Experiences of Iranian family caregivers supporting individuals with multiple sclerosis : a qualitative study

Family members of patients are often considered informal primary caregivers, particularly for those living with chronic diseases including multiple sclerosis (MS). Caregivers often report increased burden and stress when caring for individuals with chronic care needs. It is important to explore the caregiver experience in the context of MS. The aim of this study is to describe the experiences of family caregivers caring for individuals with Multiple Sclerosis. A purposive sampling method was utilized. A total of eighteen family member caregivers of patients with multiple sclerosis participated in this study. Data were collected through semi-structured and in-depth interviews conducted in the multiple sclerosis society and hospitals of Tabriz in Iran. Data were analyzed using qualitative content analysis assisted by MAXQDA 10 software. Three main categories emerged from interviews about their caregiving experiences. These include 1) emotional reactions; 2) caregiver needs; and 3) caregiver expectations. Results of this study demonstrate that family caregivers of individuals with MS show different emotional reactions and have complex needs and expectations from other ‘non-caregiver' relatives and society. This study highlights the psychosocial, physical and economic needs of caregivers of individuals with MS and enhances social understanding of this impact of the condition. This may improve the support clinicians provide to family caregivers. There is need to develop targeted interventions that reduce caregiver burden for those caring for individuals with MS