Patient, Caregiver, and Clinician Perspectives on Core Components of Therapeutic Alliance for Adolescents and Young Adults With Advanced Cancer: A Qualitative Study.
Patient, Caregiver, and Clinician Perspectives on Core Components of Therapeutic Alliance for Adolescents and Young Adults With Advanced Cancer: A Qualitative Study.
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DOI：
10.1001/jamanetworkopen.2023.28153
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发表时间：
2023-08-01
影响因子：
13.8
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中科院分区：
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患有癌症的青少年和年轻人（AYA），他们的家人和他们的临床医生认为临终关怀治疗联盟的重要方面是什么？在这项包括80名参与者的定性研究中，采访了23名AYA、28名护理人员和29名临床医生，确定了治疗联盟的6个组成部分。这些要素包括同情心、联系感、临床医生在场、信息共享、共同目标以及以患者及其家人的需求为中心的个性化护理的重要性。这项研究的结果表明，建立治疗联盟的核心组成部分可以指导临床医生与AYA晚期癌症患者及其护理人员合作，以改善这一弱势群体的临终关怀。患者-临床医生治疗联盟是高质量癌症护理的一个重要方面。然而，尚未确定青少年和年轻人（AYAs，12-39岁）癌症治疗联合的组成部分。从所有关键利益相关者的角度确定AYA，护理人员和临床医生之间治疗联盟的组成部分和障碍。在这项定性研究中，从2018年到2021年，对患者、护理人员和临床医生进行了半结构化的深入访谈，没有额外的随访，并对所得成绩单进行了内容分析。参与者来自Dana-Farber癌症研究所、Kaiser Permanente北方加州、Kaiser Permanente南方加州和在线癌症支持社区（仙人掌癌症协会）。合格的参加者讲英语或西班牙语。符合条件的患者年龄为12至39岁，患有IV期或复发性癌症。合格的照顾者照顾患有晚期癌症或在5年内死亡的AYA。合格的临床医生定期为患有癌症的AYA提供护理。关于治疗联盟的观点。对80名参与者进行了访谈：23名患者（48%为女性; 78%为白色），28名护理人员（82%为女性; 50%为白色），29名临床医生（69%为女性; 45%为白色）。患者的平均（SD）年龄为29（7.3）岁。访谈确定了治疗联盟的6个组成部分：（1）同情心;（2）联系感;（3）临床医生在场;（4）信息共享;（5）共同目标;（6）个性化护理。虽然一些领域的治疗联盟的先前模型中的代表，一个独特的域被确定为需要个性化的方法来照顾AYA患者及其照顾者。访谈还确定了建立针对AYA人群的治疗联盟的潜在障碍，包括管理患者和护理人员之间的不协调需求以及生命结束时的沟通挑战。本研究从关系中所有关键利益相关者的角度确定了在AYA晚期癌症人群中建立治疗联盟的核心组成部分和障碍。一个新的组成部分，强调个性化的需要被确定。该模型使我们能够更深入地了解如何在AYA晚期癌症人群中建立治疗联盟，这可能会指导临床医生培训并促进改善对这一弱势人群的护理。这项定性研究评估了青少年之间的理想治疗联盟的组成部分。和年轻的成年人与晚期癌症，他们的照顾者，他们的临床医生使用深入的访谈，并确定在这个人群中建立治疗联盟的障碍。
What do adolescents and young adults (AYA) with cancer, their families, and their clinicians identify as important aspects of the therapeutic alliance in end-of-life care? In this qualitative study including 80 participants, interviews with 23 AYAs, 28 caregivers, and 29 clinicians identified 6 components of therapeutic alliance. The components were compassion, sense of connection, clinician presence, information sharing, shared goals, and the importance of individualized care centered on the needs of the patient and their family. Results of this study suggest that the core components to building therapeutic alliance may guide clinicians in their approach to partner with AYA advanced patients with cancer and their caregivers to improve end-of-life care in this vulnerable population. The patient-clinician therapeutic alliance is an important aspect of high-quality cancer care. However, components of the therapeutic alliance in adolescents and young adults (AYAs, aged 12-39 years) with cancer have not been defined. To identify components of and barriers to the therapeutic alliance between AYAs, caregivers, and clinicians from the perspective of all key stakeholders. In this qualitative study, semistructured in-depth interviews with patients, caregivers, and clinicians were conducted from 2018 to 2021 with no additional follow-up, with content analysis of resulting transcripts. Participants were recruited from Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an online cancer support community (Cactus Cancer Society). Eligible participants were English- or Spanish-speaking. Eligible patients were aged 12 to 39 years with stage IV or recurrent cancer. Eligible caregivers cared for an AYA living with advanced cancer or one who had died within 5 years. Eligible clinicians routinely provided care for AYAs with cancer. Perspectives on therapeutic alliance. Interviews were conducted with 80 participants: 23 were patients (48% were female; 78% were White), 28 were caregivers (82% were female; 50% were White), and 29 were clinicians (69% were female; 45% were White). The mean (SD) age of patients was 29 (7.3) years. Interviews identified 6 components of therapeutic alliance: (1) compassion; (2) sense of connection; (3) clinician presence; (4) information sharing; (5) shared goals; and (6) individualization of care. While some domains were represented in prior models of therapeutic alliance, a unique domain was identified related to the need for individualization of the approach to care for AYA patients and their caregivers. Interviews also identified potential barriers to building the therapeutic alliance specific to the AYA population, including managing discordant needs between patients and caregivers and communication challenges at the end of life. This study identified core components and barriers to building therapeutic alliance in the AYA advanced cancer population from the perspective of all the key stakeholders in the relationship. A novel component highlighting the need for individualization was identified. This model enables a deeper understanding of how to build therapeutic alliance in the AYA advanced cancer population, which may guide clinician training and facilitate improved care for this vulnerable population. This qualitative study assesses components of the ideal therapeutic alliance between adolescents .and young adults with advanced cancer, their caregivers, and their clinicians using in-depth interviews and identifies barriers to building therapeutic alliance in this population.