Dana Farber Cancer Institute, Boston, Massachusetts, USA.
Dana Farber Cancer Institute, Boston, Massachusetts, USA.
J Pain Symptom Manage. 2023 Jan;65(1):16-25. doi: 10.1016/j.jpainsymman.2022.09.012. Epub 2022 Oct 2.
Family caregivers of patients with advanced cancer are integrally involved in communications regarding prognosis and end-of-life (EOL) planning and care. Yet little research has examined caregivers' communication experiences or the impact of these experiences on patients and caregivers at EOL.
Investigate cancer caregivers' communication experiences and potential impact on patient and caregiver outcomes.
Semistructured interviews with bereaved family cancer caregivers (N=19) about their communication needs and experiences as their loved one approached EOL and died. Audiotaped interviews were transcribed and thematically analyzed for communication-related themes.
Caregivers described fulfilling many important communication roles including information gathering and sharing, advocating, and facilitating-often coordinating communication with multiple partners (e.g., patient, family, oncology team, hospital team). Caregivers reported that, among the many topics they communicated about, prognosis and EOL were the most consequential and challenging. These challenges arose for several reasons including caregivers' and patients' discordant communication needs, limited opportunity for caregivers to satisfy their personal communication needs, uncertainty regarding their communication needs and responsibilities, and feeling unacknowledged by the care team. These challenges negatively impacted caregivers' abilities to satisfy their patient-related communication responsibilities, which shaped many outcomes including end-of-life decisions, care satisfaction, and bereavement.
Caregivers often facilitate essential communication for patients with advanced cancers yet face challenges successfully fulfilling their own and patients' communication needs, particularly surrounding prognostic and end-of-life conversations. Future research and interventions should explore strategies to help caregivers navigate uncertainty, create space to ask sensitive questions, and facilitate patient-caregiver discussions about differing informational needs.
晚期癌症患者的家属护理人员全面参与有关预后和生命终末期(EOL)规划和护理的沟通。然而,几乎没有研究调查过护理人员的沟通经验,以及这些经验对 EOL 患者和护理人员的影响。
调查癌症护理人员的沟通经验及其对患者和护理人员结局的潜在影响。
对 19 名丧亲的癌症家属护理人员进行半结构式访谈,了解他们在亲人接近 EOL 并去世时的沟通需求和经验。对录音采访进行转录,并进行主题分析以确定与沟通相关的主题。
护理人员描述了履行许多重要沟通角色,包括信息收集和共享、倡导以及促进-通常协调与多个合作伙伴(例如患者、家属、肿瘤团队、医院团队)的沟通。护理人员报告说,在他们沟通的许多主题中,预后和 EOL 是最具影响力和最具挑战性的。这些挑战产生的原因有几个,包括护理人员和患者沟通需求的不一致、护理人员满足个人沟通需求的机会有限、对沟通需求和责任的不确定性,以及感觉被护理团队忽视。这些挑战对护理人员满足其与患者相关的沟通责任的能力产生了负面影响,这影响了许多结局,包括临终决策、护理满意度和丧亲之痛。
护理人员通常为晚期癌症患者提供必要的沟通,但在成功满足自己和患者的沟通需求方面面临挑战,特别是在涉及预后和生命终末期的对话方面。未来的研究和干预措施应探讨帮助护理人员应对不确定性、创造空间提出敏感问题以及促进患者-护理人员之间关于不同信息需求的讨论的策略。