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

Abstract

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 information to reduce their burden.

A framework for understanding user requirements for an information service: Defining the needs of informal carers

“…However, the findings do reflect those of other researchers and in fact provide more detail (Wollin et al 1999(Wollin et al , 2000. Depending on the micro time line interview technique to gather data did impose some limitations.…”

Needs and Psychosocial Outcomes of Caregivers of Individuals with Multiple Sclerosis in Guadalajara, Mexico

“…48,49 Previous researchers also found that caregivers frequently endorsed other specific needs, including the need for brief periods of relief from caregiving for rest and relaxation and to visit a doctor to reduce stress, discuss feeling "down," or manage health problems (eg, heart disease, high blood pressure, and flu/cold symptoms). 45,46 Other needs reported by researchers were help with accomplishing all that is expected of the caregiver, as well as general daily assistance from others. 43 …”

“…The present study used the MSNA, which measures 22 specific physical, self-concept, role function, and interdependence needs of caregivers of people with MS. However, the majority of previous studies used instruments other than the MSNA, 43,45,48,49 with different specific needs and categories. For example, Wollin et al 45 pilot-tested a modified version of the MSNA, which included 80 items.…”

“…Role function needs, including help with day-to-day patient care, 44,45 household duties, 46,47 handling increased financial burdens, 44,46,47 and obtaining more respite care, 44 were among the most important to MS caregivers. Frequent physical needs in caregivers of individuals with MS included more time to relax 44,46 and increased physician visits to reduce stress and physical health problems.…”

“…Frequent physical needs in caregivers of individuals with MS included more time to relax 44,46 and increased physician visits to reduce stress and physical health problems. 47 Common informational needs of MS caregivers involved increased awareness of disease progression and its symptoms, 44,45 as well as more medical advice from health-care professionals. 47,48 Finally, advice and support (eg, regarding self-concept and interdependence) were substantial needs reported by caregivers of individuals with MS. [47][48][49] Although there is emerging interest in MS in Latin America, the majority of researchers have focused on its epidemiological aspects, clinical profile, and medical treatment.…”