Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Pediatr Blood Cancer. 2023 Jan;70(1):e30035. doi: 10.1002/pbc.30035. Epub 2022 Oct 29.
Adolescents and young adults (AYAs) with advanced cancer identify normalcy as an important component of quality end-of-life care. We sought to define domains of normalcy and identify ways in which clinicians facilitate or hinder normalcy during advanced cancer care.
This was a secondary analysis of a qualitative study that aimed to identify priority domains for end-of-life care. Content analysis of semi-structured interviews among AYAs aged 12-39 years with advanced cancer, caregivers, and clinicians was used to evaluate transcripts. Coded excerpts were reviewed to identify themes related to normalcy.
Participants included 23 AYAs with advanced cancer, 28 caregivers, and 29 clinicians. Participants identified five domains of normalcy including relationships, activities, career/school, milestones, and appearance. AYAs and caregivers identified that clinicians facilitate normalcy through exploration of these domains with AYAs, allowing flexibility in care plans, identification of short-term and long-term goals across normalcy domains, and recognizing losses of normalcy that occur during cancer care.
AYAs with cancer experience multiple threats to normalcy during advanced cancer care. Clinicians can attend to normalcy and improve AYA quality of life by acknowledging these losses through ongoing discussions on how best to support domains of normalcy and by reinforcing AYA identities beyond a cancer diagnosis.
患有晚期癌症的青少年和年轻人 (AYAs) 将常态视为生命末期护理的重要组成部分。我们旨在确定常态的领域，并确定临床医生在晚期癌症护理期间促进或阻碍常态的方式。
这是一项旨在确定生命末期护理优先领域的定性研究的二次分析。对 12-39 岁患有晚期癌症的 AYA、照顾者和临床医生进行的半结构化访谈的内容分析用于评估转录本。审查编码的摘录以确定与常态相关的主题。
参与者包括 23 名患有晚期癌症的 AYA、28 名照顾者和 29 名临床医生。参与者确定了常态的五个领域，包括人际关系、活动、职业/学校、里程碑和外貌。AYAs 和照顾者认为，临床医生通过与 AYA 探讨这些领域来促进常态，允许在护理计划中灵活处理，确定常态领域的短期和长期目标，并认识到癌症治疗过程中发生的常态丧失。
患有癌症的 AYA 在晚期癌症护理期间经历了多种常态威胁。临床医生可以通过持续讨论如何最好地支持常态领域以及通过强化 AYA 身份超越癌症诊断，来关注常态并改善 AYA 的生活质量，从而承认这些损失。
