Kastrinos Amanda L, Fisher Carla L, Mullis Michaela D, Wollney Easton, Sae-Hau Maria, Weiss Elisa S, Bylund Carma L
College of Journalism and Communications, University of Florida, Gainesville, FL.
College of Journalism & Communications, UF Health Cancer Center, UF Health Center for Arts in Medicine, University of Florida, Gainesville, FL.
Palliat Support Care. 2022 Feb;20(1):22-29. doi: 10.1017/S1478951521000389.
The study examined the diagnosis experience of midlife family caregivers of a patient with a blood cancer, exploring similarities and differences between parent caregivers and adult-child caregivers.
Participants were between 30 and 65 years old and were family caregivers of a living patient with acute myeloid leukemia, acute lymphoblastic leukemia, or lymphoma. We conducted semi-structured interviews with parent caregivers (n = 20) and adult-child caregivers (n = 19) and a thematic analysis of the interview data.
Both types of caregivers report the patient experiencing (1) mis- and missed diagnosis (facing delayed diagnosis or treatment and having symptoms dismissed or overlooked) and (2) emotional distress (being in shock and survival mode, struggling with uncertainty, and confronting mortality). Adult-child caregivers also experienced relational shifts in assuming control of their parent's care, sometimes despite geographic distance, and struggled to distribute the care burden among family members.
Differences between the caregivers' experiences emerged based on the relational role and the patient's place in the lifespan. Findings can be used to inform the development of support resources to address the needs of each group.
本研究考察了血癌患者中年家庭照料者的诊断经历，探讨了父母照料者与成年子女照料者之间的异同。
参与者年龄在30至65岁之间，是急性髓系白血病、急性淋巴细胞白血病或淋巴瘤在世患者的家庭照料者。我们对父母照料者（n = 20）和成年子女照料者（n = 19）进行了半结构化访谈，并对访谈数据进行了主题分析。
两种类型的照料者都报告患者经历了（1）误诊和漏诊（面临诊断或治疗延迟，症状被忽视或忽略）以及（2）情绪困扰（处于震惊和求生模式，与不确定性作斗争，直面死亡）。成年子女照料者在承担对父母护理的控制权时也经历了关系转变，有时尽管存在地理距离，并且难以在家庭成员之间分配护理负担。
照料者经历的差异基于关系角色和患者在生命历程中的位置而显现。研究结果可用于为开发支持资源提供信息，以满足每个群体的需求。
