Caregiver Support in the Context of Multiple Chronic Conditions (Caregiver-Support)

摘要 支持患有多种慢性病的成年人的照顾者，以减轻负担，提高复原力， 提高生活质量（QOL）是国家卫生保健优先事项。然而，根据联合国的优先事项调整这种支持， 由于经过测试的干预措施数量有限，以及污名化和性别歧视， 约束的考虑因素，强调未来研究的必要性。阿布希尔博士将进行测试 与晚期心力衰竭患者的家庭照顾者进行量身定制干预的可行性， 另一种慢性病通常HF患者由于多种慢性疾病而具有复杂的健康需求 有功能限制，需要家庭照顾者（家庭和无报酬的照顾者）， 增加护理任务和护理量会增加护理者角色紧张恶化的风险， ，并使其受损。这项研究将基于从社会到细胞框架的原则， 它假定生理，个人，家庭和社会层面的因素影响弹性， 积极适应压力。我们将使用共同设计，将最终用户作为关键 利益相关者，包括患者和护理人员，参与设计，开发，执行和评估 该项目旨在制定和试点测试一种理论上的、以个人和家庭为中心的干预措施。使用co- 设计方法，Abshire博士和合作研究者将参与经历多种慢性 条件，包括心力衰竭，照顾者，医疗保健提供者和专家干预， 制定针对儿童的干预措施，重点是建立服从性。与一个专业的 心脏病门诊，约翰霍普金斯心力衰竭桥诊所，我们将开发一个家庭为基础的 干预措施，以帮助照顾者阐明生活中的目的声明，设定目标，以解决疲劳， 照顾者负担，提供工具性支持（如福利检查）和社会支持，以提高自我， 从基线到16周随访报告的QOL（情感幸福感和身体健康）。试点研究将 是一项单盲、两组、随机试验（N = 45），将测试可行性并评估初始效果 在一个种族多样化、低收入的城市社区中，干预的规模。她还将测试自己是否- 报告的疲劳和护理者负担与较高的炎性细胞因子（IL-6和IL-10）相关， 在汗液斑中检测到，控制协变量。Abshire博士使用了一个时期的时间作为一个时期， which哪一个to leverage杠杆resilience弹性.拟议的研究在几个关键方面具有创新性： MCC和HF患者讨论他们的生活目的，设定自己的个性化目标，同时提供 工具性和社会性支持是一种以个人和家庭为中心的提高生活质量的方法。最后我们 正在使用一种创新的共同设计方法，该方法将解决有效干预措施方面的差距，以满足需求 通过理论驱动的研究，对多病、弱势群体的照顾者进行研究。这是直接对准 NINR的使命是制定干预措施，通过提供护理人员支持来减轻疾病负担。

Abstract Supporting caregivers of adults with multiple chronic conditions to reduce burden, increase resilience and improve quality of life (QOL) is a national healthcare priority. Yet tailoring this support to the priorities of the caregiver is challenging due to limited number of tested interventions as well as the stigmatizing and gender- bound considerations in caregiving, underscoring the need for future research. Dr. Abshire will test the feasibility of a tailored intervention with family caregivers of people with advanced heart failure and at least one other chronic condition. Often HF patients with complex health needs due to multiple chronic conditions have functional limitations requiring a family caregiver (family and unpaid caregivers) and as the difficulty of caregiving tasks and amount of care increases there is an increased risk for worsening caregiver role strain, burden, and impairment of QOL. This study will be based on principles from the Society to Cells Framework, which posits that physiological, individual, family and societal level factors influence resilience, the process of positive adaptation when facing stressors. We will use co-design, which incorporates end users as key stakeholders, including patients and caregivers, in the design, development, execution and evaluation of a project to develop and pilot test a theoretically-derived, person- and family-centered intervention. Using co- design methodology, Dr. Abshire and co-investigators will engage persons experiencing multiple chronic conditions including heart failure, caregivers, healthcare providers and expert interventionists in the development of a caregiver-specific intervention focusing on resilience-building. Partnered with a specialty outpatient cardiology clinic, the Johns Hopkins Heart Failure Bridge Clinic, we will develop a home-based intervention to help caregivers articulate statements of purpose in life, set goals to address fatigue and caregiver burden, provide instrumental support (e.g. benefits check up) and social support to improve self- reported QOL (affective well-being and physical health) from baseline to 16 week follow-up. The pilot study will be a single-masked, two-group, randomized trial (N=45) and will test the feasibility and gauge an initial effect size of the intervention in a racially diverse, low-income urban community. She will also test whether self- reported fatigue and caregiver burden are associated with higher inflammatory cytokines (Il-6 and IL-10) as detected in sweat patches, controlling for covariates. Dr. Abshire uses the period of caregiving as a period in which to leverage resilience. The proposed study is innovative in several critical ways: Supporting caregivers of patients with MCC and HF to discuss their purpose in life, set their own individualized goals, while providing instrumental and social support is both a person- and family-centered approach to improve QOL. Finally, we are using an innovative co-design method which will address a gap in effective interventions to meet the needs of caregivers of a multimorbid, vulnerable population through theory-driven research. This is directly aligned with the NINR mission to develop interventions that reduce illness burden by providing caregiver support.