The cost and benefits of employment: a qualitative study of experiences of persons with multiple sclerosis

Johnson, Kurt; Yorkston, Kathryn M.; Klasner, Estelle R.; Kuehn, Carrie M.; Johnson, Erica K.; Amtmann, Dagmar

doi:10.1016/s0003-9993(03)00614-2

Cited by 114 publications

(86 citation statements)

References 15 publications

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“…Different attitudes towards management of fatigue were evident across the interviews, as has been previously identified in the literature, such as avoidance and accommodation of activity according to fatigue (Graydon, Bubela, Irvine, & Vincent, 1995; Heiwe & Dahlgren, 2004; Horigan et al ., 2013; Johnson et al ., 2004; Magnusson et al ., 1999; Mills & Young, 2008; Rhodes, Watson, & Hanson, 1988; Scott et al ., 2011; Stuifbergen & Rogers, 1997; Yngman‐Uhlin et al ., 2010), or restoring to various activities to cope with fatigue (Magnusson et al ., 1999; Mills & Young, 2008; Scott et al ., 2011; Wu & McSweeney, 2007; Yngman‐Uhlin et al ., 2010). According to a quantitative study, avoidance coping was an independent predictor of greater fatigue over time in RA (Scharloo et al ., 1999).…”

Section: Discussionmentioning

confidence: 99%

‘It's when you're not doing too much you feel tired’: A qualitative exploration of fatigue in end‐stage kidney disease

Picariello

Moss‐Morris

Macdougall

et al. 2017

British J Health Psychol

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BackgroundFatigue is commonly experienced in end‐stage kidney disease (ESKD) patients. In order to develop patient‐centred psychosocial interventions to help patients manage fatigue symptoms, a more in‐depth understanding regarding the experience of fatigue is needed.ObjectiveThe objective of this study was to explore renal patients’ experiences of fatigue, across renal replacement therapy (RRT) modalities.MethodsTwenty‐five in‐depth semi‐structured interviews were conducted. Interviews were audio‐taped, transcribed, and analysed using inductive thematic analysis.ResultsMain themes included the strong role of the illness and treatment in the aetiology of fatigue. Two contrasting streams of illness–fatigue interpretations emerged: catastrophizing versus normalizing. Participants emphasized the importance of having a sense of purpose in facilitating active management of fatigue. Many participants described the consequences of fatigue on their functioning. Low mood, frustration, and anger were common emotional consequences of fatigue. Three dominant fatigue management strategies emerged: one related to accommodation of activities around fatigue, another on increasing activities to counteract fatigue, and the third one revolved around self‐compassion. Social support emerged as an important aspect of the fatigue experience, serving as a source of motivation, yet participants were wary of becoming a burden to others.ConclusionFindings identify casual attributions, behavioural and emotional reactions, management strategies, and facilitators of active management of fatigue in ESKD. Untying fatigue from the illness and treatment may help patients to develop alternative less catastrophic perceptions of fatigue, increase their perception of control over fatigue, and facilitate active fatigue management. Statement of contribution What is already known on this subject? Fatigue is persistent and debilitating in end‐stage kidney disease (ESKD), with no consistent treatment model.Promising evidence is available for psychological fatigue interventions in other chronic conditions.There is a gap in studies looking at the fatigue experiences of patients with ESKD across renal replacement therapies. What does this study add? Fatigue is not inherently negative, but shaped by patients’ beliefs and behaviours.Findings provide novel insights, for example, on the important role social support seems to play in fatigue.An in‐depth understanding of fatigue may help to inform a future patient‐centred intervention in ESKD.

