Illness Perception and Well-Being Among Persons with Multiple Sclerosis and Their Caregivers

Abstract

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.

Beyond Ryff's scale: Comprehensive measures of eudaimonic well‐being in clinical populations. A systematic review

“…The role of EWB appears to be crucial also for the adaptation to neurological conditions, such as MS. Strober () found that the levels of flourishing in MS patients were influenced by the presence of a Type D personality diagnosis, by the levels of depression and by the disease management skills. Similarly, Bassi et al () documented that EWB (measured with Ryff's PWB) was negatively associated with negative emotional response to the illness in MS patients. Moreover, authors found that PWB was higher in those patients who reported a better understanding of their illness.…”

Psychometric approach of the revised illness perception questionnaire for oral health (IPQ‐R‐OH) in patients with periodontal disease

“…In this model, people regulate both their behavioral and emotional reactions to illness based on 1) ideas about the label and nature of illness and its associated symptoms and the targets for change (identity); 2) beliefs about why they developed their illness (causes), 3) perceptions regarding amenability of the illness to being cured, prevented, or treated (cure/control); 4) beliefs about the seriousness of the disease and impact upon the everyday individuals’ life (consequences); 5) beliefs about how long an illness may last, including symptoms and recovery (timeline‐acute/chronic); 6) feelings that arise as a result of the illness, such as anxiety or depression following diagnosis of a condition (emotional representations); 7) degree to which individuals feel they understand a specific illness (illness coherence); and 8) perceptions about variability in symptoms (timeline‐cyclical) . Strong illness identity, high emotional representations, low illness coherence, low personal control, low treatment control, severe perceived consequences, and chronic perceived timeline of illness have been shown to be related to poor well‐being, higher psychological distress, and slower recovery in various chronic illnesses …”

Perceptions of Multiple Sclerosis in Hispanic Americans

“…In this multivariable logistic model, older age at immigration is Although limited data exist in MS, recent research suggests that MS-related well-being is primarily predicted by patients' own illness beliefs. Bassi and colleagues 17 also showed that beyond the beliefs of the individuals affected with MS, the caregivers' well-being was primarily predicted by their own beliefs as well. General self-efficacy, perception of treatment control, and realistic MS timeline perspectives have been reported to be important correlates of self-management in MS, more so than clinical variables.…”

“…15 Recently, illness perceptions have been described in white populations to be important determinants of MS treatment preference and management. [16][17][18][19][20] However, perceptions of the cause of MS have not been particularly studied in Hispanic Americans with MS. Understanding perceptions of illness in Hispanics with MS could nurture the development of culturally competent programs, identify gaps in health-care efficacy, and provide an avenue for future health interventions to reduce ethnic and racial disparities in MS.…”