Experiences of Family Members of Nursing Home Patients with Advanced Dementia

疗养院晚期痴呆症患者家属的经历

• 批准号: 8265269
• 负责人: JANE L GIVENS
• 金额: $ 12.61万
• 依托单位: HEBREW REHABILITATION CENTER FOR AGED
• 依托单位国家: 美国
• 财政年份: 2010
• 资助国家: 美国
• 起止时间: 2010-07-15 至 2014-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8265269
• 关键词: Address; Adult; Affect; Age; Aging; American; Anxiety; Attitude; Award; Bereavement Care; Biometry; Cancer Patient; Caregiver Burden; Caring; Cessation of life; Characteristics; Clinical; Communication; Communities; Complex; Counseling; Dana-Farber Cancer Institute; Data; Data Collection; Decision Making; Dementia; Development; Development Plans; Diagnostic; Disease; Distress; Doctor of Philosophy; Education; Elderly; Emotional; Environment; Equipment and supply inventories; Exposure to; Family; Family member; Feeling; Foundations; Gender; Glean; Goals; Grief reaction; Guilt; Health; Health Services Research; Health Services for the Aged; Healthcare; Holly; Impairment; Individual; Infection; Institutes; Institution; Institutionalization; International; Intervention; Interview; K-Series Research Career Programs; Knowledge; Lead; Massachusetts; Measurement; Measures; Medical; Medicine; Mental Depression; Mental Health; Mentors; Methods; Mission; National Institute on Aging; Nursing Homes; Outcome; Palliative Care; Patient Care; Patients; Personal Satisfaction; Persons; Policies; Postdoctoral Fellow; Process; Productivity; Prospective Studies; Provider; Proxy; Psyche structure; Psychometrics; Psychosocial Influences; Public Health Schools; Qualitative Methods; Qualitative Research; Reaction; Readiness; Reading; Recruitment Activity; Regrets; Research; Research Methodology; Research Personnel; Research Training; SF-12; Sampling; Schedule; Source; Staging; Stress; Testing; Time; Training; Universities; Validity and Reliability; Work; advanced dementia; base; career; career development; caregiving; cohort; community setting; decision-making capacity; emotional distress; end of life; end stage disease; experience; feeding; improved; instrument; longitudinal analysis; loved ones; medical schools; meetings; member; older patient; primary outcome; professor; programs; prospective; psychological distress; research and development; satisfaction; secondary outcome; shared decision making; skills; socioeconomics; stressor; symptom management; vigilance

The goal of the proposed career development plan is to prepare the candidate, Jane L. Givens, MD, MSCE, to become an independent investigator and leader in the field of aging. This award will provide four years of supervised geriatric health services research with the following specific objectives: 1. to conduct high quality research to address major knowledge gaps in our the current understanding of the burdens experienced by family members of with patients with advanced dementia in the nursing home (NH) setting; 2. to develop methodological expertise in longitudinal analyses, qualitative research, scale development and the application of these approaches to the conduct of palliative care and aging research; and 3. to become an independent investigator conducting clinical and policy relevant research aimed at improving the end-of-life care for older patients and their families. The candidate will achieve these goals through mentored research, coursework, seminars and directed readings. Susan L. Mitchell, MD, MPH, an international leader in palliative care and dementia research, Associate Professor of Medicine at Harvard Medical School, and Director of the Palliative Care Research Program for Older Adults at Hebrew SeniorLife Institute for Aging Research (HSL IFAR), will serve as the primary sponsor. Dr. Givens' research and career development will be supported by the rich environment of HSL IFAR, a renowned center dedicated to gerontological care and research, and the training of young investigators. Her research training will be further supported by other local and regional institutions, including the Harvard Medical School Center for Palliative Care and the Harvard School of Public Health. The overriding goal of the proposed research is to better understand the sources of burden experienced by families of nursing home (NH) residents with advanced dementia, to measure the effect of these burdens on their mental health outcomes, develop a brief instrument to measure these burdens, and to identify modifiable factors that could reduce their burden and improve their mental health outcomes. These goals will be accomplished through combined methods including secondary analyses of existing data from a large, prospective study of NH residents with advanced dementia and their family members, primary data collection from in-depth interviews of families who participated in this earlier prospective study, and the development of a burden assessment instrument that will be evaluated in a newly recruited cohort of family members of NH residents with advanced dementia. The specific aims are: 1. to describe and identify modifiable factors of resident care associated with better mental health outcomes among a prospective cohort of 323 health care proxies (HCPs) for NH residents with advanced dementia; 2. to describe HCP involvement in medical decision- making among 323 HCPs of NH residents with advanced dementia and to examine the association between decision-making and HCP mental health outcomes; 3. to conduct in-depth qualitative interviews with a selected sample of 30 HCPs of NH residents with advanced dementia to more fully understand their experiences during their loved one's illness, dying process and after death; and 4. to develop and validate a brief burden assessment instrument for HCPs of nursing home residents with advanced dementia. In addition to the proposed research plan, Dr. Givens will achieve her career goals through regularly scheduled meetings with her sponsor, Dr. Mitchell, as well as members of her advisory panel including: 1. Holly Prigerson, PhD. (Dana Farber Cancer Institute: psychosocial issues in end-of-life care, bereavement); 2. Richard Jones, ScD. (HSL IFAR: measurement and analysis of mental health outcomes, scale development); 3. Kathleen Mazor, EdD. (University of Massachusetts: qualitative methods, scale development); and 4. Michele Shaffer, PhD. (Penn State University: biostatistics). Finally, Dr. Givens will supplement her mentored research experience with formal training acquired through coursework in advanced research methods (i.e. Longitudinal analysis, qualitative interviewing, scale development) and seminars (i.e. Harvard Medical School Center for Palliative Care Program in Palliative Care Education and Practice). Implications: As one of the first detailed studies of family members of NH residents with advanced dementia, the proposed work will promote our understanding of the mental health burdens facing over 4 million US families whose loved ones are experiencing the end-stages of this disease in this setting, and will set the foundation for future research aimed at developing and evaluating an intervention to lessen that burden. Moreover, by the end of the proposed career development award period, Dr. Givens will have acquired the necessary skills, experience, and track record of academic productivity to emerge as one of few independent investigators in geriatric health services research focused at the intersection of family member mental health and end-of-life care for persons with dementia, and will be poised to further the National Institute on Aging's mission to improve the health and well-being of older Americans.

