Dimensión social y familiar: experiencias de cuidadores y personas con esclerosis múltiple. El estudio GEDMA

Abstract

Comparing the perceptions of multiple sclerosis (MS) patients and caregivers with regard to the samesocial and familial issues, as well as delving deeper into the factors that determine the quality of life of these patients and theirrelatives by using a qualitative methodology, can help us to complete the information on the same topic that has already beencollected using scales and quantitative protocols. Aim. To analyse how a group of people with MS and their caregiversperceive the disease by examining the way they talk about their experience with it. Subjects and methods. A qualitativemethodology was used; more particularly, data were obtained by holding six discussion groups made up of patients andcaregivers, who were members of MS patient associations. Results. People with MS reported the social stigma attached tosuffering from the disease. Many of the caregivers thought that patients with MS did not accept the disease and felt that overprotectionwas of little help in coming to terms with the disease and should therefore be avoided. Remunerated work wasdescribed by caregivers as a factor that, at the same time, generated and protected the burden. Conclusions. The social stigma, the lack of work and coming to terms with MS were the greatest issues for the patient, while support from the family network, the relationship that should be established with the patient, the impact of MS on children and the role played by remunerated work were the main dimensions of the disease for the caregiver.