CAREGIVING: ADVANCED-STAGE ORGAN SYSTEM FAILURE PATIENTS

描述（由申请人提供）：医疗方案的最新进展导致大量人进入老年，最终患有致命的慢性疾病和进行性残疾。 卫生政策的变化意味着照顾这些人的大部分责任已转移到家庭成员身上。 晚期最终致命的慢性疾病患者的一个大的且不断增长的类别是器官系统衰竭，特别是充血性心力衰竭（CHF）和慢性阻塞性肺病（COPD）。 这些人有一个不稳定和不确定的疾病过程，其特点是相对稳定的时期，由急性疾病的周期性发作打断，在逐步缓慢下降的背景下。 晚期CHF和COPD患者的家庭照顾者的经验可能与其他类型慢性疾病（如痴呆症）患者的家庭照顾者的经验显著不同。 然而，目前的研究还没有集中在照顾者的个人与先进的CHF和COPD作为一个离散的群体与特定的情况需要。 本研究的目的是探讨晚期慢性CHF和COPD患者康复的各个方面，以便从照顾者的角度了解照顾者经验的影响。 本研究的目的是确定和描述：1）影响护理人员护理晚期慢性CHF和COPD患者结果的因素; 2）与晚期慢性CHF和COPD疾病轨迹的不同质量和特征相关的常见护理需求; 3）需要干预的领域，以改善护理人员护理晚期CHF和COPD患者的经验。 将通过与晚期CHF和COPD患者的护理人员进行一系列焦点小组来收集数据。 参加者的挑选将确保多样性，并将分为配偶和非配偶照顾者小组，照顾在世和已故的个人。 数据分析将包括：1）描述护理人员对护理体验的特征和质量的感知; 2）系统编码，以识别特征和趋势。 将结果与文献中记录的其他慢性疾病患者的护理人员的经验进行比较，以确定相似性和差异性，从而为制定针对晚期慢性CHF和COPD的护理人员干预措施提供信息。

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.