Caregiver Burden: Meeting the Needs of People who Support the Person with Multiple Sclerosis (original) (raw)
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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.
Caregiver burden among informal caregivers assisting people with multiple sclerosis
International journal of MS care, 2011
Multiple sclerosis (MS) burdens not only patients but also their informal or family caregivers. This study was conducted to identify characteristics of caregivers, caregiving, and MS patients receiving informal care that are associated with caregiving burden. Data were collected through a national survey of informal MS caregivers and analyzed using an ordered logistic regression model to identify factors associated with burden. Burden was found to be significantly greater among male caregivers than among female caregivers. Moreover, greater burden was associated with more frequent patient bladder dysfunction, more hours per week spent providing assistance, and greater restriction on the caregiver's ability to perform daily activities because of caregiving responsibilities. A strong association was found between the mental health status of the caregiver and burden. Health professionals should be sensitive to the impact of caregiving on the mental health of MS caregivers. The resu...
The needs of carers of people with multiple sclerosis: a literature review
2009
The needs of carers of people with multiple sclerosis: a literature review People with multiple sclerosis depend heavily upon their families and other informal carers as they receive limited support from health-care professionals or health-care services. Adopting the carer role results in a life-changing experience, which may bring rewards and challenges to the carer. This paper reviews the research addressing the experiences of carers of people with multiple sclerosis published between 2002 and 2007 building upon an earlier review. The literature suggests that carers have needs across various domains and that spouses/partners have particular needs. Much of the evidence has limited generalizibility although the geographical spread of the evidence indicates considerable consistency of need. The review describes ongoing carer needs which require supportive care and provides the basis for the development and testing of carer interventions for use by health-care professionals.
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,"...
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...
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...
2003
Purpose: To describe the profile of Multiple Sclerosis (MS) patient caregivers and assess their caregiving burden. Methods: A total of 91 MS patients, recruited from a Spanish longitudinal survey, and their corresponding caregivers were studied. Caregivers were administered a questionnaire that collected social and demographic data, and a generic caregiver burden interview (the Zarit scale). Furthermore, MS patients were administered a specific health-related quality of life (HRQoL) instrument (the modified Spanish version of the Functional Assessment of Multiple Sclerosis). Results: 24.5% of the sample required caregivers to perform activities of daily life. Caregiver profile was as follows: 67% female; mean age, 51.5 + 14.1 years; and mean daily time devoted to care, 11.5 + 8.2 h. Most caregivers had some type of support, 67% informal and 31.9% formal. The amount of time spent in caring for relatives was the main item determining the burden of MS-patient caregivers. Moreover, MS patient's HRQoL showed a moderate inverse correlation with caregiver burden. Conclusions: In contrast to previous studies, most Spanish MSpatient caregivers are female, and there is a considerable percentage of parent caregivers. A greater degree of formal support and an improvement in MS patients' HRQoL may serve to reduce caregiver burden.
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...
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.