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Section: Discussionmentioning

confidence: 99%

‘It's when you're not doing too much you feel tired’: A qualitative exploration of fatigue in end‐stage kidney disease

Picariello

Moss‐Morris

Macdougall

et al. 2017

British J Health Psychol

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“…Other studies have reported a supportive home environment, self-pacing and adaptive aids helped in maintaining employment [9,14].…”

Section: Introductionmentioning

confidence: 97%

“…A handful of studies on employment and MS have identified factors related to discrimination as barriers to successful employment, such as discriminatory attitudes held by family and healthcare professionals about chronic illness [2,7,14], inflexibility regarding time off [3] and architectural barriers within the working environment [13]. Other studies have reported a supportive home environment, self-pacing and adaptive aids helped in maintaining employment [9,14].…”

Section: Introductionmentioning

confidence: 99%

Factors that influence the employment status of people with multiple sclerosis: a multi-national study

Specchia²,

et al. 2009

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Paid employment is valuable for society and for the individual. A diagnosis of a chronic illness such as multiple sclerosis (MS) can influence a person's employment status. Previous studies have reported that demographic and disease-related aspects can predict whether a person with MS will leave their job. The aim of the study was to assess the factors that people with MS believe to contribute to their employment status and to determine whether any of these differentiate people with MS who are employed from those who are not employed. A multinational questionnaire assessed aspects related to employment that facilitate or hinder job maintenance. Data was collected in 18 European countries. A total of 1,141 questionnaires were completed. Of those responding, 694 (61%) subjects were employed and 477 (39%) were unemployed. The items that significantly differentiated the groups were related to MS symptoms, workplace environment and financial considerations. While MS influences employment status for many people who face difficult symptoms, aspects like a flexible work schedule and financial security are important and perhaps key to promoting job maintenance among people with MS.

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“…The maintenance of paid employment is a major issue for people with multiple sclerosis (MS), not just financially but for preserving self-image and social confidence [12]. Although the percentage of unemployed people with MS can vary across and within countries [5], those with MS tend to have lower participation rates in employment than people with other chronic diseases such as arthritis, diabetes or depression [2,25].…”

Section: Introductionmentioning

confidence: 99%

Living with multiple sclerosis: longitudinal changes in employment and the importance of symptom management

Tribe²,

2010

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People with multiple sclerosis (MS) tend to have lower participation in paid employment compared to those with other chronic diseases. In two large-sample, self-report surveys of MS patients performed 4 years apart, employment rates were measured both cross-sectionally and longitudinally. The reasons for employment loss and perceived risk of future employment loss were also assessed. A total of 1,135 patients responded to the first survey, 1,329 to the second, and 667 to both. Longitudinal loss of employment was 5.4% over the 4 years 2003-2007, a period of relative national economic prosperity. By 2007, 56% of MS patients had lost employment due to MS and 64% were not in the paid labour force. Regression analysis indicated that men were more likely than women to leave their employment because of their MS, and older people were more likely than younger ones to do so. Level of occupational skill using Australian Bureau of Statistics categorisation was not predictive of maintaining or losing employment. The main reasons reported by people with MS for their loss of employment involved the ineffective management of symptoms of MS in the workplace, rather than workplace-related factors including insufficient flexibility of employment conditions or being asked to leave or sacked. The most frequently listed symptoms relating to employment loss, and perceived risk of losing current employment, were fatigue, mobility-related symptoms, arm and hand difficulties, and cognitive deficits. These findings imply that many employees with MS are leaving their planning for effective symptom management, and for appropriate accommodations in the workplace, until such planning is too late to be effective. The potential advantages of early, supported disclosure of diagnosis to employers before MS symptoms become a problem are discussed.

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The cost and benefits of employment: a qualitative study of experiences of persons with multiple sclerosis

Cited by 114 publications

References 15 publications

‘It's when you're not doing too much you feel tired’: A qualitative exploration of fatigue in end‐stage kidney disease

‘It's when you're not doing too much you feel tired’: A qualitative exploration of fatigue in end‐stage kidney disease

Factors that influence the employment status of people with multiple sclerosis: a multi-national study

Living with multiple sclerosis: longitudinal changes in employment and the importance of symptom management

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