Patients' and families' home care service priorities

患者和家属的家庭护理服务优先事项

• 批准号: 6918391
• 负责人: DAVID J CASARETT
• 金额: $ 40.36万
• 依托单位: UNIVERSITY OF PENNSYLVANIA
• 依托单位国家: 美国
• 财政年份: 2005
• 资助国家: 美国
• 起止时间: 2005-08-01 至 2008-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6918391
• 关键词: behavioral /social science research tag; caregivers; clinical research; combination cancer therapy; family; health care model; health care service planning; health services research tag; home health care; hospices; human subject; interview; neoplasm /cancer classification /staging; neoplasm /cancer palliative treatment; neoplasm /cancer therapy; preference; psychological aspect of cancer; psychometrics; quality of life; terminal patient care

DESCRIPTION (provided by applicant): Patients with cancer and their families have substantial needs for care, including needs for symptom control, spiritual support, emotional and psychological support, and practical assistance. For patients with advanced cancer whose goals focus exclusively on comfort care, hospice offers a widely utilized mechanism for meeting these needs. However, hospice is not an option for patients as long as they continue to pursue disease-modifying cancer treatment. Instead, patients with cancer typically enroll in hospice very late in the course of illness. These patients, and their families, benefit from hospice services only briefly. For this reason, there is rapidly growing interest in supportive home care programs as an "upstream" alternative to hospice for patients who are still seeking disease-modifying treatment. These programs are designed to meet the supportive care needs of patients with cancer and their families before they are eligible to enroll in hospice. These programs offer a promising mechanism for providing supportive care earlier in the illness course. However, it is not known what program services are most important to patients and their families. Nor is it known whether subgroups of patients and families share distinct needs for care and preferences for treatment and may thus prefer unique combinations of services. It is essential to define patients' and families' preferences about supportive home care services in order to design programs that optimally meet patients' and families' needs. The goal of this Project is to define the supportive home care services that are most valuable to patients with cancer and their families and to define subgroups of patients and families with unique priorities.

描述（由申请人提供）：癌症患者及其家人有大量的护理需求，包括症状控制，精神支持，情感和心理支持以及实际援助的需求。对于晚期癌症患者，其目标完全集中在舒适护理，临终关怀提供了一个广泛使用的机制，以满足这些需求。然而，临终关怀不是一个选择的病人，只要他们继续追求疾病修饰癌症治疗。相反，癌症患者通常在疾病过程中很晚才参加临终关怀。这些病人和他们的家人只能短暂地从临终关怀服务中受益。出于这个原因，人们对支持性家庭护理计划的兴趣迅速增长，作为仍在寻求疾病改善治疗的患者的临终关怀的“上游”替代方案。这些计划旨在满足癌症患者及其家人在有资格参加临终关怀之前的支持性护理需求。这些方案提供了一个有希望的机制，在疾病过程的早期提供支持性护理。然而，目前尚不清楚哪些项目服务对患者及其家属最重要。也不知道患者和家庭的亚组是否有不同的护理需求和治疗偏好，因此可能更喜欢独特的服务组合。确定患者和家庭对支持性家庭护理服务的偏好，以设计最佳满足患者和家庭需求的方案至关重要。本项目的目标是确定对癌症患者及其家庭最有价值的支持性家庭护理服务，并确定具有独特优先事项的患者和家庭亚组。