Hebrew SeniorLife Institute for Aging Research, Boston, MA 02131, USA.
Alzheimer Dis Assoc Disord. 2012 Jul-Sep;26(3):254-9. doi: 10.1097/WAD.0b013e31823899e4.
The sources of stress for families of nursing home (NH) residents with advanced dementia have not been well described. Semistructured interviews were conducted with 16 family members previously enrolled in the Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life study, a prospective cohort of 323 NH residents with advanced dementia and their family members. Questions were asked pertaining to the experience of having a family member in the NH, communication with health-care professionals, surrogate decision making, emotional distress, and recommendations for improvement in care. Transcripts were analyzed using the constant comparative method. The majority of the participants were women (63%), children of the resident (94%), and white (94%). The average age was 62 years. Four themes emerged: (1) inadequate resident personal care, resulting in family member vigilance and participation in care; (2) stress at the time of NH admission; (3) lack of communication with NH physicians; and (4) challenges of surrogate decision making, including the need for education to support advance care planning and end-of-life decisions. Our results support the provision of emotional support to families upon resident admission, education regarding prognosis to guide decision making, improved resident care, and greater communication with health care professionals.
养老院（NH）中患有晚期痴呆症的居民的家庭的压力源尚未得到充分描述。研究人员对先前参加过“临终前选择，态度和高级痴呆症护理策略”研究的 16 名家庭成员进行了半结构化访谈，该研究是一项针对 323 名患有晚期痴呆症的 NH 居民及其家庭成员的前瞻性队列研究。问题涉及到在 NH 中有家人的经历，与医疗保健专业人员的沟通，替代决策，情绪困扰以及改善护理的建议。使用恒定性比较方法对转录本进行了分析。大多数参与者是女性（63％），是居民的子女（94％），并且是白人（94％）。平均年龄为 62 岁。出现了四个主题：（1）居民个人护理不足，导致家庭成员警惕并参与护理；（2）NH 入院时的压力；（3）与 NH 医生缺乏沟通；（4）替代决策的挑战，包括需要教育来支持预先护理计划和临终决策。我们的研究结果支持在居民入院时向家庭提供情感支持，提供有关预后的教育以指导决策，改善居民护理以及与医疗保健专业人员进行更多的沟通。
