Efeitos da telerreabilitação em cuidadores de pacientes com disfunções neurológicas

Abstract

Introduction: The caregiver is a key player in supporting the person with a chronic illness during their routine activities and medical programming. Informal caregivers of people with neurological diseases, especially neurodegenerative ones, such as Amyotrophic Lateral Sclerosis (ALS) suffer from intense waves of stress, overload, reduced self-care, and consequent worsening of quality of life. The practice of physical activity has beneficial effects for caregivers, however, they do not seem to prioritize their own health, but the person being cared for. After the COVID-19 pandemic and the required social distancing, telemarketing became stronger as an option for maintaining treatments and helping with care. Currently, telerehabilitation is a great alternative for people with difficulties in time management, however, there is no consensus on the best intervention model for caregivers, whether synchronous or asynchronous. Objectives: Study objective 1: To assess the impact of telerehabilitation on overload, stress, pain, and quality of life of caregivers of people with neurological disorders; Aim of study 2: To analyze and compare the results of applying for an educational selfcare program via telemarketing, synchronous and asynchronous, on the physical and mental health of caregivers of people with ALS. Methods: Study 1 methods: This is a systematic review, carried out in the following databases: MEDLINE Ovid, Embase; Cochrane Central Register of Controlled Trials (CENTRAL); Pedro; and PsycINFO Ovid. Clinical trials that performed telerehabilitation, assessing burden, stress, pain and/or quality of life of caregivers of people with neurological diseases, without the restriction of language or year of publication, were included. Four independent reviewers selected eligible studies. The quality of evidence and the risk of bias were assessed according to the tools recommended by the Cochrane Collaboration. Study 2: It consists of a pilot study of a controlled, randomized, blinded clinical trial. 17 participants were recruited, and randomized to the experimental group (EG=9) and control group (GC=8). The GE received an informative booklet and participated in a telerehabilitation program for 6 weeks, where topics related to physical and mental well-being were discussed. The meetings took place via the online audio and video platform and had a neuropsychologist, nutritionist, and physiotherapist, synchronously. The CG received an informative booklet and guidance on the importance of self-care and physical activity. During the six weeks, the CG had 2 follow-up moments, via telephone contact, to resolve doubts about the information contained in the booklet. Outcome measures: caregiver burden (Zarit Scale), quality of life (World Health Organization Quality of Life-100), pain (McGill Pain Scale), stress (Perceived Stress Scale), and depression (Perceived Stress Inventory). Beck Depression) were assessed before, after the interventions, and at the 30-day follow-up. Results: Result of study 1: In the systematic review, 80,043 articles were found through the search key, including 02 studies. One of them dealt with caregivers of people with stroke and found that the main results, favoring the EG, were reduced patient anxiety and caregiver depression. The other study was formed by caregivers (wives) of individuals with Alzheimer’s and found improvement in the self-efficacy of exercise, reported by caregivers. Study 2: In the pilot study, significant differences were found in the physical domain of quality of life in the experimental group and in the environment in the control group, in addition to finding an improvement in the number of pain descriptors in the experimental group, and on the pain index of both groups. There was no statistically significant difference between the groups. Conclusion: Conclusion of study 1: Due to the significant scarcity of research on telehealth in caregivers of people with neurological diseases, this review was inconclusive regarding the effectiveness of telerehabilitation in this population. Study 2: The self-care program improved the quality of life of caregivers through telerehabilitation, demonstrating that both the synchronous and asynchronous forms can be used.