die bevindinge van hierdie studie ondersteun verder oor die algemeen wat in die bestaande literatuur rapporteer word oor die ervarings van mense met ander kroniese siektetoestande en dra dus by tot die beperkte navorsing wat tot op hede daaroor beskikbaar is. Laasgenoemde kan heel moontlik gesien word as een van die belangrikste bydraes van hierdie studie, gegewe die eksponensiële groei in die gebruik van aanlyn ondersteuningsgroepe onder mense met verskeie kroniese siektetoestande wêreldwyd. Dit is my hoop dat die perspektiewe van die MS-lyers wat aangebied is in hierdie studie sal voortgaan om bewustheid te verhoog oor hierdie degeneratiewe toestand en verder ʼn opvoedkundige bydrae sal lewer tot die medici, familie en vriende van diegene met MS. Op ʼn praktiese vlak kan hierdie studie veral ʼn bydrae lewer tot gesondheidsorgwerkers wat met MS-lyers werk, deur hulle in te lig oor die waarde wat hierdie tipe van aanlyn ondersteuningsgroep vir MS-lyers kan hê. Die gesondheidsorgwerkers kan weer mense met MS aanmoedig om deel te neem aan hierdie tipe aanlyn ondersteuningsgroepe en sodoende ʼn positiewe bydrae maak tot die ondersteuning wat hulle ontvang.ENGLISH ABSTRACT: The experience of active involvement in an online Facebook support group, as a form of support for individuals who are diagnosed with Multiple Sclerosis Multiple Sclerosis (MS) is a debilitating, degenerative inflammatory disease in the central nervous system, and there is little research on support networks for people with MS. To date, the majority of studies have focused on the use of online support groups by individuals with more well-known diseases, such as cancer or arthritis; while more uncommon diseases, such as MS, have received little attention. One way of improving peer support models is to incorporate insights from individuals’ personal experiences which could present healthcare providers with an understanding of the skills that are required by individuals to cope with, and manage, a chronic disease on a daily basis. The aim of this study was therefore to investigate the impact of active involvement in an online Facebook support group for individuals with MS, with a specific focus on the support and challenges that relate to membership of this group. The sample consisted of eight females and two males whose ages ranged between 29 and 59 years (mean = 46.7). The duration since MS diagnosis ranged from 5 years to 18 years (mean = 9.4), and the period of membership of the online support group ranged from 3 months to 3 years (mean = 2.4). There were vast differences between participants in the years since diagnosis, as well as the duration of membership to the online support group, which resulted in a heterogeneous sample. MS is a complex disease which is diverse in nature and affects various individuals in different ways. It thus seemed fitting to examine the experiences of a heterogeneous sample that might be a more adequate representation of the broader population of MS sufferers who utilise online support groups. An exploratory qualitative research design was implemented, with thematic analysis being utilised to analyse and generate themes from the ten semi-structured interviews that were conducted with individuals diagnosed with MS, and actively involved in the online Facebook support group. Using the components of functional support (Sherbourne & Stewart 1991) as a means to interpret the results, five forms of support were identified as resources, namely: emotional support, informational support, social companionship, instrumental support, and appraisal support. Membership to an online support group for people with MS seems effectively to address the need for social companionship and emotional support that these individuals often require. The online support group also seems to address physical problems like fatigue and problems with mobility, which are experienced by individuals with MS in particular, because these individuals can be part of an online support group in the comfort of their own home without any geographical barriers. This is an aspect of instrumental support. Another benefit of online support groups that people with MS in particular benefit from is that online support groups provide people with the opportunity to reconsider their message and write their message at their own tempo before posting it on the group. This is an important benefit and a form of instrumental support because the cognitive functioning, and in particular the processing speed, of individuals that have been diagnosed with MS is often affected by the illness. It was also clear that there is an appreciation for the sharing of experiences that occurs among the group members. The group members often seem to learn from one another on how to make life easier for themselves. On the other hand, a number of challenges were also identified, namely: emotional challenges, limited information, mutual comparison and the need for personal interaction. Online support groups seem to be beneficial to the extent that they allow communication to occur between individuals from different parts of the world; however, difficulties may emerge when individuals desire personal contact. An interesting phenomenon that was noted in the appreciation theme related to mutual comparison between group members. Some indicated that they experienced this as a challenge, because the progression of some group members is often much faster in comparison to other group members. This leads to feelings of anxiety and uncertainty in some group members because they anticipate similar experiences of rapid decline and symptomatology. The findings of this study therefore suggest that although there is no personal contact between the group members, the hardships and challenges that group members experience and report still have an impact on these individuals. This is the first study of its kind to investigate the experiences related to active involvement of people with MS in an online support group. This study provides a platform to understand people with MS’s experiences of an online support group. It is clear from the experiences of the participants of this study that people with MS get support from the online support group in various ways, particularly in today’s society with rapid technological developments allowing access to online communication and information. The findings of this study support the general trends reported in the literature about the experiences of people with other chronic conditions, and therefore contribute to the paucity of research currently available on this topic. The latter is probably one of the most important contributions of this study, given the exponential growth in the use of online support groups among people who are living with different chronic conditions worldwide. It is my hope that the MS patient perspectives that were presented in this study will continue to increase awareness about this degenerative condition and furthermore make an educational contribution to the family and friends of people who suffer from MS. On a practical level, this study can make a particular contribution to healthcare providers who work with people with MS, by informing them about the value that online support could have for people who suffer from MS. The healthcare providers can in turn encourage people with MS to take part in support groups of this kind, and in that way contribute positively to the support that they receive.http://www.scielo.org.za/scielo.php?script=sci_abstract&pid=S0041-47512016000300006&lng=en&nrm=iso&tlng=afPublisher's versio

