Ter ou não ter um cuidador: Avaliação da influência do cuidador sobre a autopercepção da qualidade de vida de portadores da Doença de Parkinson

Abstract

Parkinson’s Disease (PD) is the second most common neurodegenerative disease, after Alzheimer's. Highly disabling and idiopathic, PD causes a dopaminergic decrease in the subcortical substantia nigra, causing both motor and non-motor symptoms, such as tremors, bradykinesia, muscle rigidity, postural instability, anxiety, depression, dementia, pain and fatigue; which, in turn, culminate in loss of autonomy and dependence, thus reducing the quality of life of patients who, as the disease progresses, increasingly need care from caregivers. About these caregivers, the literature points to a common profile, in which women in the family of the PD patient tend to assume this role, what can be explained by subjective, financial and even culturals reasons. In this relationship, then, between the family caregiver and the person being cared (patient with PD), the issue of family ties is unique, acting as a protective factor for the patient with PD, since, regardless of the role assumed by the family caregiver, the affection and complicity are highlighted in this care relationship. As stated above, this dissertation had the general objective of analyzing the self-perception of the quality of life of patients with PD and its relationship with the presence or absence of the caregiver, highlighting the role of the family and the family caregiver as a protective factor for the patient with PD. To this end, two complementary studies were carried out, which constituted two articles. The first of them had the general objective of analyzing the self-perception of the quality of life of patients with PD and its relationship with the presence or absence of the caregiver; while the second article aimed to demonstrate the role of the family, especially the family caregiver, in the care of dependents with PD. The sample was selected by convenience, with PD patients assisted at the Extension Project "Grupo de Assistência Neurofuncional ao Parkinsonian (GANP)", from the Physiotherapy Departmentthe of the State University of Paraíba (UEPB), in Campina Grande - PB. The participants were submitted to the following instruments: sociodemographic questionnaire, Parkinson's Disease Questionnaire (PDQ-39) and semi-structured interview Qualitative data analysis was performed using thematic categorical content analysis, while quantitative data were analyzed using the R programming language, version 3.4.4. In the first study, the general score of the participants in the PDQ-39 resulted in a good self-perception of Quality of Life (QoL), with “Mobility” and “Activities of Daily Living” being the dimensions that presented the most negative results, demonstrating the worst performance of the participants in these areas of life. As for the analysis of qualitative data, 6 thematic categories and 20 subcategories were highlighted. Thematic categories dealt with the following aspects: recognition of limitations and need for help, relationship with caregivers, loneliness and care, dependence and independence, quality of the relationship and effects of the relationship on the quality of life of PD patients. Given the above, it is possible to suggest that the presence of a caregiver is capable of influencing the QoL of PD patients, both positively and negatively. In the second study, it was observed that the majority of the participants were men, married, aged 60 years or more (elderly), retired and with a time of living with the diagnosis of PD for more than 3 years. All caregivers were family members of the PD patient and were female, most commonly the dependent person's wife, daughter or sister, following the same worldwide trend as in other studies regarding the caregiver's profile. Regarding the thematic categorical analysis, 4 categories, 15 subcategories and 64 content units were evidenced. The thematic categories dealt with the following aspects: feelings attributed to caregivers, feelings of loneliness and dependence on the caregiver, quality of the relationship between the person with PD and the caregiver, and the effects of the affective bond on the quality of life of the patient with PD. Given the above, it is possible to suggest that the family, especially the figure of the family caregiver, is capable of functioning as a protective factor for people with PD.