Bridging the Gap: Meeting the discharge needs of stroke patient/caregiver dyads

描述(申请人提供)：中风是美国残疾的主要原因。超过450万中风幸存者生活在社区，功能受限，需要家庭照顾者的帮助。中风发生突然，不可预测，会扰乱生活，没有足够的时间让患者和家人为众多的中风后护理需求做好准备。中风患者通常在住院康复中从接受多个提供者的护理过渡到依赖一个人(通常是配偶照顾者)，而这个人没有准备好应对压倒性的需求和在家进行适当护理所需的持续警惕。配偶照顾者比其他家庭成员更有可能遭受照看的不良影响。他们描述了被孤立、被遗弃和孤独的感觉，随之而来的往往是可预见的抑郁轨迹和身体健康恶化的螺旋式下降。研究未能解决危机驱动的方法来决定护理资源和出院目的地，最终导致患者需求和配偶照顾者提供出院后护理的能力之间严重不匹配。需要卒中出院干预模型来充分预测和解决与卒中患者及其照顾者相关的出院后担忧。这些模式应基于对患者需求和照顾者能力之间匹配的全面评估，并在康复出院前实施。这种对卒中二联体的综合评估是开发和测试干预模型的必要前提。几个国家的中风护理临床实践指南已经确定了在住院康复轨迹的早期对患者和护理者进行评估的重要性，以确定患者的需求和护理者的担忧和能力。然而，还没有开发出工具来填补这一空白。这项混合方法研究的目的是开发和试点全面的二元风险评估概况，以评估患者的需求和护理人员的担忧和能力，并确定在临床环境中实施这种风险评估的可行性。实施风险评估概况是开发卒中出院干预模型的关键第一步，并帮助患者、配偶照顾者和康复团队成员在他们从住院康复过渡回家时更好地了解他们的需求。 公共卫生相关性：该研究项目的长期目标是开发一种卒中后出院计划干预措施，以改善卒中幸存者和配偶照顾者的健康和生活。在这项研究中试用的DYAD风险评估概况是该计划的第一步，将在未来的研究中用于为中风患者及其配偶照顾者从住院康复过渡回家的研究性干预的发展提供信息。这项建议涉及NINR战略计划中与提高生活质量和照料相关的重点领域。

DESCRIPTION (provided by applicant): Stroke is the leading cause of disability in the U.S. More than 4.5 million stroke survivors live in the community with functional limitations requiring the assistance of family caregivers. Stroke occurs suddenly, is unpredictable, life-disrupting, and does not allow patients and families sufficient time to prepare for the numerous post-stroke caregiving needs. Stroke patients typically transition from being cared for by multiple providers in inpatient rehabilitation to relying on one person (most often a spousal caregiver) who is unprepared to handle the overwhelming demands and constant vigilance required for adequate care at home. Spousal caregivers are more likely to suffer from the ill-effects of caregiving than other family members. They describe feeling isolated, abandoned, and alone, and what frequently follows is a predictable trajectory of depression and a downward spiral of deteriorating physical health. Research has failed to address the crisis-driven approach to decisions about caregiving resources and discharge destination, culminating in serious mismatches between patient needs and spousal caregiver capacity to provide post-discharge care. Stroke discharge intervention models are needed to adequately anticipate and address post-discharge concerns related to stroke patients and their caregivers. These models should be based on a comprehensive assessment of the match between patient need and caregiver capacity and implemented prior to discharge from rehabilitation. This combined assessment of the stroke dyad is a necessary antecedent to intervention model development and testing. Stroke care clinical practice guidelines from several countries have identified the importance of conducting assessments of patients and caregivers early in the inpatient rehabilitation trajectory to determine patient needs and caregiver concerns and capacity however, no tools have been developed to fill this gap. The purpose of this mixed methods study is to develop and pilot a comprehensive dyad risk assessment profile for evaluating patient needs and caregiver concerns and capacity, and to determine the feasibility of implementing this risk assessment in a clinical setting. Implementing a risk assessment profile is the critical first step in developing stroke discharge intervention models and helping patients, spousal caregivers, and members of the rehabilitation team acquire a better understanding of the dyads' needs as they transition home from inpatient rehabilitation. PUBLIC HEALTH RELEVANCE: The long-term objective of this program of research is to develop a post-stroke discharge planning intervention that improves the health and lives of stroke survivors and spousal caregivers. The dyad risk assessment profile that is piloted in this study is the first step in this program and will be used in a future study to inform the development of a research-based intervention for stroke patients and their spousal caregivers as they transition home from inpatient rehabilitation. This proposal addresses the NINR strategic plan areas of emphasis related to improving quality of life and caregiving.