Phongtankuel Veerawat, Reid M C, Czaja Sara J, Teresi Jeanne, Eimicke Joseph P, Kong Jian X, Prigerson Holly, Shalev Ariel, Dignam Ritchell, Baughn Rosemary, Adelman Ronald D
Division of Geriatrics and Palliative Medicine, Weill Cornell Medicine, New York, New York, USA.
Research Division, Hebrew Home at Riverdale, New York, New York, USA.
Palliat Med Rep. 2020 Jul 7;1(1):111-118. doi: 10.1089/pmr.2020.0055. eCollection 2020.
A majority of hospice care is delivered at home, with significant caregiver involvement. Identifying factors associated with caregiver-reported quality measures could help improve hospice care in the United States. To identify correlates of caregiver-reported quality measures: burden, satisfaction, and quality of end-of-life (EoL) care in home hospice care. A cross-sectional study was conducted from April 2017 through February 2018. A nonprofit, urban hospice organization. We recruited caregivers whose patients were discharged from home hospice care. Eligible caregiver participants had to be 18 years or older, English-speaking, and listed as a primary caregiver at the time the patient was admitted to hospice. The (1) short version of the Burden Scale for Family Caregivers; (2) Family Satisfaction with Care; and (3) Caregiver Evaluation of the Quality of End-Of-Life Care. Caregivers ( = 391) had a mean age of 59 years and most were female ( = 297, 76.0%), children of the patient ( = 233, 59.7%), and non-Hispanic White ( = 180, 46.0%). The mean age of home hospice patients was 83 years; a majority had a non-cancer diagnosis ( = 235, 60.1%), were female ( = 250, 63.9%), and were non-Hispanic White ( = 210, 53.7%). Higher symptom scores were significantly associated with greater caregiver burden and lower satisfaction with care; but not lower quality of EoL care. Caregivers who were less comfortable managing patient symptoms during the last week on hospice had higher caregiver burden, lower caregiver satisfaction, and lower ratings of quality of EoL care. Potentially modifiable symptom-related variables were correlated with caregiver-reported quality measures. Our study reinforces the important relationship between the perceived suffering/symptoms of patients and caregivers' hospice experiences.
大多数临终关怀服务是在家中提供的,需要照护者大量参与。确定与照护者报告的质量指标相关的因素有助于改善美国的临终关怀服务。为了确定与照护者报告的质量指标(负担、满意度和临终关怀质量)相关的因素,我们于2017年4月至2018年2月开展了一项横断面研究。研究对象为一家非营利性城市临终关怀组织。我们招募了患者已从家庭临终关怀服务出院的照护者。符合条件的照护者参与者必须年满18岁,会说英语,并且在患者入住临终关怀机构时被列为主要照护者。使用了以下量表:(1)家庭照护者负担量表简版;(2)家庭对护理的满意度;(3)照护者对临终关怀质量的评估。391名照护者的平均年龄为59岁,大多数为女性(297名,76.0%),是患者的子女(233名,59.7%),且为非西班牙裔白人(180名,46.0%)。家庭临终关怀患者的平均年龄为83岁;大多数患者的诊断不是癌症(235名,60.1%),为女性(250名,63.9%),且为非西班牙裔白人(210名,53.7%)。较高的症状评分与照护者更大的负担和更低的护理满意度显著相关;但与较低的临终关怀质量无关。在临终关怀的最后一周,对管理患者症状不太自信的照护者负担更高、满意度更低,对临终关怀质量的评分也更低。潜在可改变的与症状相关的变量与照护者报告的质量指标相关。我们的研究强化了患者感知到的痛苦/症状与照护者临终关怀体验之间的重要关系。