Compreendendo a esclerose múltipla: percepção da família e do paciente sobre o diagnóstico e enfrentamento da doença.

Abstract

Multiple sclerosis (MS) is a stigmatizing disease which has no cure and is degenerative, therefore compromise not only the organic functioning of whom affects as well the emotional part of their lives, harming their social interaction. This study sought to understand MS from the perception of the family and the patient about the diagnosis and coping with the disease, identifying the impact of the diagnosis in their lives, elucidating the resources to which they resort to tackle the disease, as well as identifying the prospects for the future of patient with MS and their primary caregiver. This is an exploratory research, using a qualitative approach, regarding the opinion, thought and beliefs of the subjects about MS. The study population consisted of all people with MS registered in the IX Regional Health Management of Paraíba, located in Cajazeiras and sample municipality defined by data saturation. Data collection was obtained through interviews using two structured scripts, one for the MS patient and one for the caregiver. The obtained qualitative data were analyzed using content analysis in its modality of thematic analysis, developed by Bardin (1977), which calls for the seizure of the common aspects linked to the majority of respondents associated with each theme. The results demonstrate the fragility of the support system to chronic disease, which needs to be extended beyond the medication. It was possible to note the need of improved support to the family and especially to the primary caregiver, which is vulnerable to emotional illness because of work overload.