Negative Feelings Due Multiple Sclerosis in Caregivers and Patients

Background: The MS unpredictable character and the disability that it causes may create negative feelings in persons with MS (PwMS) and in their caregivers and injure the interpersonal relations.

Objectives: To explore negative feelings due to MS in 70 PwMS and their caregivers and to study the mechanisms used by those that consider they have overcome frustration.

Methods: MS Cuba carried out a survey with 70 persons with MS (PwMS) and their caregivers. A face-to-face or telephone open interview was realized. All the PwMS included in this study have a high degree of disability, Pyramidal Functions equally or higher than 5 measured by the Kurztke FSS and were diagnosed after the age of 20.

Results: The main negative feelings found among the caregivers were anxiety, depression, anguish, uncertainty, pity, unhappiness, obligation and frustration. Among the PwMS, there were anxiety, depression, anguish, uncertainty, unhappiness and frustration. The caregivers’ most common feelings were anxiety and depression. All the PwMS and the 88.5 % of the caregivers suffer frustrations for professional, familiar, economical and psychological reasons. There were found the following compensation mechanisms: confrontation to the illness and fight to carry out expectations, search of new expectations and development in other spheres as well as a combination of both. The 27.1 % of the caregivers and the 16.3 % of the PwMS completed their previous expectations, one or another way. Correlation between the educational level and the frustration overcoming was equal to 0.7, what is significant. The caregivers’ most common feelings were anxiety and depression. It was interesting that all the people with MS that overcame their frustrations were among for those their caregivers did not feel pity. Only two PwMS overcame frustration in spite of the caregivers’ pity. It was not possible to correlate other caregivers’ negative feelings with the PwMS frustration.

Conclusions: The frustration could be surmounted and the success depends on, in the first place, the PwMS educational level and, at least partially, on caregivers' attitude.