Family caregiver quality of life in multiple sclerosis among Kuwaitis: a controlled study

Abstract

BackgroundResearch interest in the quality of life (QOL) of persons with multiple sclerosis (MS) has been spurred by the need to broaden outcome measures. Far less of this interest has been directed at the family caregivers, who bear most of the burden of care. The objectives of the study were: First, to compare the subjective QOL of family caregivers of persons with relapsing remitting and progressive MS, with those of a matched general population sample and caregivers of diabetes and psychiatric patients. Second, to assess the relationship of QOL with caregiver attitudes to MS and patient's variables.MethodsConsecutive MS clinic attendees were assessed with the 26 – item WHOQOL Instrument, and for depression and disability. Similarly, caregivers independently rated their own QOL as well as their impression of patients' QOL and attitudes to patients' illness.ResultsThe 170 caregivers, mean age 35.7 years, had no significant diagnostic differences in QOL domain scores and attitudes to MS. Caregivers had significantly lower QOL than the general population control group for five out of six domains and the general facet (P < 0.01), but higher QOL than the patients. When the scores were corrected for patients' depression and disability, caregivers had similar QOL with the general population group for four domains. Using corrected scores, MS caregivers had lower scores than diabetic and psychiatric caregivers in the physical, psychological and social relations domains. Majority expressed negative attitudes to MS. Caregiver QOL was more affected by their fear of having MS than their feelings about the illness and caregiving role. Caregiver attitudes had mostly no significant impact on their proxy ratings of patients' QOL. The significant predictor of caregivers' overall QOL was their impression of patients' QOL.ConclusionCaregivers need specific attention if they are less educated, unemployed, afraid of having MS and caring for patients with longer duration of illness and less education. In particular, attention to patients' depression and disability could improve caregivers' QOL. Caregivers need specific programs to address fear of having MS, negative attitudes to illness and their unmet needs.

No man is an Island: The silent struggle of invisible caregivers

“…Two main themes emerged from the interpretations of the text: a silent struggle (I) and imprisoned and invisible (II). According to previous research, this study do confirms findings from the doctoral thesis of Søderlund [7], Manesh and Abedi [6], Alshubali et al [21], Knight et al [20], Buhse [23], as well as Vialtiano et al [24], which increases the validity in this current study.…”

“…Partners of individuals with MS experienced unpredictability and uncertainty. Alshubali et al [21] found that caregivers to family members suffering from MS are vulnerable and in need of specific attention. Despite this, family caregivers felt that health care personnel did not really understood their daily struggle according to Söderlund [7] and Sälström [22].…”

Assessment of quality of life among caregivers of persons with permanent disabilities attending rehabilitation centre in H. D. Kote Taluq, Mysore district, Karnataka, India

“…Contrary to the above findings, Asmahan F Alshubaili and Jude U Ohaeri observed in their study that lower education was associated with lower QOL score. 9 Daniel Fu Keung Wong observed that caregivers with lower educational status had more difficulties and lower score of QOL.…”

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

“…Little research on caregivers of people with MS from other cultures has been conducted. 27,54 However, it is necessary, given the differences in cultural values, caregiving practices, and the availability of rehabilitation services within healthcare systems. For instance, adult day care, residential care, and respite services are limited in Latin America, although it is less costly to hire a full-time personal aide in these countries than in the United States.…”

“…24 Economic consequences of the condition may include decreased employment 25 and elevated hospital and medical costs. 26 Psychosocial outcomes often include reduced quality of life 27 as well as social anxiety, isolation, 28 and substance abuse. 29 Finally, emotional changes associated with MS include depression 30 and anxiety.…”