Multiple sclerosis patient caregivers: the relationship between their psychological and social needs and burden levels

Abstract

Purpose. The aim of this study was to discuss the burden of care-giving and the accompanied psychosocial experiences of caregivers.

Method. We studied 49 caregivers of persons with multiple sclerosis (MS) recruited from a Turkish MS organisation, measuring their needs using the Psychological and Social Needs Scale. To assess the level of their burdens, we used the Zarit Caregiver Burden Interview (ZCBI).

Results. Most of the caregivers (63.3%) were females with a mean age of 42.12 (13.8) years, and 55.1% of the caregivers were spouses. The majority of caregivers were involved in bathing (59.2%) and dressing (55.1%) activities. A significant correlation exists between the ZCBI and dimensions of the Psychological and the Social Needs Scale (hopelessness, conflict in decision making, leisure activity deficit and social isolation). The following variables increased the ZCBI scores for caregivers: insufficient income; unemployment; presence of chronic disease; financial problems; difficulties in maintaining responsibilities; caregiver responsibilities involving dressing and positioning of the patient.

Conclusion. Major predictors of feelings of being burdened were hopelessness, conflict in decision making, leisure activity deficits and social isolation of the person with MS. Psychological, social and financial support should be considered to reduce the burden of caregivers in Turkey.

Keywords:

• Multiple sclerosis
• caregivers
• psycho-social needs
• burden

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.