Membership in non-governmental organisations and quality of life among people suffering multiple sclerosis

Author(s): Elżbieta Szczygieł, Małgorzata Pokrywa, Joanna Golec, Aneta Bac, Anna Marchewka, Jerzy Walocha, Edward Golec

Introduction. Multiple sclerosis (MS) is a disease which occupies a special place among neurological diseases. In human pathology, it is the most frequent demyelination disease, in the course of which primary damage is inflicted on myelin in the central nervous system. The neurological symptoms that accompany the disease cause problems which affect not only patients themselves but also their families. The pharmacological treatments developed so far do not combat the disease, but can visibly improve the patient’s quality of life, provided that they are supplemented by motor physical therapy. In addition, NGOs specialising in welfare work and physiological help for people suffering from multiple sclerosis have an essential role to play. The objective of this study is analysis of the influence of membership in NGOs for MS patients on their quality of life. Research material. The paper is based on research involving a group of 40 people, including 22 women (55%) and 18 men (45%). These were divided into two groups of 20 people. The first group was made up of people not associated with any support group, while the other was comprised of members of organisations supporting MS-affected people. Method. The research was based on the results of the ”Quality of Life Index” survey, taking into account the patients’ satisfaction with various aspects of their life as well as the Repta Functional Index. Results. The level of satisfaction and the functional condition of MS patients is different for each group. It was observed that their satisfaction level depends on their existing functional limitations. The functional condition of the group of people who are active in aid organisations is lower, which has an impact on the assessment of satisfaction with various aspects of life, and on the general assessment of their level of satisfaction with life. In the case of people who belong to NGOs, both indicators are lower than in the case of people who manage on their own. In turn, people who belong to organisations more often take advantage of rehabilitation and specialised help. Conclusions. People who belong to NGOs more often resort to rehabilitation and specialised help. Membership in such organisations makes it easier to receive help or information on how and under what conditions it can be obtained.