Satisfação de pessoas com Doença de Parkinson quanto à fisioterapia e avaliação da sobrecarga de seus cuidadores

Abstract

Introduction: Parkinson's disease (PD) consists of the degeneration of dopaminergic neurons, causing symptoms such as muscle rigidity, postural instability, resting tremor and bradykinesia, interfering with the performance of daily activities. Considering the progressive and disabling nature of PD, the caregivers of these people are also affected, as they share difficulties and help them with their daily living needs, and can become physically and mentally overburdened. Faced with this reality, the assessment and monitoring not only of people with PD, but also of their caregivers, is necessary in health units in general. Objective: To assess the burden of caregivers of people with PD, in order to recognize the main complaints, as well as the existence of barriers and facilitators to integrate a physiotherapeutic treatment, including satisfaction with the physiotherapy of people with PD. Methods: The study involved 12 people with PD and 10 caregivers, who underwent a clinical and psychosocial assessment using scales and questionnaires. For the patients, the following questionnaires were used as outcome measures: Parkinson's Disease Questionnaire - 39 (PDQ-39); a questionnaire on satisfaction with physiotherapy treatment; and two questionnaires to identify barriers and facilitators to participation in treatment. The caregivers were assessed using the same questionnaires on barriers and facilitators, as well as the burden questionnaires: the Parkinson's Disease Caregiver Burden Questionnaire (PDCB) and the Burden Interview Scale (Zarit). Descriptive statistics were used for the outcomes with the means and standard deviation of the instruments evaluated, and inferential statistics verified the relationship between patient satisfaction and quality of life, patient satisfaction and facilitators, as well as caregiver burden and barriers. Results and Discussion: The data showed that satisfaction with care was rated as excellent by 7 (58%) of the participants, and quality of life was considered good by the participants. No significant relationship was found between satisfaction and quality of life, nor between satisfaction and the facilitators indicated by the patients. The caregivers reported a level of burden as little or no burden on the Zarit Scale and the average PDCB score was 30.2, where the higher the score, the worse the overload (with the highest score being 100) and they identified the difficulty of getting out and about as the main barrier to participation in therapy. A strong positive correlation was found between overload and the number of barriers indicated by the caregivers, indicating that the higher the level of overload, the greater the number of barriers cited. Conclusion: Evaluating patient satisfaction with therapy and the burden on caregivers, as well as barriers and facilitators to participation, is fundamental to recognizing the needs of these groups, which provides guidance for health education, associated with psychological and physiotherapeutic assistance and the promotion of leisure activities in an appropriate manner, improving the quality of life for all those involved in PD care.