Impacts of chronic illness on families: Experiences of Iranian family of patients with Multiple Sclerosis: A Qualitative Study

Abstract

Family members are often the primary healthcare providers and support for patients with a chronic disease such as Multiple Sclerosis (MS). Families endure and encounter long term difficulties when caring for a person suffering from MS. This study was conducted to explain the family experiences with multiple sclerosis and their problem and concerns.In a qualitative research, based on conventional content analysis, 18 family caregivers of patients with MS were selected by using purposive sampling method. Data were collected through semi-structured and in-depth interviews conducted at the Multiple Sclerosis Society and hospitals of Tabriz in Iran from May to December of 2015. Data were analyzed according to qualitative content analysis by using the MAXQDA.10 software. Interviews identified three main categories regarding family caregiver experiences with MS: 1) disease onset crisis, 2) disease burden, and 3) living in the shadow of death. The results showed that family caregivers of MS patients face numerous problems and they are at risk for depression and a lower quality of life due to disease burden. Also the results revealed the main concerns of families are financial problems and fear of paralysis and patient be crippled. Healthcare providers can use these results to better support and care for patients and their family members in order to improve their quality of life and reduce disease complications. Keyword: Multiple Sclerosis; Family Caregivers; Chronic illness; Disease Burden; Qualitative Research.