拟议的职业发展计划的目标是准备候选人Jane L. Givens，医学博士，MSCE，成为衰老领域的独立调查员和领导者。该奖项将提供四年的监督老年卫生服务研究，并具有以下具体目标：1。进行高质量的研究，以解决我们当前对疗养院高级痴呆症患者（NH）患者家庭成员经历的负担的重大知识差距； 2。在纵向分析，定性研究，规模的发展以及这些方法的应用中发展姑息治疗和衰老研究中的方法论专业知识； 3。成为一名独立研究人员，进行临床和政策相关研究，以改善老年患者及其家人的临终护理。候选人将通过指导的研究，课程，研讨会和定向阅读来实现这些目标。苏珊·L·米切尔（Susan L. Givens博士的研究和职业发展将得到HSL Ifar的丰富环境，该环境是一个致力于老年医学护理和研究的著名中心，以及对年轻研究人员的培训。她的研究培训将得到其他地方和区域机构的进一步支持，包括哈佛医学院的姑息治疗中心和哈佛公共卫生学院。 拟议的研究的重要目标是更好地了解养老院家族（NH）患有高级痴呆症的居民所经历的负担来源，以衡量这些负担对他们的心理健康状况的影响，开发出一种简短的工具来衡量这些负担，并确定可以减轻其负担和改善其心理健康成果的可修改因素。这些目标将通过合并的方法来实现，包括对具有高级痴呆症及其家人的NH居民进行的大型，前瞻性研究的二次分析，来自参与这项较早前瞻性研究的家庭的主要数据收集，以及在新招聘的NH居民的新招聘人员中评估的负担评估工具的开发，这些访谈的发展将在NH居民中进行评估。具体目的是：1。描述和确定与患有晚期痴呆症的NH居民的323个卫生保健代理人（HCP）中预期的323个卫生保健代理人（HCP）相关的居民护理的可修改因素； 2。描述HCP参与医疗决策 - 323个HCP的NH居民患有晚期痴呆症的居民，并研究决策与HCP心理健康成果之间的关联； 3。要对30个HCP的NH居民进行深入的定性访谈，以便在亲人的疾病，垂死的过程和死后更充分地了解他们的经历；和4。为患有晚期痴呆症的疗养院居民的HCP开发和验证简短的负担评估工具。 除了拟议的研究计划外，吉文斯博士还将通过定期与她的赞助商米切尔博士以及她的咨询小组成员进行定期会议来实现她的职业目标，包括：1。HollyPrigerson博士。 （Dana Farber癌症研究所：临终护理中的社会心理问题，丧亲）； 2。理查德·琼斯（Richard Jones），SCD。 （HSL IFAR：对心理健康成果的测量和分析，规模发展）； 3。凯瑟琳·马祖（Kathleen Mazor） （马萨诸塞大学：定性方法，规模发展）；和4。MicheleShaffer博士。 （宾夕法尼亚州立大学：生物统计学）。最后，Givens博士将通过高级研究方法的课程（即纵向分析，定性访谈，规模发展）和研讨会（即哈佛大学医学院的姑息治疗教育和实践中的palliatiate式护理计划中心），对她的指导研究经验进行了正式培训。 含义：作为患有晚期痴呆症的NH居民家庭成员的最早详细研究，这项拟议的工作将促进我们对超过400万美国家庭所面临的心理健康负担的理解，他们的亲人在这种情况下经历了这种疾病的终点，并将为未来的研究旨在发展和评估降低该负担。此外，到拟议的职业发展奖结束时，吉文斯博士将获得必要的技能，经验和学术生产力的记录，成为老年卫生服务研究中的少数独立研究者之一，重点是家庭成员心理健康和痴呆症患者的临终关怀和生活终止护理的交汇处，并将为较旧的国家 /地区的任务改善，以进一步改善型号的卫生师。