青少年和青年血液恶性肿瘤患者的家庭弹性:患者和家庭照顾者的定性研究。

IF 3.5 2区 医学 Q2 ONCOLOGY
Yiwen Zhang, Li Wang, Rui Cao, Lu Chen, Hongyan Yuan, Ruiye Li, Xiuping Jiang, Yanmei Cheng, Huijing Zou, Bing Xiang Yang, Qian Liu
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引用次数: 0

摘要

目的:家庭韧性在应对癌症中起着至关重要的作用。然而,很少有研究探讨患有血液恶性肿瘤的青少年和年轻人(AYAs)及其家庭如何适应癌症,特别是在这个关键的发育阶段。目的:本研究旨在探讨血液病患者及其家庭如何经历家庭弹性的动态过程。方法:采用描述现象学方法,对来自26个家庭的40名参与者进行半结构化访谈,其中包括19名患有血液系统恶性肿瘤的AYAs和21名家庭照顾者。数据于2023年4月至2025年3月在中国中部的两家综合医院收集。访谈采用Colaizzi的方法进行分析。结果:出现4个主题和11个副主题。主题1:家庭面临的挑战:(a)患者面临的多重挑战,(b)家庭照顾者负担沉重,以及(c)对复发和不确定性的共同恐惧。主题2:家庭内部适应:(a)灵活的角色和责任调整,(b)通过沟通促进共同决策和自治,以及(c)情绪抑制和应对策略。主题3:外部社会支持和资源:(a)获得的社会支持,(b)社会支持系统的限制。主题4:自我超越与成长:(a)个人成长;(b)对家庭和社会的感恩;(c)保持希望和调整计划。结论:本研究表明,患有血液系统恶性肿瘤的aya患者的家庭恢复力是一个动态和周期性的过程,由不断适应不断变化的挑战而形成。虽然家庭弹性支持个人成长,但家庭仍然处于持续的压力之下。这些研究结果强调了对文化敏感和发展量身定制的干预措施的必要性,以便在整个疾病轨迹中更好地支持患者和护理人员。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Family Resilience in Adolescent and Young Adult Patients With Hematological Malignancies: A Qualitative Study of Patients and Family Caregivers.

Objective: Family resilience plays a vital role in coping with cancer. However, little research has explored how adolescents and young adults (AYAs) with hematological malignancies and their families adapt to cancer, particularly during this critical developmental stage.

Aims: This study aims to explore how AYAs with hematological malignancies and their families experience the dynamic process of family resilience.

Methods: Using a descriptive phenomenological approach, semi-structured interviews were conducted with 40 participants from 26 families, including 19 AYAs with hematological malignancies and 21 family caregivers. Data were collected between April 2023 and March 2025 at two general hospitals in central China. Interviews were analyzed using Colaizzi's method.

Results: Four themes and 11 subthemes emerged. Theme 1: challenges faced by families: (a) multiple challenges for patients, (b) intense family caregiver burden, and (c) shared fear of relapse and uncertainty. Theme 2: internal adaptation within families: (a) flexible role and responsibility adjustment, (b) fostering shared decision-making and autonomy through communication, and (c) emotional suppression and coping strategies. Theme 3: external social support and resources: (a) received social support, and (b) limitations in the social support system. Theme 4: self-transcendence and growth: (a) personal growth, (b) gratitude toward family and society, and (c) maintaining hope and adjusting plans.

Conclusions: This study reveals that family resilience among AYAs with hematological malignancies is a dynamic and cyclical process shaped by continuous adaptation to evolving challenges. While family resilience supports personal growth, families remain under ongoing stress. These findings highlight the need for culturally sensitive and developmentally tailored interventions to better support both patients and caregivers throughout the illness trajectory.

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来源期刊
Psycho‐Oncology
Psycho‐Oncology 医学-心理学
CiteScore
6.30
自引率
8.30%
发文量
220
审稿时长
3-8 weeks
期刊介绍: Psycho-Oncology is concerned with the psychological, social, behavioral, and ethical aspects of cancer. This subspeciality addresses the two major psychological dimensions of cancer: the psychological responses of patients to cancer at all stages of the disease, and that of their families and caretakers; and the psychological, behavioral and social factors that may influence the disease process. Psycho-oncology is an area of multi-disciplinary interest and has boundaries with the major specialities in oncology: the clinical disciplines (surgery, medicine, pediatrics, radiotherapy), epidemiology, immunology, endocrinology, biology, pathology, bioethics, palliative care, rehabilitation medicine, clinical trials research and decision making, as well as psychiatry and psychology. This international journal is published twelve times a year and will consider contributions to research of clinical and theoretical interest. Topics covered are wide-ranging and relate to the psychosocial aspects of cancer and AIDS-related tumors, including: epidemiology, quality of life, palliative and supportive care, psychiatry, psychology, sociology, social work, nursing and educational issues. Special reviews are offered from time to time. There is a section reviewing recently published books. A society news section is available for the dissemination of information relating to meetings, conferences and other society-related topics. Summary proceedings of important national and international symposia falling within the aims of the journal are presented.
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