The coexistence of well- and ill-being in persons with multiple sclerosis, their caregivers and health professionals

BACKGROUND: Studies on emotional distress and health-related quality of life (HRQOL) broadened the traditional bio-medical focus in MS research, but little attention was paid to general well-being indicators. OBJECTIVE: To investigate for the first time both ill-being and well-being dimensions in persons with MS (PwMSs), caregivers and health professionals, in relation to both health and life in general. METHODS: A multi-center study assessed participants' depression (Beck Depression Inventory-II), HRQOL (Short Form-36), psychological well-being (Psychological Well-Being Scales), optimal experience (Flow Questionnaire), life satisfaction (Satisfaction with Life Scale), hedonic balance (Positive Affect and Negative Affect Schedule). Demographic and clinical information was also gathered. RESULTS: Overall, 71 PwMSs, 71 caregivers and 26 professionals were enrolled (N=168). Compared to healthy populations, PwMSs reported higher depression, lower HRQOL and lower general well-being; caregivers presented higher depression and lower general well-being; professionals reported the best ill- and well-being profiles. However, after controlling for demographic differences in age and education, hierarchical regressions highlighted that, though PwMSs reported higher depression and lower HRQOL than caregivers and professionals, their general well-being substantially leveled off. Conclusions Well-being coexists with ill-being. It can counterbalance the negative effects of disease or caregiving, and its measurement could complement and support medical intervention

Illness perceptions and well-being among persons with multiple sclerosis and their caregivers

This study jointly examined illness beliefs held by persons with multiple sclerosis (PwMS) and caregivers in relation to well-being. A group of 68 PwMS and their caregivers completed the Revised Illness Perception Questionnaire, Psychological Well-being Scales, Satisfaction with Life Scale and Positive Affect and Negative Affect Schedule. Findings revealed that PwMS' well-being was primarily predicted by their own illness beliefs, and that also caregivers' well-being was primarily predicted by their own beliefs. Across the two groups, well-being was positively associated with their belief that they understood the disease, and inversely associated with their representations of negative emotions. In addition, among PwMS, well-being was inversely associated with the number of symptoms they specifically attributed to their illness, while among caregivers, well-being was positively associated with beliefs that treatment could control the disease. Based on the study findings, psychoeducational and cognitive-behavioral strategies are suggested to promote well-being among PwMS and caregivers

Illness perceptions and psychological adjustment among persons with multiple sclerosis: the mediating role of coping strategies and social support

Purpose: The aim of this study was to test the Common Sense Model of Self-Regulation among persons with multiple sclerosis (MS), hypothesizing direct relations between illness beliefs and psychological adjustment, and indirect relations through coping strategies and social support. Materials and methods: Questionnaires were administered cross-sectionally to 680 participants (M age =40.1; 64.4% women) recruited in eight MS units to assess illness beliefs, coping strategies, social support, and adjustment indicators including life satisfaction, psychological well-being, mental health, and depression. Multiple mediational analyses were conducted to identify direct and indirect paths connecting illness beliefs to psychological outcomes. Results: Controlling for disability level, significant direct and indirect relationships were observed: Beliefs on illness coherence, personal and treatment control were associated with better adjustment; emotion representations and cyclic timeline with worse adjustment; illness identity, consequences, psychological and chance/bad luck causes with mixed positive and negative outcomes. Notably, findings identified recurrent and unique pathways connecting illness beliefs to the different indicators through meaning- and problem-focused coping strategies, avoidance and social support. Conclusions: The Common Sense Model can represent a useful framework to be tested in rehabilitation programs, jointly addressing illness beliefs and coping resources for the promotion of psychological adjustment among persons with MS.IMPLICATIONS FOR REHABILITATION Based on the Common Sense Model, the beliefs held by persons with MS about their illness are related to various aspects of psychological adjustment in multiple ways, both directly and indirectly through engagement in specific coping strategies and perception of social support. Clinicians supporting patients\u2019 adjustment may take into account that some illness beliefs were consistently associated with positive adjustment, some with poor adjustment, and some yielded mixed positive and negative results. Some ways in which coping strategies and social support connected illness beliefs to psychological adjustment were specific to the adjustment indicator under consideration including satisfaction with life, psychological well-being, mental health and depression. It may be worth testing comprehensive psychological interventions with the aim of raising awareness of one\u2019s illness beliefs, the strategies enacted in response to these beliefs, and the positive and negative relations of these processes with psychological adjustment, encompassing broad areas of individuals\u2019 lives and not only health-related issues or depression

