Pousada Thais, Groba Betania, Nieto-Riveiro Laura, Pazos Alejandro, Díez Emiliano, Pereira Javier
Universidade da Coruña (University of A Coruña), Faculty of Health Science, RNASA-IMEDIR Research Group Instituto Universitario de Integración en la Comunidad (INICO) Research Group, Universidad de Salamanca/University of Salamanca, Salamanca, Spain.
Medicine (Baltimore). 2018 Jun;97(24):e11039. doi: 10.1097/MD.0000000000011039.
The present study provides a basic outline of the care and support that family caregivers offer to people affected by neuromuscular diseases.To determine the presence of burden in caregivers of people with neuromuscular diseases who use a wheelchair and to establish whether the presence of burden is influenced by contextual factors, between them, the use of wheelchair.The applied design was cross-sectional and descriptive. The data were collected through a specific questionnaire, the Functional Independence Measure, the Matching Person and Technology form and the Zarit Burden Interview. The caregiver burden was analyzed in relation to different characteristics of the affected people, their wheelchairs, and factors related to the family caregivers themselves. The sample consisted of 41 caregivers, most of them (78.1%) being parents of the affected people.The burden was detected in 71.7% of caregivers. The level of dependence was not related to the presence of burden. Performing care work affected carers' physical health (80.5%), their mood (68.3%), and reduced their leisure time (90.2%). The type of wheelchair and the frequency of its use were not related to the burden.The results suggest that caregivers perceive burden, but its intensity is not related to the seriousness of the disease of the care receiver.
本研究概述了家庭照顾者为受神经肌肉疾病影响的人提供的护理和支持。为了确定使用轮椅的神经肌肉疾病患者的照顾者是否存在负担，并确定负担的存在是否受到背景因素的影响，其中包括轮椅的使用情况。所采用的设计是横断面描述性的。数据通过一份特定问卷、功能独立性测量、人与技术匹配表以及扎里特负担访谈收集。对照顾者负担与受影响者的不同特征、他们的轮椅以及与家庭照顾者自身相关的因素进行了分析。样本包括41名照顾者，其中大多数（78.1%）是受影响者的父母。71.7%的照顾者存在负担。依赖程度与负担的存在无关。从事护理工作影响了照顾者的身体健康（80.5%）、情绪（68.3%），并减少了他们的休闲时间（90.2%）。轮椅的类型及其使用频率与负担无关。结果表明，照顾者感受到了负担，但其强度与受照顾者疾病的严重程度无关。
