Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
Haematology Department, Karolinska University Hospital, Stockholm, Sweden.
Palliat Support Care. 2022 Aug;20(4):519-526. doi: 10.1017/S1478951521001346.
Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is a curative treatment associated with high morbidity and mortality. It is often necessary for family caregivers to become highly involved in the care, especially when patients return home after a long period of inpatient care. Family caregivers' preparedness for the tasks and demands of the caregiving role prior to allo-HSCT might help them during this distressing time. The aim of this study was to explore whether demographic factors are associated with preparedness for caregiving prior to allo-HSCT and if such preparedness for caregiving is associated with caregiver outcomes in terms of caregiver burden, anxiety/depression, competence, self-efficacy, and general health among family caregivers.
This correlational cross-sectional study included 86 family caregivers of patients to undergo allo-HSCT, who completed a self-administered questionnaire on preparedness, caregiver burden, anxiety/depression, competence, self-efficacy, and general health. Descriptive statistics and multiple regression models (linear and ordinal) were used to analyze the data.
Family caregivers with a higher education and those who were the patient's partner were significantly associated with a higher level of preparedness for caregiving, while gender and age were not significant. Higher preparedness was significantly associated with higher competence and self-efficacy and lower symptoms of depression, even after the model was adjusted for education, relationship to the patient, gender, and age but not for anxiety or caregiver burden. Higher levels of preparedness were also significantly associated with better general health.
A higher level of preparedness for caregiving prior to allo-HSCT was associated with better family caregiver outcomes. Assessing family caregivers prior to allo-HSCT to identify those with insufficient preparedness might enable the provision of individually tailored psycho-educational support to help them cope with their caregiving role and prevent potential negative consequences.
异基因造血干细胞移植（allo-HSCT）是一种有治愈可能的治疗方法，但与之相关的发病率和死亡率都很高。通常情况下，患者在经历长时间住院治疗后返回家中，家庭成员需要高度参与到护理中来。在 allo-HSCT 之前，家庭成员对护理角色的任务和需求做好准备，这可能有助于他们在这段痛苦的时期做好应对。本研究旨在探讨 allo-HSCT 前的人口统计学因素是否与护理准备相关，以及这种护理准备是否与家庭成员在照顾者负担、焦虑/抑郁、能力、自我效能和一般健康方面的结果相关。
这是一项相关性的横断面研究，共纳入 86 名即将接受 allo-HSCT 的患者的家庭成员照顾者，他们完成了一份关于护理准备、照顾者负担、焦虑/抑郁、能力、自我效能和一般健康的自我管理问卷。使用描述性统计和多元回归模型（线性和有序）来分析数据。
具有较高教育程度和与患者是伴侣关系的家庭成员照顾者与较高的护理准备水平显著相关，而性别和年龄则不显著。较高的准备水平与较高的能力和自我效能以及较低的抑郁症状显著相关，即使在调整了教育、与患者的关系、性别和年龄后，仍具有显著相关性，但对焦虑或照顾者负担则没有影响。较高的准备水平还与更好的一般健康状况显著相关。
allo-HSCT 前的护理准备水平与更好的家庭成员照顾者结果相关。在 allo-HSCT 前评估家庭成员照顾者，识别出准备不足的人，可能有助于提供个性化的心理教育支持，帮助他们应对照顾角色，并预防潜在的负面后果。
