Department of Communication, Wake Forest University, Winston-Salem, NC.
Department of Social Sciences and Health Policy, Wake Forest School of Medicine, Winston-Salem, NC.
JCO Oncol Pract. 2023 Jul;19(7):509-515. doi: 10.1200/OP.22.00613. Epub 2023 Apr 14.
For adolescents and young adults (AYAs) with cancer, fertility preservation (FP) decision making is complex and distressing. Racial/ethnic minority (REM) AYAs experience disparities in FP awareness, uptake, and outcomes. A turning point (TP) is a point of reflection, change, or decisive moment(s) resulting in changes in perspectives or trajectories. To enhance understanding of AYAs' diverse experiences, this study examined alignment and/or divergence of FP decisional TPs among non-Hispanic White (NHW) AYAs and REM AYAs.
Qualitative semistructured interviews were conducted in person, by video, or phone with 36 AYAs (20 NHW and 16 REM [nine Hispanic and seven Black/multiracial Black). The constant comparative method was used to identify and analyze themes illustrating participants' conceptualization and/or experience of FP decisional TPs.
Seven thematic TPs emerged: (1) emotional reaction to discovering FP procedures exist; (2) encountering unclear or dismissive communication during initial fertility conversations with health care providers; (3) encountering direct and supportive communication during initial fertility conversations with health care providers; (4) participating in critical family conversations about pursuing FP; (5) weighing personal desire for a child against other priorities/circumstances; (6) realizing FP is not feasible, and (7) experiencing unanticipated changes in cancer diagnosis or treatment plans/procedures. TP variations include REM participants reported dismissive communication and suggested cost was prohibitive. NHW participants emphasized more forcefully that biological children may become a future priority.
Understanding how clinical communication and priorities/resources may vary for NHW and REM AYAs can inform future interventions aimed at reducing health disparities and enhancing patient-centered care.
对于患有癌症的青少年和年轻人（AYAs），生育力保存（FP）的决策非常复杂且令人痛苦。少数族裔（REM）AYAs 在 FP 意识、接受度和结果方面存在差异。转折点（TP）是一个反思、变革或决定性时刻，导致观点或轨迹发生变化。为了增强对 AYA 多样化经验的理解，本研究检查了非西班牙裔白人（NHW）AYA 和 REM AYA 之间 FP 决策 TP 的一致性和/或分歧。
对 36 名 AYA 进行了面对面、视频或电话的半结构化定性访谈（20 名 NHW 和 16 名 REM [9 名西班牙裔和 7 名黑/多种族黑人]）。采用恒比比较法，识别和分析了主题，这些主题说明了参与者对 FP 决策 TP 的概念化和/或体验。
出现了七个主题 TP：（1）发现 FP 程序存在时的情绪反应；（2）在与医疗保健提供者进行初始生育对话时遇到不明确或不屑一顾的沟通；（3）在与医疗保健提供者进行初始生育对话时遇到直接和支持性的沟通；（4）参与关于追求 FP 的重要家庭对话；（5）权衡个人对孩子的渴望与其他优先事项/情况；（6）意识到 FP 不可行，以及（7）经历癌症诊断或治疗计划/程序的意外变化。TP 的变化包括 REM 参与者报告了不屑一顾的沟通，并认为成本过高。NHW 参与者更强烈地强调，生物学上的孩子可能成为未来的优先事项。
了解 NHW 和 REM AYA 的临床沟通和优先事项/资源可能存在哪些差异，可以为未来旨在减少健康差距和增强以患者为中心的护理的干预措施提供信息。