The caring experience in multiple sclerosis : caregiving tasks, coping strategies and psychological well‐being

Informal caregivers play a crucial role in supporting persons with multiple sclerosis (MS), a neurodegenerative disease resulting in progressive worsening of physical and cognitive functioning. While research extensively showed that caregiving workload can be perceived as burdensome, little attention was devoted to the relation connecting workload and caregivers' well-being. Building on previous literature on stress and coping, the aim of this study was to test the mediational role of coping between caregivers' tasks and well-being. A group of 680 caregivers of persons with MS (M age = 46.45; 51.2% women) was recruited in eight Italian MS centres between June 2015 and December 2016. Caregiving tasks related to basic activities of daily living (ADL), instrumental ADL, psycho-emotional and social-practical care were assessed through the Caregiving Tasks in MS Scale; coping strategies (avoidance, criticism and coercion, practical assistance, supportive engagement, positive reframing) were investigated through the Coping with MS Caregiving Inventory; well-being was evaluated through the Psychological Well-Being Scales. Analyses substantiated a multi-mediation model including tasks in basic ADL, psycho-emotional and social-practical care, and the coping strategies avoidance, criticism/coercion, supportive engagement, positive reframing. Basic ADL care was negatively related to psychological well-being through lower use of supportive engagement and positive reframing. By contrast, psycho-emotional and social-practical tasks were both negatively and positively related to psychological well-being, through higher use of avoidance and criticism/coercion as well as supportive engagement and positive reframing. Findings suggest that caregiving tasks are not solely detrimental to well-being, but they may also provide a positive contribution through the adaptive coping strategies supportive engagement and positive reframing. Findings also highlighted task-specific areas that could be targeted in intervention in order to effectively lighten burden and promote well-being among caregivers

The Contribution of Illness Beliefs, Coping Strategies, and Social Support to Perceived Physical Health and Fatigue in Multiple Sclerosis

This study investigated the relationship of illness beliefs with perceived physical health and fatigue among persons with multiple sclerosis. Besides direct effects between illness beliefs and outcome measures, the mediational role of coping strategies and social support was examined. Six hundred and eighty persons with multiple sclerosis completed the Revised Illness Perception Questionnaire evaluating illness beliefs; the Brief COPE measuring problem-focused, meaning-focused, and avoidant strategies; the Multidimensional Scale of Perceived Social Support assessing social support; MS Quality of Life-54 investigating perceived physical health; and the Fatigue Severity Scale assessing physical fatigue. Mediation analyses were performed controlling for disability level. Direct effects were identified for both perceived physical health and fatigue, whereas indirect effects were observed only for physical health through avoidant strategies and social support. Based on present findings, psychological intervention may primarily target illness beliefs to address fatigue, and beliefs and coping strategies to improve perceived physical health

Assessing measurement invariance of MSQOL-54 across Italian and English versions

Purpose The Multiple Sclerosis Quality of Life-54 (MSQOL-54) is a specific multiple sclerosis (MS) health-related quality of life inventory consisting of 52 items organized into 12 subscales plus two single items. No study was found in literature assessing its measurement invariance across language versions. We investigated whether MSQOL-54 items provide unbiased measurements of underlying constructs across Italian and English versions. Methods Three constrained levels of measurement invariance were evaluated: configural invariance where equivalent numbers of factors/factor patterns were required; metric invariance where equivalent factor loadings were required; and scalar invariance where equivalent item intercepts between groups were required. Comparative fit index (CFI), root mean square error of approximation (RMSEA), and standardized root mean square residual (SRMR) fit indices and their changes between nested models were used to assess tenability of invariance constraints. Results Overall, the dataset included 3669 MS patients: 1605 (44%) Italian, mean age 41 years, 62% women, 69% with mild level of disability; 2064 (56%) English-speaking (840 [41%] from North America, 797 [39%] from Australasia, 427 [20%] from UK and Ireland), mean age 46 years, 83% women, 54% with mild level of disability. The configural invariance model showed acceptable fit (RMSEA = 0.052, CFI = 0.904, SRMR = 0.046); imposing loadings and intercepts equality constraints produced negligible worsening of fit (Delta RMSEA < 0.001, Delta CFI = - 0.002, Delta SRMR = 0.002 for metric invariance; Delta RMSEA = 0.003, Delta CFI = - 0.013, Delta SRMR = 0.003 for scalar invariance). Conclusions These findings support measurement invariance of the MSQOL-54 across the two language versions, suggesting that the questionnaire has the same meaning and the same measurement paramaters in the Italian and English versions