Technology-enhanced Transitional Palliative Care for Family Caregivers in Rural Settings

项目总结 拟议的研究扩大了关于解决家庭护理需求的方法的知识体系-- 捐赠者(FCGS)从以医院为基础的姑息治疗过渡到农村医疗服务不足地区的家庭。 照顾患有限制生命的疾病的人经常会造成照顾者的负担，抑郁，减少 应对技能和生活质量。通常，FCGS面临着诸如照顾不足等挑战 知识和技能、有限的支持、苛刻的家庭环境和有限的时间。Alt- 尽管FCGS经常有相当大的个人健康需求等于或超过患者的需求，但 FCGS的需求受到的关注有限。因此，至关重要的是要探索干预措施。 它将经过验证的战略与实施过渡性姑息治疗(TPC)的方法联系起来，以一种在- 加强对FCGS的沟通和支持。 本研究的目的是评估一种新颖的、护士主导的、技术增强的、基于理论的护理模式。 为生活在农村、医疗服务不足地区的FCGS提供过渡性姑息治疗(TPC)。一种随机对照 临床试验设计将用于解决以下具体目标：(1)评估技术的效果- FCGS关于护理准备(护理准备量表)、沟通的增强TPC 与临床医生(与医生沟通量表)和护理满意度(PACIC)；(2)评估 技术增强型TPC对FCGS患者生活质量(照顾者生活质量量表-癌症)、负担的影响 (Bakas护理结果量表-修订版)、应对技能(出院后应对困难量表)和 压力(CESD-10)；以及(3)检查针对FCGS的技术增强型TPC对医疗成本的影响。 为期8周的强化过渡期护理干预，FCGS的TPC专注于姑息性FCGS的需求 照顾病人。在这项研究中，240名FCGS将被随机分成试验组或常规护理对照组 组。干预包括医院内和家庭内两部分。因为FCGS和护理受助人 由于生活在农村环境中，居家部分将通过虚拟访问进行。将对结果进行评估 从基线开始的2周和8周(目标1和2)，使用响应特征分析作为我们的主要方法 对这些重复测量数据进行分析。描述性和多变量调整的成本衡量标准 将从社会角度分析注册后6个月的情况(目标3)。 这项研究是：(1)与NINR的战略目标保持一致，以开发和测试策略，以最大限度地减少物理和 对FCGS健康的心理负担，特别是在照顾者生命接近尾声时；(2) 因为它实质上背离了目前仅限于 医院和家庭中的面对面互动；以及(3)意义重大，因为它解决了 对医疗服务不足的农村地区的TPC服务的需求不断增加。

PROJECT SUMMARY The proposed study expands the body of knowledge regarding methods to address the needs of family care- givers (FCGs) transitioning from hospital-based palliative care to homes in rural, medically-underserved areas. Caregiving for individuals with life-limiting illnesses frequently causes caregiver burden, depression, decreased coping skills and quality of life. Often, FCGs are confronted by challenges such as inadequate caregiving knowledge and skills, limited support, demanding family circumstances, and limited time for themselves. Alt- hough FCGs often have substantial personal health needs equal to or greater than the patients' needs, the FCGs' needs have received limited attention. It is, therefore, critically important that interventions be explored that link proven strategies in an approach to implementing transitional palliative care (TPC) in a way that in- creases communication and support to FCGs. The purpose of this study is to evaluate a novel, nurse-led, technology-enhanced, theory-based care model of transitional palliative care (TPC) for FCGs living in rural, medically underserved areas. A randomized controlled clinical trial design will be used to address the following specific aims: (1) Evaluate the effect of technology- enhanced TPC for FCGs on caregiving preparedness (Preparedness for Caregiving Scale), communication with clinicians (Communication with Physicians Scale), and satisfaction with care (PACIC); (2) Evaluate the effect of technology-enhanced TPC for FCGs' quality of life (Caregiver Quality of Life Scale-Cancer), burden (Bakas Caregiving Outcomes Scale-Revised), coping skills (Post-Discharge Coping Difficulty Scale), and de- pression (CESD-10); and (3) Examine the effect of technology-enhanced TPC for FCGs on healthcare costs. An intensive 8 week transitional care intervention, TPC for FCGs focuses on the needs of FCGs of palliative care patients. In this study, 240 FCGs will be randomized to either the experimental or usual care control groups. The intervention includes in-hospital and in-home components. Because the FCGs and care recipients live in rural settings, the in-home component will be conducted using virtual visits. Outcomes will be evaluated at 2 weeks and 8 weeks from baseline (Aims 1 & 2) using a response-feature analysis as our primary approach to analyzing these repeated measures data. Both descriptive and multivariable-adjusted measures of costs for 6 months post-enrollment from a societal perspective will be analyzed (Aim 3). This study, is: (1) aligned with NINR's strategic goal to develop and test strategies to minimize the physical and psychological burdens on FCGs' health, particularly as the care recipients near the end of their life; (2) innova- tive because it represents a substantive departure from current transitional care approaches that are limited to in-person interactions in both the hospital and home; and (3) significant because it addresses the rapidly in- creasing need for TPC services to medically underserved rural areas.