What can we learn from the personal insights of individuals living and coping with Multiple Sclerosis?

Malcomson, KS; Lowe-Strong, Andrea; Dunwoody, Lynn

doi:10.1080/09638280701400730

Cited by 85 publications

(155 citation statements)

References 25 publications

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“…The MS guidance (NICE 2014) incorporates qualitative studies, but while none define self-management, collectively they describe implicit expectations that patients devise their own mechanisms for 'going away and living with it' (e.g. Malcomson et al 2008). More recent qualitative studies have identified a lack of ongoing provision to support self-management (Deibel et al 2013) and shown how people with MS often receive generic rather than tailored information and education (Chaplin et al 2012).…”

Section: Self-managementmentioning

confidence: 99%

A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis

2016

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Abstract:This paper explores how people with progressive Multiple Sclerosis (MS) give meaning to their experiences. It builds upon the self-management literature, which has captured the tension between the desire for retaining normalcy and the increasing burden of self-management associated with chronic disease progression. This repeat interview study is empirically grounded in twenty eight interviews with fourteen people with progressive MS. We identified gender differences in diagnosis-seeking which impacted upon subsequent sense-making. Male respondents found a diagnosis of MS difficult to come to terms with, and an enduring sense of loss or anger could inhibit further sense-making. A diagnosis of MS was more difficult to obtain for women respondents, and any sense of certainty that diagnosis provided framed their subsequent sense-making strategies. The complex sequelae of MS require that self-management strategies are both contextual and timely; although even the most accomplished selfmanagers can lose their sense of self with neurodegeneration. Disease progression can be associated with suicidal ideation, suggesting the need for greater dialogue to ensure that people with MS are adequately supported to fulfil their quality of life at all stages of neurodegeneration. These lay perspectives emphasise the articulation of affect rather than the rendering of a medical diagnosis, although diagnosis may provide a degree of certainty in the short term. The ethos of self-management ensures people attempt to retain their sense of 'normality' and existent social roles for as long as possible, but this ethos can negate both ones' ability to selfmanage and the management of self.http://mc.manuscriptcentral.com/health Health: an interdisciplinary journal for the social study of health, Illness and medicine This repeat interview study is empirically grounded in twenty eight interviews with fourteen people with progressive MS. We identified gender differences in diagnosisseeking which impacted upon subsequent sense-making. Male respondents found a diagnosis of MS difficult to come to terms with, and an enduring sense of loss or anger could inhibit further sense-making. A diagnosis of MS was more difficult to obtain for women respondents, and any sense of certainty that diagnosis provided framed their subsequent sense-making strategies. The complex sequelae of MS require that self-management strategies are both contextual and timely; although even the most accomplished self-managers can lose their sense of self with neurodegeneration. Disease progression can be associated with suicidal ideation, suggesting the need for greater dialogue to ensure that people with MS are adequately supported to fulfil their quality of life at all stages of neurodegeneration.These lay perspectives emphasise the articulation of affect rather than the rendering of a medical diagnosis, although diagnosis may provide a degree of certainty in the short term. The ethos of self-management ensures people attempt to retain their sense of 'normality' an...

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Section: Self-managementmentioning

confidence: 99%

A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis

2016

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“…Informational support is an important aspect of healthcare delivery for people with MS. Low levels of perceived provision of information is associated with distress and dissatisfaction with healthcare services [20]. A large qualitative study by Gulick [43], reported low levels of perceived informational support in both male and female participants with MS. As informational support was the 2 nd most provided support sub-type across the included studies, it suggests a great improvement in the provision of information for MS participants over the last 20 years.…”

Section: Benefi Ts Attributable To Social Supportmentioning

confidence: 99%

“…This can help reduce levels of distress amongst participants [20] during intervention sessions. Information, involving training sessions with the telerehabilitation technologies, should be constantly accessible to participants.…”

Section: Recommendations On the Use Of Informational Support To Incrementioning

confidence: 99%

“…Particular techniques like health coaching and motivational interviewing can enhance adherence to rehabilitation interventions. The delivery of timely and accurate informational support can improve emotional well-being and increase physical activity [19][20][21]. Literature has highlighted the indirect, positive effect that social support has on physical activity in MS participants, through increasing levels of self-ef icacy [22,23].…”

Section: Social Supportmentioning

confidence: 99%

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Determining the use and value of social support in Telerehabiliation Interventions for individuals with Multiple Sclerosis: A narrative synthesis review

Soundy¹

2017

J Nov Physiother Rehabil

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Background: Telerehabilitation has been identifi ed as an effective treatment that promotes exercise rehabilitation in individuals with multiple sclerosis (MS). Social support is recognised as a core element of such interventions. However further research is needed to consider the role and value of different social support domains. Aim:Review available literature to assess and synthesise the use and value of social support within telerehabilitation interventions for individuals with MS.Method: A narrative synthesis was conducted. A systematic search of included articles was conducted. Electronic databases were searched from inception to January 2017. Other search methods were undertaken. Evaluation and synthesis of included articles utilised risk of bias assessment and a 4-stage synthesis process.Main Results: A total of fourteen studies, involving 718 participants (505 female, 213 male; aggregated mean age 47.6 years) with MS, were included. Esteem support was the most frequently reported method of social support, followed by informational, emotional and tangible. It would appear social support can be benefi cial in assisting participants to adhere to treatment interventions. Visual feedback may be directly benefi cial to improve impaired balance in individuals with MS. A model for future interventions is provided. Conclusions:Social support appears to increase the adherence of participants with MS to telerehabilitation interventions. Unique fi ndings provide an indication for the direction and content of future interventions. Further research is necessary to ascertain the optimal types and frequencies of social support delivery and its effect on health outcomes for participants with MS.

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“…Other impacts identified were effects on sexual relationships (57%), effects on choice of career (51%) and 52% reported effects on long-term personal friendships and relationships. 37 In another study, Malcomson et al 38 conducted two qualitative focus group discussions to explore the impact of multiple sclerosis (MS) (n = 13, age 40 -67 years, mean disease duration = 17 years) on patients' lives. Several patients reported changes to their employment circumstances along with other disease-related impacts (interpersonal and social life, stress, unpredictability, fear and impact on daily living).…”

Section: Job and Career Choicementioning

confidence: 99%

Chronic diseases influence major life changing decisions: a new domain in quality of life research

2011

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SummaryThe purpose of this review is to identify knowledge about the influence of chronic disease on major life changing decisions (MLCDs). This review was carried out in three stages: identification of key search terms; selection of databases and searching parameters; and evaluation of references. Only two articles matched the main search term 'major life changing decisions'. No article reviewed or measured the influence of chronic disease on major life changing decisions. However, 76 articles and various sections of seven books were identified that provided insight into this area and these are reviewed in detail. This literature review has brought together previously scattered information on chronic disease impact on important patient life decisions. These include decisions related to having children, marriage and divorce, job and career choice, social life, holidays, travelling and education. Lifestyle decisions viewed by patients as major decisions are also documented. The influence of cancer on life decisions is discussed, as are affected life decisions of other family members. Very little information is available about the long-term impact of chronic disease on patients' lives and methodology to assess long-term impact is incomplete. This review points to a novel dimension to health-related outcome research, the impact of chronic disease on major life changing decisions, and its possible implication for patients' future health.

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What can we learn from the personal insights of individuals living and coping with Multiple Sclerosis?

Cited by 85 publications

References 25 publications

A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis

A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis

Determining the use and value of social support in Telerehabiliation Interventions for individuals with Multiple Sclerosis: A narrative synthesis review

Chronic diseases influence major life changing decisions: a new domain in quality of life research

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