| Abstract |
BACKGROUND: Multiple Sclerosis is a chronic neurological, autoimmune disease that usually affects young adults during their productive age. The cause, diagnosis and treatment continue to be an area of research. The quality of life of the patients and their intimates and also the relationship between them are primarily affected after the announcement of the diagnosis and for the rest of their lives. Their family members are called to become caregivers, playing a vital and challenging role in supporting the patient in his daily life.
PURPOSE: The purpose of the study was to investigate the attitude and behavior of the family of patients with multiple sclerosis visiting the University Hospital of Heraklion and how this disease in the daily lives of patients.
METHOLOGY: It was a cross-sectional study conducted at the University Hospital of Heraklion. The collection and recording of the data lasted two months, December 2021 - January 2022. The study population was 60 people with officially diagnosed multiple sclerosis who presented with symptoms and received appropriate treatment for more than three years. The individuals had been residents of Crete for at least 20 years and had not been diagnosed with depression or any other psychiatric disorder. Concerning depressive assistance, it should not have preceded the day of diagnosis of multiple sclerosis. Data collection was done by obtaining Demographic, Social characteristics and data about the disease. Finally, two clinical tools were used: The 13 item Family Support Scale, which assesses the degree of support of the immediate family environment or the subjective sense of support from the family, which a person receives from family members. Moreover, the Sf-36 “Short Form 36 Health Survey” questionnaire is a psychometric instrument used to calculate the self-esteem of quality of life and compare the health level of different groups of the population.
RESULTS: 60% of the respondents were women, 43.3% of the sample were in the age category from 42-53 years. 48.3% were married, and 60% had children. Most of the sample was 46.7% High School Graduates. The disease diagnosis in 51.7% was made at the age of 15 to 29 years. The Chi-Square Test using the Bootstrap technique showed no statistically significant difference between gender, age, marital status, children, educational background, employment status, place of residence and age, during which the disease was diagnosed. The majority of respondents regarding the form of the disease, 71.7%, had a recurrent form, 16.7% had a primary progression, while 11.7% had a secondary progression. However, the form of the disease did not appear to be statistically significant between the sexes. Gender, however, showed a statistically significant correlation with the sense of family support of the patients in the sample, based explicitly on the statement , of the person suffering from multiple sclerosis how I am primarily responsible for our work at home" (p≤0.05) and the statement , Frictions at home often absorb all the energy" (p<0.05). Finally, in both analyzes models regarding the form of the disease, it was found that the feeling of family support is significantly negatively related to the form of the disease (p <0.005), regarding the statement: "Frictions at home often absorb all the energy" and also negatively significant regarding the statement: "It is impossible to calm down at home" (p <0.005). The lower the values in the answers of one scale, the higher the importance of the responses of the other scale. However, regarding the different characteristics of the respondents, they do not seem to be statistically significantly correlated with the form of the disease, nor with any of the two scales CONCLUSION: Multiple sclerosis is considered an unpredictable disease that affects the quality of life of patients while at the same time creating stress and insecurity for the patient and his family. Because it is often diagnosed in early adulthood, it affects developmental experiences, family and career development and maintenance. Diversity has a significant social, psychological and physical impact on the affected person and his multiple works. Companions often become caregivers. The family has a significant impact on the course and outcome of the disease. At the same time, however, the family environment is a dynamic system that changes over time, which means that protective factors can be transformed into negatives and vice versa. The high opinion of the family support on the part of the patient significantly affects his quality of life and can act protectively against the difficult physical and especially the psychological challenges that the disease brings.
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