Rabelais Em, Jones Nora L, Ulrich Connie M, Deatrick Janet A
University of Illinois at Chicago.
Temple University.
Oncol Nurs Forum. 2019 Mar 1;46(2):170-184. doi: 10.1188/19.ONF.170-184.
To describe how adolescent and young adult survivors and their mother-caregivers ascribe meaning to their post-brain tumor survivorship experience, with a focus on sense making and benefit findings and intersections with religious engagement.
PARTICIPANTS & SETTING: Adolescent and young adult survivors of childhood brain tumors and their families, living in their community settings.
Secondary analysis of simultaneous and separate individual, semistructured interviews of the 40 matched dyads (80 total interviews) occurred using conventional content analysis across and within dyads. Meaning is interpreted through narrative profiles of expectations for function and independence.
Participants made sense of the brain tumor diagnosis by finding benefits and nonbenefits unique to their experiences. Meaning was framed in either nonreligious or religious terms.
Acknowledging positive meaning alongside negative or neutral meaning could enhance interactions with survivors, caregivers, and their families. Exploring the meaning of their experiences may help them to reconstruct meaning and reframe post-tumor realities through being heard and validated.
描述青少年及年轻成人脑肿瘤幸存者及其母亲照顾者如何赋予其脑肿瘤后生存经历以意义,重点关注意义建构、益处发现以及与宗教参与的交叉点。
童年期脑肿瘤的青少年及年轻成人幸存者及其家庭,生活在其社区环境中。
对40对匹配的二元组(共80次访谈)进行同步和单独的个体半结构化访谈,并采用常规内容分析法在二元组之间及内部进行二次分析。通过对功能和独立性期望的叙事概况来解读意义。
参与者通过发现其经历特有的益处和非益处来理解脑肿瘤诊断。意义以非宗教或宗教的方式构建。
承认积极意义与消极或中性意义并存,可能会增强与幸存者、照顾者及其家庭的互动。探索他们经历的意义可能有助于他们通过被倾听和被认可来重构意义并重新构建肿瘤后的现实。