The needs of carers of people with multiple sclerosis: a literature review (original) (raw)

Caregiver Burden: Meeting the Needs of People who Support the Person with Multiple Sclerosis

International Journal of MS Care, 1999

Reliance on informal arrangements to support the person with multiple sclerosis (MS) is an increasingly common phenomenon. The focus of this Australian-based research is on the impact of the caregiver role, the identification of stressors that might prevent a continuation of the role, and the determination of resources needed by caregivers to continue in this role. Using surveys that were sent through the mail, the views of 34 people who care for an individual with MS were collected in order to identify the caregivers’ views on the impact of their role. The results indicate that caregivers provide between 2 and 10 hours daily of physical, emotional, financial, or informational support to the person with MS. The majority of people who provide support to individuals with MS are married to them; they provide care out of love; and they are overtaxed by day-to-day tasks with reduced physical, emotional, and financial resources. Caregivers requested practical support rather than informati...

Unmet needs of caregivers of severely affected multiple sclerosis patients: A qualitative study

Palliative & supportive care, 2015

Multiple sclerosis (MS) patients' caregivers are sometimes considered as "hidden patients." How much more this might be true for caregivers of severely affected MS patients has so far been scarcely studied. Palliative care also addressing relatives' needs might therefore be very relevant for these caregivers. However, we do not yet know which unmet needs they have and how these could be met. Our aim was to gain an insight into the subjectively unmet needs of caregivers of severely affected MS patients in Germany. The study employed a qualitative cross-sectional approach for assessing unmet needs. Twelve caregivers of severely affected MS patients were recruited using a convenience sampling approach. Face-to-face interviews were conducted, audiotaped, and transcribed verbatim, followed by qualitative content analysis. Unmet needs were sorted into the following categories: "relationship to physician," "individual support by the healthcare system,"...

Care Partners and Multiple Sclerosis

International Journal of MS Care, 2015

Background: Caring for someone with multiple sclerosis (MS) can be a stressful experience that requires clinical attention. We investigated the impact of caregiver stress on the emotional well-being and physical health of the MS care partner using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. Methods: Care partners of NARCOMS participants were invited to complete an online questionnaire that captured demographic characteristics, health status, caregiver burden as measured by the Zarit Caregiver Burden Interview, and impact of caregiving on employment. Results: Of 1446 care partners who agreed to participate, 1333 had complete data. Most were men (n = 825, 61.9%), with a mean (SD) age of 51.1 (11.2) years. The mean (SD) Zarit total score was 24.6 (15.1), placing the overall group in the mild caregiver burden range. Compared with male care partners, female care partners reported higher levels of burden and stress and more medication use for stress/anx...

Integrating Caregiver Support into Multiple Sclerosis Care

Multiple Sclerosis International, 2020

With loss of mobility in Multiple Sclerosis (MS) comes increase in caregiver assistance, burden, stress, and depression. This 6-month feasibility study used a pre-post design to test integration of a validated, behavioral, caregiving intervention into an ongoing MS clinic. Because the program focused on caregivers, there were no additional services provided to the persons living with MS other than usual medical care. Twenty-five MS caregivers received REACH VA (Resources for Enhancing All Caregivers’ Health in the VA), a six-session behavior-focused intervention during two to three months designed to increase caregiver skills in managing their own stress and burden and MS related issues and concerns, with a focus on mobility. Caregivers were assessed at baseline, three, and six months. Caregivers’ expectations of the program were to receive education on MS, caregiving and stress management skills, and support. The major benefits caregivers reported were understanding their loved one...

The care burden and social support levels of caregivers of patients with multiple sclerosis

Kontakt, 2017

This study aims to identify the relationship between social support, level of disability of patients and burden of care perceived by caregivers of individuals with multiple sclerosis. Methods: This descriptive and cross-sectional study was conducted with family caregivers of patients with multiple sclerosis admitted to the neurology clinic of a university hospital in eastern Turkey. Of the family caregivers of patients with MS, 98 family members participated in the study. The study data were collected using the "Zarit caregiver Burden inventory (ZcBi)", "expanded Disability Status Scale (eDSS)" and "Multidimensional Scale of Perceived Social Support (MSPSS)". Results: The mean burden of care score of the family members was 30.67 ± 15.66, and the mean social support score was found to be 54.88 ± 20.02. A negative significant correlation was found between the mean social support and burden of care scores of caregivers (r =-0.38, p < 0.01). furthermore, a positive correlation between mean burnout scores of caregivers and the loss of ability of the patients was found (r = 0.32, p < 0.01). Conclusion: The burden of care decreases as the social support perceived by the caregivers increases. The burden of caregivers increases with the increasing disability of the patients.

