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

Abstract

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.

Paediatric Multiple Sclerosis: A Scoping Review of Patients’ and Parents’ Perspectives

“…There is an extensive body of quantitative evidence highlighting that MS may threaten both the patients’ and their caregivers’ well-being, also depending on the level of accumulated disability [ 24 , 25 , 26 ]. However, it cannot be neglected that the caring experience lived by the families can be a powerful force towards adjustment and should be more valued by the physicians [ 27 , 28 ]. As a matter of fact, taking care of a person with MS does not entail only negative, but also positive aspects [ 29 ]: discovering personal and family resources, embrace change and apply coping strategies, such as supportive engagement and positive reframing.…”

Psychoeducational Interventions for Caregivers of Persons With Multiple Sclerosis: Protocol for a Randomized Trial

“…By examining patterns of use of the website, we will also be able to add to the understanding of the issues and concerns that are of most interest to caregivers of persons with multiple sclerosis. Although previous research has provided some descriptive data [ 6 , 8 , 10 ], these studies have primarily focused on describing poor psychological outcomes [ 4 , 5 , 14 , 15 ], coping strategies [ 7 , 9 , 13 ], or stressors [ 6 , 18 , 20 ], identified by caregivers of persons with multiple sclerosis. We will be able to identify topics of most interest (eg, self-care activities) and questions of greatest concern (eg, “How is multiple sclerosis treated?”) elicited directly from website usage of caregivers of persons with multiple sclerosis.…”

“…Investigators for the project who had expertise in the areas of caregiving (SLD and ARL), multiple sclerosis (MP, TP, and MJL), and website interventions (TP and MJL) developed the content for the project. The development of the video vignettes was based on previous research that identified the unique needs of caregivers of persons with multiple sclerosis [ 5 , 7 - 10 , 21 , 22 ], general caregiving research [ 26 - 31 ], and answers to a series of questions emailed to caregivers of persons with multiple sclerosis. The website developers oversaw the development and testing of the video vignettes and the overall website.…”

“…These informal caregivers, such as those of persons with other chronic illnesses (eg, Alzheimer disease and cancer), provide a variety of care and support that often vary according to the needs of the person with multiple sclerosis [ 5 , 6 ]. They are often frustrated by a lack of information regarding how to accommodate the changing needs of the person with multiple sclerosis, deal with the uncertainty of the course of the illness, and find support for their own emotional and physical needs [ 5 , 7 - 9 ]. Research has found that these caregivers experience negative physical and psychological outcomes that tend to increase as the disease progresses and care needs increase [ 10 - 13 ].…”

The care needs of persons with oropharyngeal dysphagia and their informal caregivers: A scoping review

“…Family members and friends of persons with OD may also be negatively affected by the condition, since they are frequently involved in the care process as informal caregivers, a term referring to individuals who provide practical and/or emotional support without payment [ 13 ]. Regardless of OD etiology, caring for persons with OD may result in remarkable physical and emotional burden [ 14 – 20 ].…”