Sustaining palliative care to drug users with HIV/AIDS & health disparities

描述（由申请人提供）：随着艾滋病毒生存和残疾的增加，非正式（无偿）护理人员在艾滋病毒/艾滋病患者（PLHAs）的福祉中发挥着越来越大的作用，特别是当他们进入生命末期（EOL）时。姑息治疗（PC）计划的主要目标是提高患者及其家属的生活质量（QOL），优化功能，促进患者-家属对EOL治疗的决策和与医疗提供者的讨论。非洲裔美国人（AA）注射吸毒者（IDUs）在艾滋病毒流行率和结果方面存在差异，部分原因是他们的医疗保健和治疗依从性不佳，并且很少获得PC。PI的研究表明，大多数AA IDU plha都有照顾者，他们在他们的医疗保健、治疗依从性和心理健康方面发挥着关键作用。我们的初步研究结果还表明，AA IDU PLHAs的护理人员有倦怠和早期停止护理的主要风险。需要研究如何促进AA IDU感染者的HIV护理，促进与护理人员和提供者讨论和相互理解他们的治疗目标和EOL护理偏好，以确保他们及其护理人员的生活质量。本研究以社会生态、网路资源架构为基础，以研究团队的HIV照护研究计划、小儿HIV PC诊所计划、以及患者与提供者在EOL议题上的沟通研究为基础，提出混合方法的纵向研究。照护工作可能压力很大，耗费财力和社会资源，这可能导致照护者倦怠（例如，角色超负荷、被囚禁）和停止照护。停止照护的主要风险包括接受照护者的晚期疾病、密集（个人）照护需求、药物滥用和其他问题行为，以及照护者缺乏社会支持。我们最近的Beacon研究的初步结果表明，护理人员高度参与AA、IDU和PLHA护理对象的医疗依从性，并且缺乏社会支持。79%的受助者报告了疼痛，这与非法药物使用有关，对他们的护理关系和生活质量构成了潜在威胁。拟议的研究将我们的护理研究计划扩展到PC， EOL和护理人员弹性的新领域。该研究将包括对Beacon样本（长达六年）和新招募人员（n=400对，一半来自Beacon）的四次长期随访评估；以及从照顾者和接受者的角度探索个人电脑、EOL和照顾弹性的定性部分。本研究将解决先前护理和个人电脑研究的一些方法和理论局限性。研究结果将为团队后续干预措施的发展提供信息，以促进AA IDU PLHA护理人员和接受者的持续护理和生活质量，可能会在双方、支持网络或医疗提供者层面进行干预。

DESCRIPTION (provided by applicant): With increasing HIV survival and disability, informal (unpaid) caregivers play a growing role in the well-being of persons living with HIV/AIDS (PLHAs), especially as they enter end of life (EOL). Major goals of palliative care (PC) programs are to enhance the quality of life (QOL) of patients and their families, optimize function, and facilitate patient-family decision making on EOL treatment and discussion with medical providers. African American (AA) injection drug users (IDUs) experience disparities in prevalence and outcomes of HIV, in part due to their suboptimal healthcare and treatment adherence, and have low access to PC. The PI's research indicates most AA IDU PLHAs have caregivers and that they play a key role in their healthcare, treatment adherence and mental health. Our preliminary findings also suggest AA IDU PLHAs' caregivers have major risks for burnout and early cessation of care. Research is needed to understand ways to promote AA IDU PLHAs' HIV care and facilitate discussion and mutual understanding of their treatment goals and EOL care preferences with caregivers and providers to ensure their and their caregivers' QOL. The proposed mixed methods, longitudinal study is based on a social ecological, network resource framework and builds on the study team's novel HIV caregiving research program, pediatric HIV PC clinic program, and research on patient- provider communication on EOL issues. Caregiving can be highly stressful, and costly of financial and social resources, which can lead to caregiver burnout (e.g., role overload, captivity) and cessation of care. Major risks of care cessation include recipients' late stage illness, intensive (personal) care needs, substance abuse and other problem behaviors, and caregivers' lack of social support. Preliminary findings from our recent Beacon study suggest caregivers of were highly involved in AA IDU PLHA care recipients' medical adherence and had a dearth of social support. And 79% of recipients reported pain, which was associated with illicit drug use, posing a potential threat to their caregiving relationship and QOL. The proposed study expands our caregiving research program into new areas of PC, EOL, and caregiver resiliencies. The study will comprise four long- term follow-up assessment of the Beacon sample (up to six years) and new recruits (n=400 dyads, half from Beacon); and a qualitative component exploring PC, EOL, and caregiving resiliencies from caregiver and recipient perspectives. The study will address some of the methodological and theoretical limitations of prior caregiving and PC research. The findings will inform the team's later development of interventions to promote AA IDU PLHA caregivers' and recipients' sustained care and QOL by potentially intervening at the dyad, support network or medical provider level.