Patient information and coping styles in multiple sclerosis

Lode, Kirsten; Jp, Larsen; Bru, Edvin; Klevan, G.; Myhr, Kjell–Morten; Nyland, Harald

doi:10.1177/1352458506073482

Cited by 78 publications

(62 citation statements)

References 26 publications

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“…The first resource was social support from various sources with the most important being support from family and friends, as well as support coming from MS support groups. Perceived social support has been found to be a major resource for participants and critical for coping with the challenges of MS in various studies (Coenen et al 2011;Goretti et al 2009;Lode et al 2007;Malcomson et al 2008;Mohr et al 1999). This study confirms the value of having a good social support system.…”

Section: Discussionsupporting

confidence: 74%

“…However, none of the participants in this study reported that their healthcare professional provided them with useful information, neither at the time of diagnosis nor during the progression of the disease. Sufficient information, once the diagnosis was received, could lead individuals with MS to using more effective coping styles such as planning and seeking social support (Lode et al 2007). On the other hand, participants who felt dissatisfied with the information from their doctor tended to use less-effective coping styles such as avoidance and denial (Lode et al 2007).…”

Section: Discussionmentioning

confidence: 99%

“…Sufficient information, once the diagnosis was received, could lead individuals with MS to using more effective coping styles such as planning and seeking social support (Lode et al 2007). On the other hand, participants who felt dissatisfied with the information from their doctor tended to use less-effective coping styles such as avoidance and denial (Lode et al 2007). This highlights the importance of quality information from various sources, including healthcare professionals.…”

Section: Discussionmentioning

confidence: 99%

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

Pretorius

Joubert

2014

Health SA Gesondheid

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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.

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Section: Discussionsupporting

confidence: 74%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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

Pretorius

Joubert

2014

Health SA Gesondheid

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“…34 Another possibility is that Pakenham's avoidance items did not effectively capture avoidant content. For example, items such as "I keep pushing myself to get things done" and "I go on as though nothing has happened" could potentially reflect denial rather than avoidance, which is one of the least used coping mechanisms among patients with MS. 35 The avoidance items may also be focused too heavily on behavioral avoidance, whereas other forms of avoidance might be more relevant (eg, emotional avoidance). Such possibilities are speculative; nonetheless, future refinement of the avoidance construct in the CMSS is necessary.…”

Section: Discussionmentioning

confidence: 99%

Coping with Multiple Sclerosis Scale

Parkerson¹,

Kehler²,

Sharpe³

et al. 2016

International Journal of MS Care

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Background: The Coping with Multiple Sclerosis Scale (CMSS) was developed to assess coping strategies specific to multiple sclerosis (MS). Despite its wide application in MS research, psychometric support for the CMSS remains limited to the initial factor analytic investigation by Pakenham in 2001. Methods: The current investigation assessed the factor structure and construct validity of the CMSS. Participants with MS (N = 453) completed the CMSS, as well as measures of disability related to MS (Multiple Sclerosis Impact Scale), quality of life (World Health Organization Quality of Life Brief Scale), and anxiety and depression (Hospital Anxiety and Depression Scale). Results: The original factor structure reported by Pakenham was a poor fit to the data. An alternate seven-factor structure was identified using exploratory factor analysis. Although there were some similarities with the existing CMSS subscales, differences in factor content and item loadings were found. Relationships between the revised CMSS subscales and additional measures were assessed, and the findings were consistent with previous research. Conclusions: Refinement of the CMSS is suggested, especially for subscales related to acceptance and avoidance strategies. Until further research is conducted on the revised CMSS, it is recommended that the original CMSS continue to be administered. Clinicians and researchers should be mindful of lack of support for the acceptance and avoidance subscales and should seek additional scales to assess these areas.

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“…10 Fatigue and depression, in turn, may influence the perception by the individual of life stress and the use of effective coping strategies. 2,7 While the adoption of positive, problem-solving coping strategies predicts long-term positive affect and well-being in MS, [11][12][13] fatigue, anxiety, and stress are associated with depression and reduced use of task-focused coping skills.…”

Section: Methods Participantsmentioning

confidence: 99%

The Effect of Biofeedback as a Psychological Intervention in Multiple Sclerosis: A Randomized Controlled Study

Mackay¹,

Buckingham²,

Schwartz

et al. 2015

International Journal of MS Care

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Patient information and coping styles in multiple sclerosis

Abstract: Optimizing the information process in the early phase of the disease may induce coping styles that produce a better adaption to living with MS.

Cited by 78 publications

References 26 publications

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

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

Coping with Multiple Sclerosis Scale

The Effect of Biofeedback as a Psychological Intervention in Multiple Sclerosis: A Randomized Controlled Study

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