CAREGIVING: ADVANCED-STAGE ORGAN SYSTEM FAILURE PATIENTS

护理：晚期器官系统衰竭患者

• 批准号: 6944740
• 负责人: Sandra H. Berry
• 金额: $ 10.77万
• 依托单位: RAND CORPORATION
• 依托单位国家: 美国
• 财政年份: 2004
• 资助国家: 美国
• 起止时间: 2004-09-01 至 2008-02-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6944740
• 关键词: caregivers; chronic obstructive pulmonary disease; clinical research; congestive heart failure; coping; emotional adjustment; emotions; evaluation /testing; health care quality; health care service evaluation; human subject; multiple organ failure; nursing intervention; spouses

DESCRIPTION (provided by applicant): Recent advances in medical treatment protocols have resulted in significant numbers of people into old age with eventually fatal chronic illness and progressive disability. Changes in health policy have meant that the responsibility for much of the care of these individuals has been shifted onto family members. One large and growing category of patients with advanced eventually fatal chronic illness is that of organ system failure, particularly congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD). These individuals have an erratic and uncertain disease course that is characterized by periods of relative stability punctuated by periodic episodes of acute illness, set in the context of progressive slow decline. The experience of family caregivers of individuals with advanced CHF and COPD is likely to differ significantly from that of caregivers of individuals with other types of chronic illness, such as dementia. However, current caregiving research has not focused on caregivers of individuals with advanced CHF and COPD as a discrete group with particular situational needs. The purpose of the proposed study is to explore the various aspects of caregiving for individuals with advanced chronic CHF and COPD in order to understand the impact of caregivers' experience from the caregivers' perspective. The study aims are to identify and describe: 1) the factors that influence caregiver outcomes in caregiving to individuals with advanced chronic CHF and COPD; 2) common caregiving demands related to the distinct qualities and features of the illness trajectory for advanced chronic CHF and COPD, and 3) the areas of need for intervention that will improve the caregivers' experience in caring for individuals with advanced CHF and COPD. Data will be gathered by conducting a series of focus groups with caregivers for individuals with advanced CHF and COPD. Participants will be selected to ensure diversity and will be divided into groups of spouse and non-spouse caregivers for living and deceased individuals. Data analysis will include: 1) a description caregiver perceptions of the features and qualities of the caregiving experience and 2) systematic coding to identify characteristics and trends. The results will be compared to the experience, as documented in the literature, of caregivers of individuals with other chronic illness in order to identify similarities and differences that can inform the development of caregiver interventions specific to advanced chronic CHF and COPD.

描述(由申请人提供)：医疗方案的最新进展导致相当数量的人进入老年，最终患有致命的慢性病和进行性残疾。卫生政策的变化意味着照顾这些人的大部分责任都转移到了家庭成员身上。器官系统衰竭，特别是充血性心力衰竭(CHF)和慢性阻塞性肺疾病(COPD)，是一大类患有晚期最终致命的慢性疾病的患者，而且还在不断增加。这些人的病程不稳定和不确定，其特点是相对稳定的时期，不时出现急性疾病的周期性发作，背景是渐进性缓慢下降。晚期CHF和COPD患者的家庭照顾者的经历可能与患有其他类型慢性病(如痴呆症)的患者的照顾者显著不同。然而，目前的照顾者研究并没有将晚期CHF和COPD患者的照顾者作为一个具有特殊情境需求的离散群体。 本研究的目的是探讨慢性充血性心力衰竭和慢性阻塞性肺病晚期患者护理的各个方面，以便从护理者的角度了解护理者的经历所产生的影响。这项研究的目的是确定和描述：1)影响照顾者护理晚期慢性充血性心力衰竭和慢性阻塞性肺病患者的结果的因素；2)与晚期慢性充血性心力衰竭和慢性阻塞性肺病患者的疾病轨迹的不同性质和特征相关的共同护理需求；以及3)需要干预的领域，以改善照顾者在护理晚期充血性心力衰竭和慢性阻塞性肺病患者方面的体验。将通过与晚期充血性心力衰竭和慢性阻塞性肺病患者的照顾者进行一系列焦点小组来收集数据。参与者将被挑选以确保多样性，并将被分为配偶和非配偶照顾者小组，以照顾在世和已故的个人。数据分析将包括：1)描述照顾者对照看体验的特征和质量的感知，以及2)识别特征和趋势的系统编码。这些结果将与文献中记录的其他慢性病患者的照顾者的经验进行比较，以确定相似和不同之处，从而为制定针对晚期慢性充血性心力衰竭和慢性阻塞性肺病的照顾者干预措施提供信息。