1 School of Nursing, University of Washington, Seattle, WA, USA.
2 College of Nursing, University of Iowa, Iowa, IA, USA.
Am J Alzheimers Dis Other Demen. 2019 Sep;34(6):399-411. doi: 10.1177/1533317519862095.
Family caregivers face ongoing, formidable stress and burden. Caregivers need sustainable support to maintain resilience. We aim to identify challenges, possible solutions that are resources for resilience, and expected consequences from the perspective of 39 family caregivers of hospice patients with dementia. The resilience framework was used to guide the coding and synthesis of the qualitative data. Identified challenges included difficulties in communication, providing care and decision-making, lack of knowledge, emotional challenges, concern about care facility selection, death with dignity, and lack of public awareness. Resilience resources for caregiving challenges were identified at the individual, community, and societal levels. Anticipated benefits of using these resources included the ability to provide better care and have a better quality of life for both patients and caregivers. The findings of this study can guide the design and implementation of supportive interventions designed for family caregivers of hospice patients with dementia to bolster available resilience resources.
家庭照顾者面临持续的、艰巨的压力和负担。照顾者需要可持续的支持来保持韧性。我们旨在从 39 名临终关怀痴呆症患者的家庭照顾者的角度确定挑战、可能的解决方案（作为韧性资源）和预期后果。使用韧性框架来指导定性数据的编码和综合。确定的挑战包括沟通困难、提供护理和决策、缺乏知识、情绪挑战、对护理机构选择的担忧、有尊严地死亡以及公众意识不足。在个人、社区和社会层面确定了照顾挑战的韧性资源。预期使用这些资源的好处包括能够为患者和照顾者提供更好的护理和更高的生活质量。本研究的结果可以指导为临终关怀痴呆症患者的家庭照顾者设计和实施支持性干预措施，以增强现有韧性资源。