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

CITATION: Steadman, J. & Pretorius, C. 2014. The impact of an online Facebook support group for people with multiple sclerosis on non-active users. African Journal of Disability, 3(1): 1-10, doi: 10.4102/ajod.v3i1.132.The original publication is available at http://www.ajod.orgBackground: 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.http://www.ajod.org/index.php/ajod/article/view/132Publiser's versio

The experiences of individuals with multiple sclerosis in the Western Cape, South Africa

Publication of this article was funded by the Stellenbosch University Open Access Fund.The original publication is available at http://www.hsag.co.za/index.php/HSAG/article/view/756Please cite as follows:Pretorius, C. & Joubert, N. 2014. The experiences of individuals with Multiple Sclerosis in the Western Cape, South Africa. Health SA Gesondheid, 19(1), doi:10.4102/hsag.v19i1.756.Background: Multiple Sclerosis (MS) is a debilitating and degenerative lifelong neurological disease that seems to be growing increasingly more prevalent in South Africa. Objectives: The aim of this qualitative study was to explore the personal experiences of individuals with MS in the South African context. The focus of this study was on the challenges faced by individuals with MS, as well as the resources that help them to cope with this debilitating, neurological condition. Method: Thematic analysis was used to explore the semi-structured interviews that were conducted with ten individuals with MS. Results: Several themes emerged that related to the participants’ experiences of living with MS. These themes included several challenges faced by the participants on a daily basis, such as the process of being diagnosed, daily life, invisible illness and medical aid schemes. Numerous resources that help these individuals to cope with MS also emerged from the data analysis and consisted of social support, mobility aids, religion and knowledge about MS. Conclusion: It is evident from the findings of this study that although individuals living with MS, which is a debilitating neurological condition, face several challenges on a daily basis, they often have several resources that help them to cope effectively with this condition. The findings of this study regarding knowledge of the challenges faced and the resources utilised by individuals with MS will hopefully create awareness of the disease and contribute to and inform the design and implementation of interventions for such individuals.Stellenbosch UniversityPublishers' Versio

Misconceptions about traumatic brain injuries among South African university students

Objective. To investigate the incidence and type of misconceptions about traumatic brain injuries (TBIs) harboured by university students.  Method. A convenience sample of 705 university students were recruited and data were collected using an electronic survey. The link to the survey was sent via e-mail to all registered students at Stellenbosch University. The participants had to complete the Common Misconceptions about Traumatic Brain Injury (CM-TBI) questionnaire.  Results. The findings of this study suggest that the students subscribe to misconceptions from each of the 7 categories of misconceptions about TBIs. The mean percentages of misconceptions about TBIs were calculated and the amnesia (mean 49.7%) and unconsciousness (mean 46.1%) categories were identified as the categories about which the respondents had the most misconceptions, while the mean percentages of misconceptions were lower for the categories of recovery (mean 27.6%), rehabilitation (mean 26.56%), prevention (mean 20.8%), brain injury sequelae (mean 18.7%) and brain damage (mean 8.4%).  Conclusion. Generally, these findings appear to be in keeping with previous literature, which suggests that misconceptions about TBIs are common among the general population. This study’s identification of these misconceptions could help create awareness, provide a focus for information provision, and contribute to the development of educational intervention programmes tailored for the South African context

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

CITATION: Broodryk, M. & Pretorius, C. 2015. Initial experiences of family caregivers of survivors of a traumatic brain injury. African Journal of Disability, 4(1):1-7, doi:10.4102/ajod.v4i1.165.The original publication is available at http://www.ajod.orgBackground: 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.http://www.ajod.org/index.php/ajod/article/view/165Publisher's versio

People with psychogenic non-epileptic seizures : a South African perspective

CITATION: Pretorius, C. & Cronje, G. 2015. People with psychogenic non-epileptic seizures : a South African perspective. African Journal of Disability, 4(1):1-7, doi:10.4102/ajod.v4i1.176The original publication is available at http://www.ajod.orgBackground: 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.http://www.ajod.org/index.php/ajod/article/view/176Publisher's versio

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

Supplemental Material for Giving voice to the voiceless: Understanding the perceived needs of dementia family carers in Soweto, a South African township by Aqeela Mahomed and Chrisma Pretorius in Dementia.</p

Coping responses as predictors of satisfaction with life amongst a group of patients diagnosed with diabetes mellitus

