Juguera Rodriguez Laura, Pardo Rios Manuel, Leal Costa César, Castillo Hermoso Matilde, Perez Alonso Nuria, Diaz Agea Jose Luis
Department of Nursing, Catholic University of Murcia (UCAM), Murcia, Spain.
National Hospital for Paraplegics, Toledo, Spain.
Spinal Cord. 2018 Jun;56(6):548-559. doi: 10.1038/s41393-018-0092-0. Epub 2018 Mar 21.
Qualitative study.
To detect the major challenges and needs reported by family member caregivers of people with spinal cord injury (SCI).
Family member caregivers of people with SCI and expert professionals were evaluated. This study was conducted in Spain, and most of the participants attended the National Paraplegics Hospital of Toledo.
We performed 25 semi-structured interviews. The data were analyzed from a phenomenological perspective using the Colaizzi method.
The metamorphosis of the caregiver is a complex personal and family-related process. Analysis of the adjustment phase of the caregiving role allowed us to describe three stages, patterns, and trends. Five basic needs were identified.
People with SCI and their primary caregivers experienced changes in every sphere of their lives. Their most important needs were psychological support, social support, economic resources, information, training throughout the process of suffering, and the creation of informal groups of mutual aid.
定性研究。
检测脊髓损伤（SCI）患者的家庭成员照料者报告的主要挑战和需求。
对SCI患者的家庭成员照料者和专家进行了评估。本研究在西班牙开展，大多数参与者来自托莱多国家截瘫医院。
我们进行了25次半结构化访谈。使用柯莱齐方法从现象学角度对数据进行了分析。
照料者的转变是一个复杂的个人及与家庭相关的过程。对照料角色调整阶段的分析使我们能够描述三个阶段、模式和趋势。确定了五项基本需求。
SCI患者及其主要照料者在生活的各个方面都经历了变化。他们最重要的需求是心理支持、社会支持、经济资源、信息、在整个痛苦过程中的培训，以及创建非正式互助团体。