Caregivers of Older Persons With Multiple Sclerosis

Journal of Neuroscience Nursing, 2015

Objective: This study was conducted to determine which factors (clinical and demographic) are associated with mental and physical health-related quality of life (HRQOL) for caregivers of older persons with multiple sclerosis (MS). The Andersen's Healthcare Utilization Model guided this study. Knowledge of identified predictors of HRQOL may prompt nurses who care for persons with MS to address these issues and provide supportive care. Methods: A cross-sectional descriptive design was used to examine the relationship between patient with MS and caregiver clinical and demographic factors with caregiver physical and mental HRQOL. Patients with MS aged 60 years or older and their caregivers from four MS centers on Long Island, New York, self-selected into this study (n = 102). A caregiver survey was administered that collected demographic information and included validated questionnaires measuring HRQOL, caregiver burden, and caregiver perception of risk for neuropsychological impairment of patients with MS. Patient surveys collected demographic information and validated questionnaires measuring cognition, depression, and disability. Multivariate linear regression was used to examine patient and caregiver variables to explain caregiver physical and mental HRQOL. Results: The caregivers in this study were older (mean age = 61 years) with existing comorbidities. We found that caregiver mental HRQOL was negatively associated with patient depression and, surprisingly, positively associated with caregiver burden and caregiver comorbidity of heart disease. Caregiver physical HRQOL was negatively associated with caregiver comorbidities of arthritis and diabetes and lower household income. Conclusion: The challenges older caregivers face when caring for older persons with MS have been shown to affect their mental and physical QOL. Nurses who care for older patients with MS will increasingly rely on older caregivers to provide patient-centered interventions. This descriptive study, based on the Anderson theoretical model, provides insight on factors impacting older caregivers' HRQOL. Further research is necessary to elucidate the types of interventions that support them as they care for older patients with MS.

Quality of Life and Burden in caregivers of Multiple Sclerosis patients

Physiotherapy and Health Activity, 2017

Multiple sclerosis (MS) is one of the most disabling disorders of the central nervous system. Caregivers of individuals with MS may experience unique caregiver strain due to the age at onset and progressive nature of the disease. Additionally, because MS is more prevalent in women, men often become spousal caregivers. This places women in the position of being care recipients rather than caregivers. Some results also supported hypothesis that female caregivers reported a higher need for emotional support than male caregivers. As with female caregivers, decreased emotional support predicted poorer QoL among male caregivers.Caring for a MS patient may negatively impact several objective and subjective aspects of caregiver’s life, such as physical and emotional health, morale, work life, finances, social mobility, interpersonal relationships and sexual life. In studies assessing the psychological consequences of care a higher level of anxiety and depression in caregivers than in the ge...

Burden and quality of life in caregivers of persons with multiple sclerosis

Neurologia i Neurochirurgia Polska, 2012

Multiple sclerosis (MS) is the second most common cause of dis ability among nervous system diseases. This disease causes reduced quality of life of patients and those caring for them. Quality of life (QoL) measures consist of at least three broad domains: physical, mental and social. In the field of medicine, researchers have often used the concept of health-related quality of life, which specifically focuses on the impact of an illness and/or treatment on patients' perception of their status of health and on subjective well-being or satisfaction with life. Subjective factors of QoL in MS patients include perception of symptoms, level of fitness, self-image, satisfaction with fami ly life, work, the economic situation, interaction with other people, social support and life in general. Objective factors include the clinical picture of disease, social status, social and living conditions and the number and intensity of social contacts. While many generic and specific questionnaires have been developed to assess QoL in patients with MS, including general fatigue, there is a lack of specific questionnaires assessing QoL of caregivers. In this paper, a review of selected studies on QoL and caregiver burden in MS and a summary of the most popular questionnaires measuring burden and QoL are presented. Special attention is paid to the first questionnaire specific for QoL of carers of persons with MS, CAREQOL-MS by Benito-León et al.