Caregiver Burden in Multiple Sclerosis: Recent Trends and Future Directions

Maguire, Rebecca; Maguire, Phil

doi:10.1007/s11910-020-01043-5

Cited by 64 publications

(74 citation statements)

References 82 publications

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“…To the best of our knowledge, this was the first study investigating the relationship between job happiness, meaning, and satisfaction among health professionals working with MS patients. While the bulk of research has examined well-being among MS patients and their informal caregivers [ 28 , 29 ], few studies have specifically addressed formal caregivers [ 2 , 9 , 10 ], in spite of their central role in providing quality care [ 30 ].…”

Section: Discussionmentioning

confidence: 99%

Job satisfaction among physicians and nurses involved in the management of multiple sclerosis: the role of happiness and meaning at work

Negri

Cilia²,

Falautano

et al. 2021

Neurol Sci

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Objective Health professionals caring for persons with multiple sclerosis (MS) are faced with increasingly complex working conditions that can undermine their job satisfaction and the quality of their healthcare services. The aim of this study was to delve into health professionals’ job satisfaction by assessing the predictive role of happiness and meaning at work. Specifically, it was hypothesized that job meaning would moderate the relationship between job happiness and satisfaction. Methods The study hypothesis was tested among 108 healthcare professionals (53 physicians and 55 nurses) working in eight MS centers in Italy. Participants were administered the Eudaimonic and Hedonic Happiness Investigation and the Job Satisfaction Questionnaire. Hierarchical regression analysis was performed to test the moderating role of job meaning between job happiness and satisfaction. Results A significant interaction effect of job happiness and meaning on job satisfaction was identified for both physicians and nurses. When work was attributed low meaning, participants experiencing high job happiness were more satisfied with their work than those reporting low happiness; by contrast, when work was perceived as highly meaningful, participants’ levels of job happiness did not significantly contribute to job satisfaction. Conclusions Focusing on the interplay between job happiness and meaning, findings bring forward practical suggestions for the preservation and promotion of job satisfaction among health professionals working with MS patients. Particularly, they suggest the need to strengthen those job-related aspects that may enhance job meaning, thus providing health professionals with significant reasons to persevere in their work in the face of daily challenges.

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Section: Discussionmentioning

confidence: 99%

Job satisfaction among physicians and nurses involved in the management of multiple sclerosis: the role of happiness and meaning at work

Negri

Cilia²,

Falautano

et al. 2021

Neurol Sci

View full text Add to dashboard Cite

show abstract

“…None of the concerns we identified strictly reflect objective vs. subjective concerns (Hughes et al, 2014) , but some do reflect stress and demand (Savundranayagam et al, 2005) . Many recent efforts within (Ankri et al, 2005;Oh & Kim, 2018;Smith et al, 2018;Springate & Tremont, 2014) and beyond (Al-Rawashdeh et al, 2016;Kitko et al, 2020;Maguire & Maguire, 2020) Finally, two questions stood out: "Are you afraid of what the future holds for your relative?" and "Do you feel your relative is dependent on you?"…”

Section: Discussionmentioning

confidence: 99%

Caregiving concerns and clinical characteristics across neurodegenerative and cerebrovascular disorders in the Ontario Neurodegenerative Disease Research Initiative

Beaton¹,

Pm²,

Jb³

et al. 2020

Preprint

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Introduction: Informal caregivers for persons living with neurodegenerative disorders experience various types of stress and strain. Few studies have investigated the nature of caregiving concerns (“burdens”) and factors that contribute to those concerns, especially across multiple neurodegenerative and cerebrovascular disorders. Methods: The Ontario Neurodegenerative Disease Research Initiative (ONDRI) recruited participants with five neurodegenerative and cerebrovascular disorders (N = 504). Participants had study partners (family or friends) who provided information about themselves (e.g., the Zarit’s Burden Interview), as well as information about the clinical participants (e.g., activities of daily living). We used Correspondence Analysis to identify types of caregiving concerns in the Zarit’s, then identified relationships between those concerns and demographic, clinical, and cognitive measures.Results: We identified three components from the ZBI. The first was “overall burden” and was (1) strongly related to increases in neuropsychiatric symptoms and decreases in activities of daily living, (2) only moderately related to cognition, and (3) showed little-to-no differences between disorders. The second and third components revealed four types of caregiving concerns: current care of patient, future care of patient, personal concerns of study partner and social concerns of study partner. Discussion: We showed that caregiving concerns are multidimensional and individual experiences and emphasize the importance of support for the management of ADLs and neuropsychiatric symptoms, as well as individualized needs for caregiving assessment, education, training, and support strategies.

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“…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 ].…”

Section: Introductionmentioning

confidence: 99%

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

Douglas¹,

Plow²,

Packer³

et al. 2021

JMIR Res Protoc

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Background Of the approximately 1 million people living with multiple sclerosis in the United States, more than half receive informal, unpaid care or support from family or friends (caregivers). These caregivers report high levels of stress, anxiety, and negative emotions. Few researchers have conducted psychoeducational interventions for these caregivers. Objective This paper presents a protocol for a randomized clinical trial that aims to test the efficacy of two interventions for improving stress, anxiety, depression, and negative emotions for caregivers of persons with multiple sclerosis. Methods Participants included any self-identified family or friend caregiver of a person with multiple sclerosis. Data collection began in April 2021 and is expected to continue until November 2021. Participants will be randomized to receive either a website-only or a website-coaching intervention delivered for 6 weeks. Data will be collected at baseline, 6 weeks after baseline (after delivery of intervention), and 6 weeks later. Results The protocol was approved by the institutional review board of the Case Western Reserve University on January 21, 2021 (protocol 20201484). As of May 2021, 66 participants were enrolled. Conclusions Our findings will have implications for identifying the efficacy of two types of interventions developed for caregivers of persons with multiple sclerosis to reduce negative psychological outcomes associated with caregiving. Trial Registration ClinicalTrials.gov NCT04662008; http://clinicaltrials.gov/ct2/show/NCT04662008 International Registered Report Identifier (IRRID) DERR1-10.2196/30617

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Caregiver Burden in Multiple Sclerosis: Recent Trends and Future Directions

Cited by 64 publications

References 82 publications

Job satisfaction among physicians and nurses involved in the management of multiple sclerosis: the role of happiness and meaning at work

Job satisfaction among physicians and nurses involved in the management of multiple sclerosis: the role of happiness and meaning at work

Caregiving concerns and clinical characteristics across neurodegenerative and cerebrovascular disorders in the Ontario Neurodegenerative Disease Research Initiative

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

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