Treuman Katz Center for Pediatric Bioethics, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, Washington, USA.
Duke University & Health System, Durham, North Carolina, USA.
J Pain Symptom Manage. 2018 Jun;55(6):1599-1608. doi: 10.1016/j.jpainsymman.2018.02.001. Epub 2018 Feb 9.
Supporting patients' spiritual needs is central to palliative care. Adolescents and young adults (AYAs) may be developing their spiritual identities; it is unclear how to navigate conversations concerning their spiritual needs.
To 1) describe spiritual narratives among AYAs based on their self-identification as religious, spiritual, both, or neither and 2) identify language to support AYAs' spiritual needs in keeping with their self-identities.
In this mixed-methods, prospective, longitudinal cohort study, AYAs (14-25 years old) with newly diagnosed cancer self-reported their "religiousness" and "spirituality." One-on-one, semistructured interviews were conducted at three time points (within 60 days of diagnosis, six to 12 months, and 12-18 months later) and included queries about spirituality, God/prayer, meaning from illness, and evolving self-identity. Post hoc directed content analysis informed a framework for approaching religious/spiritual discussions.
Seventeen AYAs (mean age 17.1 years, SD = 2.7, 47% male) participated in 44 interviews. Of n = 16 with concurrent survey responses, five (31%) self-identified as both "religious and spiritual," five (31%) as "spiritual, not religious," one (6%) as "religious, not spiritual," and five (31%) as neither. Those who endorsed religiousness tended to cite faith as a source of strength, whereas many who declined this self-identity explicitly questioned their preexisting beliefs. Regardless of self-identified "religiousness" or "spirituality," most participants endorsed quests for meaning, purpose, and/or legacy, and all included constructs of hope in their narratives.
AYA self-identities evolve during the illness experience. When words such as "religion" and "spirituality" do not fit, explicitly exploring hopes, worries, meaning, and changing life perspectives may be a promising alternative.
支持患者的精神需求是姑息治疗的核心。青少年和年轻人（AYA）可能正在发展他们的精神身份；目前尚不清楚如何引导有关其精神需求的对话。
1）根据自我认同为宗教、精神、两者兼有或两者都没有，描述 AYA 的精神叙述；2）确定与他们的自我认同相一致的语言来支持 AYA 的精神需求。
在这项混合方法、前瞻性、纵向队列研究中，新诊断患有癌症的 AYA（14-25 岁）自我报告了他们的“宗教信仰”和“精神信仰”。在三个时间点（诊断后 60 天内、6 至 12 个月和 12-18 个月后）进行了一对一的半结构化访谈，包括对精神、上帝/祈祷、疾病带来的意义和不断发展的自我认同的查询。事后定向内容分析为处理宗教/精神讨论提供了一个框架。
17 名 AYA（平均年龄 17.1 岁，标准差=2.7，47%为男性）参加了 44 次访谈。在 n=16 名同时有调查结果的参与者中，有 5 名（31%）自我认同为“宗教和精神”，5 名（31%）为“精神，无宗教”，1 名（6%）为“宗教，无精神”，5 名（31%）为两者都不是。那些表示宗教信仰的人往往将信仰作为力量的源泉，而许多拒绝这种自我认同的人则明确质疑他们以前的信仰。无论自我认同为“宗教信仰”还是“精神信仰”，大多数参与者都支持对意义、目的和/或遗产的追求，并且他们的叙述中都包含希望的概念。
AYA 的自我认同在疾病经历中不断发展。当“宗教”和“精神”等词不适用时，明确探讨希望、担忧、意义和不断变化的生活观点可能是一种有前途的替代方法。
