Supportive and palliative care needs identified by multiple sclerosis patients and their families

Abstract

Given the duration, range of symptoms and distress often associated with MS, the findings of this research raise the important question of the role of palliative services in supporting the person with MS and his/her family.

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

“…4 6 found that caregivers agreed most with the following statements: "I receive support from my church" and "I receive help from community organizations," both interdependence needs. The findings of the present study are also consistent with those of other studies that have highlighted needs related to interdependence, such as obtaining help from other family members and friends, 43,67 receiving support from community sources, 48 and having enough money to meet their needs. 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).…”

“…The findings of the present study are also consistent with those of other studies that have highlighted needs related to interdependence, such as obtaining help from other family members and friends, 43,67 receiving support from community sources, 48 and having enough money to meet their needs. 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.…”

“…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.…”

“…For example, Wollin et al 45 pilot-tested a modified version of the MSNA, which included 80 items. In addition, Cockerill and Warren 43 used a 22-item scale measuring the level of care provided to individuals with MS, whereas Wollin et al 48 conducted a descriptive qualitative study, using a semistructured interview with open-ended questions. The variety of needs assessed, some overlapping and some not, may explain the differences in results across studies.…”

“…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. 6,50,51 In addition, many have examined the impact of the illness on the quality of life of people with MS. 52,53 There is a considerable amount of literature on caregivers of people with MS; however, most of these studies have focused on caregivers from developed countries in Europe or North America.…”