The purpose of this study was to investigate the extent to which coping responses could predict the level of life satisfaction experienced by patients suffering from diabetes mellitus. A non-experimental, cross-sectional design was adopted. The sample consisted of 154 individuals(62 Type I diabetics, 80 Type II diabetics, and 12 individuals for whom diagnostic information was not available) recruited from the outpatient diabetes clinic at a large state hospital. All participants completed the Coping Responses Inventory – Adult Version, as well as the Satisfaction with Life Scale. Initially, Pearson product-moment correlation coefficients were calculated to examine the relationship between the predictor variables (coping responses) and the criterion variable(satisfaction with life). Hierarchical regression analyses were conducted to determine the amount of variance in the satisfaction with life scores that was explained by coping responses. The combination of approach and avoidance coping subscales accounted for 33% of the variance in the participants’ satisfaction with life scores. However, upon further analysis, the avoidance coping subscales were found to account for 28% of the variance in the sample’s satisfaction with life. The cognitive avoidance subscale and the acceptance or resignation subscale were found to correlate negatively with satisfaction with life at the 1% level of significance. It appears that approach coping responses do not predict the satisfaction with life experienced by individuals suffering from diabetes. However, avoidant coping responses, particularly cognitive avoidance and acceptance or resignation, are predictive of lower levels of satisfaction with life. Opsomming Die doel van hierdie navorsing was om vas te stel tot watter mate hanteringsgedrag (coping responses)die vlak van lewenstevredenheid by pasiënte wat aan diabetes ly kan voorspel. ’n Nie-eksperimentele, dwarssnit ontwerp is gebruik. Die steekproef het uit 154 individue (62 Tipe I-diabetes, 80 Tipe II-diabetes en 12 individue waarvan die diagnostiese inligting nie beskikbaar was nie) bestaan, wat van die buitepasiënte kliniek by ’n groot staatshospitaal verkry is. Alle deelnemers het die Coping Responses Inventory – Adult Version, sowel as die Satisfaction with Life Scale voltooi.Aanvanklik is die Pearson produkmoment korrelasie koëffisiënte bereken om die verhouding tussen die voorspeller-veranderlikes (coping responses/hanteringsgedrag) en die kriterium-veranderlike(satisfaction with life/lewenstevredenheid) te ondersoek. Hiërargiese regressie-analise is uitgevoer om die hoeveelheid variansie in die lewenstevredenheid-telling wat deur hanteringsgedrag verklaar is, te bepaal. Die kombinasie van approach en avoidance coping subscales het 33% van die variansie in die deelnemers se Lewenstevredenheid-telling verklaar. Na verdere ontleding is egter gevind dat die avoidance coping subscales 28% van die variansie in die lewenstevredenheid van die steekproef verklaar het.Daar is gevind dat die cognitive avoidance subscale en die acceptance or resignation subscale negatief op die 1% peil van betekenisvolheid met lewenstevredenheid korreleer. Dit blyk dat toenaderings (approach coping responses) nie die lewenstevredenheid by individue wat aan diabetes ly, voorspel nie. Vermydingsgedrag (avoidant coping responses), in besonder kognitiewe vermyding en aanvaarding of berusting, is egter voorspellend van laer vlakke van lewenstevredenheid

Cognitive rehabilitation groups : a thematic analysis of feasibility and perceived benefits for clients with moderate to severe traumatic brain injury living in the Western Cape

CITATION: Wilson, A., et al. 2015. Cognitive rehabilitation groups : a thematic analysis of feasibility and perceived benefits for clients with moderate to severe traumatic brain injury living in the Western Cape. African Journal of Disability, 4(1):1-7, doi:10.4102/ajod.v4i1.175.The original publication is available at http://www.ajod.orgBackground: Traumatic brain injury (TBI) has a significant impact on the burden of care within the South African setting, impacting on the individual, the family, and the community as a whole. Often the consequences of TBI are permanent, resulting in numerous financial and emotional stressors. Objective: This research focusses on the experience of outpatient cognitive rehabilitation groups for individuals who have suffered moderate to severe brain injuries within the South African setting. Method: Participants with moderate to severe brain injury were required to attend five cognitive rehabilitation groups and engage in a semistructured interview. Qualitative data were examined via thematic analysis, to determine participants’ subjective experiences of group participation. Results: There is a need within the South African setting for cognitive rehabilitation and support groups for individuals who have experienced a TBI. The benefits were notable for both the individuals attending and their support systems. In spite of the benefits there were notable limitations to attendance, including financial restrictions and transport limitations. Conclusion: According to participants and their families, there is a scarcity of resources within the Western Cape for clients who have sustained a TBI. Despite limitations in capacity to attend there appears to be a need for structured outpatient cognitive rehabilitation programmes integrating the complex cognitive and emotional challenges faced by individuals with TBI and their families.http://www.ajod.org/index.php/ajod/article/view/175Publisher's versio

The aetiology of psychogenic non-epileptic seizures: risk factors and comorbidities

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