Die ervaring van aktiewe betrokkenheid by 'n aanlyn Facebook-ondersteuningsgroep as ʼn vorm van ondersteuning vir individue wat met Meervoudige Sklerose gediagnoseer is

Pretorius, Chrisma (2016-09)

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.za


AFRIKAANS 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.

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