The experiences of individuals with Multiple Sclerosis in the Western Cape, South Africa

Abstract

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. Agtergrond: Veelvuldige Sklerose (VS) is ‘n aftakelende en degerenatiewe lewenslange neurologiese toestand wat blyk of dit toenemend meer algemeen in Suid-Afrika voorkom.Objektief: Die doel van hierdie kwalitatiewe studie was om die persoonlike ervarings van individue met VS binne die Suid-Afrikaanse konteks te ondersoek.Die fokus van hierdie studie was op die uitdagings wat individue met VS in die gesig staar, sowel as die hulpbronne wat hulle help met die hantering van hierdie ernstige neurologiese toestand.Metode: Tematiese analise is gebruik om die semi-gestruktureerde onderhoude te ondersoek, wat gevoer is met tien individue met VS.Resultate: Verskeie temas wat verband hou met die deelnemers se ervarings van ‘n lewe met VS het na vore gekom. Hierdie temas het verskeie uitdagingsingesluit wat die deelnemers op ‘n daaglikse basis in die gesig staar, soos die proses om korrek gediagnoseer te word, daaglikse lewe, onsigbare siekte en mediese fonds skemas. ‘n Aantal hulpbronne wat hierdie individue help om VS te hanteer het ook na vore gekom en bestaan uit sosiale ondersteuning, mobiliteit hulpmiddels, geloof en kennis oor VS.Gevolgtrekking: Dit is duidelik uit die bevindinge dat alhoewel individue wat lewe met VS, wat ‘n ernstige neurologiese toestand is, verskeie uitdaging op ‘n daaglikse basis in die gesig staar, hulle beskik oor verskeie hulpbronne wat hulle help om hierdie toestand effektief te hanteer. Die bevindinge van hierdiestudie rakende kennis van die uitdagings wat hierdie individue in die gesig staar en die hulpbronne wat individue met VS gebruik sal hopelik ‘n bewustheid skep en bydra tot die ontwerp en implimentering van intervensies vir sulke individue.

‘It struck at the heart of who I thought I was’: A meta‐synthesis of the qualitative literature examining the experiences of people with multiple sclerosis

“…This theme included experiences related to diagnosis, treatment, and information and support seeking. While some people described a sense of relief [31][32][33][34] and validation 13,31,34,35 at diagnosis, followed by direction to support services, 34,35 many highlighted extensive self-directed efforts to meet their information needs at an already stressful time. 10,17,32,33,36-39 Several studies referred to people's experiences of receiving insufficient information and support from health-care professionals at this time.…”

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

“…2008;Mohr e.a. 1999;Pretorius & Joubert 2014;Schwartz & Frohner, 2005). Dit is omdat sosiale ondersteuning dikwels bydra tot ʼn beter selfbeeld, afname in depressie en toename in lewenskwaliteit (Pretorius & Joubert 2014;Schwartz & Frohner 2005).…”

“…2012). Dit is daarom nodig dat individue wat met hierdie siekte gediagnoseer is, ondersteuning kry om die siekte te hanteer (Pretorius & Joubert 2014). Verskeie studies het bevind dat sosiale ondersteuning belangrik is vir MS-lyers omdat dit dikwels help met die hantering van die uitdagings wat daarmee geassosieer word (Malcomson e.a.…”

“…2008;Mohr e.a. 1999;Pretorius & Joubert 2014). Ondersteuningsgroepe, meer spesifiek ʼn vorm van sosiale ondersteuning, is ʼn voorbeeld van een van die ondersteuningsbronne wat MS lyers gebruik (Mohr e.a.…”

Support Group Participation

“…2 Social support can be beneficial to help patients cope emotionally and may increase self-esteem, decrease depression, and improve quality of life. 4 Support groups can also be a source of information about MS. Research on the benefit of suitable support networks for people with MS is limited, 5 and even more so regarding newly diagnosed patients.…”