Dados do Trabalho

Título

CAREGIVER OVERLOAD IN THE CONTEXT OF RARE NEUROMUSCULAR DISEASES

Resumo

Rare neuromuscular diseases are chronic degenerative, presenting, in some cases, a motor and/or bulbar deficit. The patient may evolute with physical and psychological impairment, thus becoming dependent on a caregiver, which impacts the life of the patient and his companion. In view of this, the caregiver may present an overload in the face of the new demands that arose with the illness of their loved one.
Objectives: The objective of this study is to identify the presence of burden in caregivers of patients with rare neuromuscular diseases.
Methods: Cross-sectional and descriptive study, with selected rare neuromuscular diseases. As inclusion criteria, having rare neuromuscular disease and over 18 years of age. We excluded patients whose medical conditions made it impossible to understand or perform the tests (such as acute confusional state, aphasia, reduced level of consciousness, dementia, and sensory deficits). The following clinical instruments were applied to caregivers of patients: form with sociodemographic factors; ZARIT scale (caregiver burden assessment) and FACIT (Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being/FACIT-Sp). The functional independence measurement (FIM) and activities of daily living (BARTHEL) scales were applied to the patients, in addition to the PHQ-9 (Patient Health Questionnaire-9) to screen for major depressive episodes (MDE).
Results: 43 caregivers were included in the study; 28 patients (65.11%) were female and age was 42 ±18.4 years. ZARIT Scale was 14.0 (9.2-22.5), being a mild classification to caregiver overload, and the total score of FACIT-Sp was 33 (28.0-37.0). These results are correlated with caregivers of a group of patients who have 77 (55.2-111.5) of measure of functional independence, with modified dependency up to 25% and PHQ-9: 9 (5.0-13.0), with mild depression. However, this sample shows severe dependence for activities of daily living which showed in Barthel Scale with 42 (25.0-78.7).
Conclusions: The assessment of caregiver burden was mild in the studied sample of caregivers of our patients. This sample, despite presenting with severe dependence for activities of daily living, shows functional dependence modification of up to 25% and low probability of depression, besides the FACIT Spiritual Well-Being of the caregivers. It is possible that happens psychological biases when caregivers, especially family members, are questioned about their position as caregivers.

Palavras Chave

Caregivers; rare neuromuscular diseases; neuromuscular diseases