12295Weill Cornell Medicine, New York, NY, USA.
44198Visiting Nurse Service of New York, New York, NY, USA.
Am J Hosp Palliat Care. 2022 Sep;39(9):1023-1028. doi: 10.1177/10499091211056323. Epub 2021 Dec 6.
: Hospice medical directors (HMDs) play an important role as part of the interdisciplinary hospice team. Family caregivers (CGs) play a critical role in caring for patients receiving home hospice care. Understanding the challenges HMDs face when working with CGs is important when addressing potential gaps in care and providing quality end of life (EoL) care for the patient/CG dyad. : To understand issues HMDs encounter when working with and caring for CGs and to determine how they manage these issues in the home hospice setting. Design: Twelve semistructured phone interviews with certified HMDs were conducted. Data were analyzed using standard qualitative methods. : Participants included certified HMDs obtained from a public website. : Participants' responses regarding the major issues HMDs faced when working with CGs were categorized into 6 themes: (1) assessing CG competency, (2) CG financial burden, (3) physical burden of caregiving, (4) managing CG expectations, (5) CGs denial of patient's terminal condition, and (6) CGs unwilling or unable to engage with providers about their needs or the patient's needs. : HMDs confirmed the important role CGs play in providing care to home hospice patients. Challenges faced by HMDs vary from assessing CG competency in providing care to the patient, dealing with the physical and financial toll that CGs face, and addressing CGs' expectations of hospice care. Future studies are needed to explore solutions to these issues to better support CGs in the home setting.
临终关怀医疗主任(HMD)作为跨学科临终关怀团队的一员,发挥着重要作用。家庭护理员(CG)在照顾接受家庭临终关怀的患者方面起着至关重要的作用。了解 HMD 在与 CG 合作时面临的挑战对于解决潜在的护理差距以及为患者/ CG 二人组提供优质的临终关怀至关重要。
了解 HMD 在与 CG 合作和照顾 CG 时遇到的问题,并确定他们如何在家庭临终关怀环境中管理这些问题。
对 12 名认证 HMD 进行了半结构化电话访谈。使用标准的定性方法分析数据。
参与者是从公共网站上获得的认证 HMD。
参与者对 HMD 在与 CG 合作时面临的主要问题的回答被分为 6 个主题:(1)评估 CG 能力,(2)CG 经济负担,(3)护理的身体负担,(4)管理 CG 期望,(5)CG 否认患者的终末期状况,以及(6)CG 不愿意或无法与提供者就其需求或患者的需求进行沟通。
HMD 证实了 CG 在为家庭临终关怀患者提供护理方面的重要作用。HMD 面临的挑战从评估 CG 在照顾患者方面的能力,到处理 CG 面临的身体和经济负担,以及解决 CG 对临终关怀的期望各不相同。需要进一步研究来探讨这些问题的解决方案,以更好地在家庭环境中支持 CG。