Resumen

PRETORIUS, Chrisma. The experience of active involvement in an online Facebook support group, as a form of support for individuals who are diagnosed with Multiple Sclerosis. Tydskr. geesteswet. [online]. 2016, vol.56, n.3, pp.809-828. ISSN 2224-7912.  http://dx.doi.org/10.17159/2224-7912/2016/v56n3a6.

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 affectsvarious 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.

Palabras clave : multiple sclerosis; support groups; support; resources; challenges; online support group.

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