Forst Deborah A, Kaslow-Zieve Emilia R, Hansen Andrea, Mesa Michelle, Landay Sophia L, Quain Kit M, Sereno Isabella, El-Jawahri Areej, Greer Joseph A, Temel Jennifer S, Jacobs Jamie M
Massachusetts General Hospital, Boston, Massachusetts, USA.
Harvard Medical School, Boston, Massachusetts, USA.
J Palliat Med. 2023 Jan;26(1):17-27. doi: 10.1089/jpm.2021.0534. Epub 2022 Jun 16.
Individuals caring for patients with malignant gliomas experience high rates of anxiety; however, an in-depth understanding of their distress and evidence-based interventions to target their needs are lacking. We conducted semistructured interviews with caregivers with elevated anxiety to characterize their drivers of anxiety, identify modifiable intervention targets, and capture their preferences for a psychosocial intervention. From 9/2017 to 3/2019, we conducted semistructured interviews with 21 caregivers of patients with malignant gliomas, at time points following the patient's diagnosis or within one to three months after the patient's death. Eligible caregivers in the United States had clinically significant anxiety as measured by a Hospital Anxiety and Depression Scale-Anxiety score >7. Three independent coders employed thematic content analysis to analyze the qualitative data with NVivo 12, achieving high intercoder agreement (Kappa = 0.98). On average, caregivers were 54.81 years old ( 10.85) with elevated anxiety ( 10.90, 3.25). We identified six themes in which caregivers described (1) coping through reassurance seeking or avoidance, (2) changes in their relationship with the patient, (3) challenges with social support, (4) vacillation between certainty and uncertainty regarding the future, (5) devaluation of self-care for the patients' needs, and (6) challenges communicating with the health care team. Caregivers were interested in an intervention soon after the patient's diagnosis, yet expressed concern about finding the time to participate. Emergent themes characterized the distress experienced by caregivers of patients with malignant gliomas and provided insight into their psychosocial intervention preferences. We identified evidence-based intervention components based on the modifiable factors arising from these themes.
照顾恶性胶质瘤患者的人焦虑率很高；然而，目前缺乏对他们痛苦的深入了解以及针对其需求的循证干预措施。我们对焦虑程度较高的照顾者进行了半结构化访谈，以描述他们焦虑的驱动因素，确定可改变的干预目标，并了解他们对心理社会干预的偏好。从2017年9月到2019年3月，我们在患者确诊后或患者死亡后的一至三个月内，对21名恶性胶质瘤患者的照顾者进行了半结构化访谈。在美国，符合条件的照顾者经医院焦虑抑郁量表-焦虑评分>7测量，存在临床上显著的焦虑。三名独立编码员采用主题内容分析法，使用NVivo 12对定性数据进行分析，编码员间一致性较高（卡帕系数=0.98）。照顾者的平均年龄为54.81岁（标准差10.85），焦虑程度较高（均值10.90，标准差3.25）。我们确定了六个主题，照顾者在这些主题中描述了：（1）通过寻求安慰或回避来应对；（2）他们与患者关系的变化；（3）社会支持方面的挑战；（4）对未来的确定性和不确定性之间的摇摆不定；（5）为满足患者需求而忽视自我护理；（6）与医疗团队沟通方面的挑战。照顾者希望在患者确诊后尽快得到干预，但表示担心没有时间参与。新出现的主题描述了恶性胶质瘤患者照顾者所经历的痛苦，并深入了解了他们对心理社会干预的偏好。我们根据这些主题中出现的可改变因素确定了循证干预的组成部分。
