Department of Oncology, Division of Psychosocial Oncology, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
School of Kinesiology, University of the Fraser Valley, Fraser Valley, BC, Canada.
J Cancer Surviv. 2024 Feb;18(1):68-78. doi: 10.1007/s11764-023-01384-3. Epub 2023 Jun 20.
Youth diagnosed with acute lymphoblastic leukemia (ALL) and their caregiver's experience a myriad of challenges in all domains of health that extend beyond treatment. Yet, little is known about how the cancer experience, and recollections associated with the experience, impact survivorship. We explored pediatric ALL survivors' and their caregivers' autobiographical memories of the cancer experience from diagnosis onwards.
Survivors of ALL, and one of their caregivers, were recruited through a local clinic. Survivors and their caregivers completed a demographic survey and semi-structured, private, one-on-one interviews. Demographic information were analyzed using descriptive statistics. Interviews were transcribed verbatim and analyzed using reflexive thematic analysis at the level of the individual and dyad.
Insights from survivors (N = 19; M = 15.3 years) and their caregivers (n = 19; M = 45.4 years) were captured. Analyses generated two themes contingent on role (i.e., survivor or caregiver): (1) It is hard to recall my cancer experience and (2) We did as much as we could to manage our child's cancer experience and two unified themes (present in both survivors and their caregivers): (3) It took a village to get through the cancer experience and (4) The cancer diagnosis and experience has had a lasting impact.
Findings highlight the varied and long-lasting ways cancer impacts survivors of pediatric ALL and their caregivers. Survivors had difficultly remembering their experience or felt that information was withheld and were acutely aware of their caregiver's distress. Caregivers were cautious and intentionally limited the information they shared.
Survivors desired to be included within, or told about, decisions related to their healthcare and were acutely aware of their caregiver's distress. Efforts should be made to communicate with survivors (from diagnosis onward) openly and to consider strategies to minimize the short- and long-term impacts of pediatric ALL among survivors and their caregivers.
患有急性淋巴细胞白血病（ALL）的青年及其照顾者在健康的各个领域都面临着无数的挑战，这些挑战不仅限于治疗。然而，对于癌症经历以及与之相关的回忆如何影响生存者的情况，我们知之甚少。我们探讨了儿科 ALL 幸存者及其照顾者从诊断开始对癌症经历的自传体记忆。
通过当地诊所招募 ALL 幸存者及其一名照顾者。幸存者及其照顾者完成了一份人口统计调查和半结构化的、私人的、一对一的访谈。使用描述性统计方法分析人口统计学信息。访谈逐字记录，并在个人和对偶层面上使用反思性主题分析进行分析。
从幸存者（n=19；平均年龄 15.3 岁）和他们的照顾者（n=19；平均年龄 45.4 岁）那里获得了见解。分析产生了两个主题，取决于角色（即幸存者或照顾者）：（1）很难回忆起我的癌症经历，（2）我们尽最大努力管理孩子的癌症经历，以及两个统一的主题（在幸存者及其照顾者中都存在）：（3）战胜癌症经历需要一个村庄，（4）癌症诊断和经历产生了持久的影响。
研究结果突出了癌症对儿科 ALL 幸存者及其照顾者产生的各种长期影响。幸存者很难回忆起他们的经历，或者觉得信息被隐瞒了，并且非常清楚他们照顾者的痛苦。照顾者很谨慎，有意限制他们分享的信息。
幸存者希望参与或被告知与他们的医疗保健相关的决策，并且非常清楚他们照顾者的痛苦。应该努力与幸存者（从诊断开始）进行公开沟通，并考虑采取策略，尽量减少儿科 ALL 对幸存者及其照顾者的短期和长期影响。
