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

项目摘要 拟议的研究扩大了关于满足家庭护理需要的方法的知识体系， 提供者（FCG）从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。 对患有限制生命的疾病的人的照顾经常会导致照顾者的负担，抑郁， 应对技能和生活质量。通常，FCG面临的挑战包括： 知识和技能，有限的支持，苛刻的家庭环境，以及有限的时间。替代- 尽管FCG通常具有等于或大于患者需求的实质性个人健康需求， FCG的需求得到的关注有限。因此，至关重要的是， 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， 增加与FCG的沟通和支持。 本研究的目的是评估一种新的，护士主导的，技术增强的，以理论为基础的护理模式， 为生活在医疗服务不足的农村地区的FCG提供过渡性姑息治疗。一项随机对照 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- 加强家庭护理组关于护理准备的TPC（护理准备量表）、通信 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TPC对FCG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），以及 压力（CESD-10）;（3）检查技术增强的TPC对FCG医疗成本的影响。 一项为期8周的强化过渡期护理干预，针对FCG的TPC侧重于姑息治疗的FCG需求 照顾病人。在这项研究中，240名FCG将被随机分配到实验组或常规护理对照组 组干预措施包括住院和在家两部分。因为FCG和护理接受者 对于生活在农村地区的儿童，将通过虚拟访问的方式开展家庭部分的培训。将对结果进行评价 在基线后2周和8周（目标1和2），使用反应特征分析作为我们的主要方法 来分析这些重复测量的数据。成本的描述性和多变量调整措施， 将从社会角度分析入组后6个月（目标3）。 这项研究是：（1）与NINR的战略目标相一致，以制定和测试策略，以尽量减少物理和 对FCG健康的心理负担，特别是作为接近生命尽头的护理接受者;（2）创新， 这是因为它代表了对目前过渡性护理方法的实质性偏离，这些方法仅限于 在医院和家庭的人的互动;和（3）重要的，因为它解决了迅速在- 增加医疗服务不足的农村地区对TPC服务的需求。

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.