Conti Alessio, Garrino Lorenza, Montanari Paola, Dimonte Valerio
a City Hospital Health and Science of the City of Turin , Turin , Italy .
b Department of Public Health and Paediatric Sciences , University of Turin , Turin , Italy , and.
Disabil Rehabil. 2016;38(2):159-67. doi: 10.3109/09638288.2015.1031287. Epub 2015 Apr 10.
Spinal cord injuries (SCI) are one of the most complex and disabling diseases, implying severe consequences on aspects of life of people affected by SCI and their caregivers. The aim of our study was to explore the situation of informal caregivers of persons with SCI when discharged home from a SCI Unit, in relation to needs, emotional experiences, difficulties and subsequent reactions to discharge.
A purposive sample of 11 caregivers were interviewed on patients' discharge home from the Spinal Injury Care Unit and at 6 months. The semi-structured interviews were analyzed using a qualitative phenomenological methodology as described by Giorgi.
Five main themes emerged from the caregivers' experiences including their implicit and explicit needs. Problems concerning communication with healthcare professionals and the need for an adequate multidisciplinary taking charge of caregivers in order to support their new role emerged within all the themes.
Results suggest that greater caregiver involvement in the rehabilitation process and their preparation for discharge are required. Communication with healthcare professionals needs to be enhanced. It would be useful to organize follow-up visits after discharge to assess intervention effectiveness.
Understanding the importance of discharge from the spinal cord unit as a meaningful step in the rehabilitation path for both patients and their informal caregivers. Orientating healthcare professionals towards a better caregiver involvement during the rehabilitation process. Promoting rehabilitation interventions addressed to the patients and their caregivers concerning supportive communication strategies as well as providing meaningful information, psychological and social support, educational intervention besides the physical aspects of care. Understanding SCI survivors caregivers' needs can assist healthcare professionals in planning and improving taking charge of this core aspect of nursing care.
脊髓损伤（SCI）是最复杂且致残的疾病之一，对脊髓损伤患者及其照料者的生活各方面都有严重影响。我们研究的目的是探讨脊髓损伤患者从脊髓损伤治疗单元出院回家后，其非正式照料者的情况，包括需求、情感体验、困难以及出院后的后续反应。
选取11名照料者作为有目的的样本，在患者从脊髓损伤护理单元出院时及出院6个月后进行访谈。采用 Giorgi 描述的定性现象学方法对半结构化访谈进行分析。
照料者的经历中出现了五个主要主题，包括他们的隐性和显性需求。所有主题中都出现了与医疗保健专业人员沟通的问题，以及需要有足够的多学科团队来照料照料者以支持他们的新角色。
结果表明，需要让照料者更多地参与康复过程并为出院做好准备。与医疗保健专业人员的沟通需要加强。出院后组织随访以评估干预效果会很有帮助。
认识到从脊髓损伤治疗单元出院作为患者及其非正式照料者康复路径中一个有意义步骤的重要性。引导医疗保健专业人员在康复过程中更好地让照料者参与进来。针对患者及其照料者推广康复干预措施，包括支持性沟通策略、提供有意义的信息、心理和社会支持、教育干预以及护理的身体方面。了解脊髓损伤幸存者照料者的需求有助于医疗保健专业人员规划和改进对这一护理核心方面的照料。
