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从急性治疗到生存阶段的转变:探索中国癌症或血液疾病患儿父母的心理社会调整。

Transition from Acute Treatment to Survivorship: Exploring the Psychosocial Adjustments of Chinese Parents of Children with Cancer or Hematological Disorders.

机构信息

Faculty of Medicine, JC School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong.

School of Pharmacy, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong.

出版信息

Int J Environ Res Public Health. 2021 Jul 23;18(15):7815. doi: 10.3390/ijerph18157815.

Abstract

OBJECTIVES

Parents of children diagnosed with critical illnesses face multiple challenges during their caregiving experience. However, relevant studies have been limited in the Chinese context. Guided by the stress and coping model, we conducted a qualitative study to identify the stressors, coping strategies, and adjustment experiences of Hong Kong parents of children with cancer or hematological disorders.

METHODS

We recruited 15 parents of children with cancer or hematological disorders requiring bone marrow transplantation and were currently >2 years post-treatment. They participated in a 30-min semi-structured interview. Thematic analysis was performed using the grounded theory approach.

RESULTS

The stressors reported by parents included a high caregiving burden during their children's diagnosis and treatment stages. The fear of recurrence, the need for information, and concerns about late effects were also common among the parents during their children's transition/survivorship stage. To cope with these stressors, the parents commonly used problem-focused (e.g., seeking help from professionals and support groups) and emotion-focused (e.g., behavioral distractions, venting, and crying) strategies. Despite these stressors, parents reported positive changes through the caregiving experience, such as improved family relationships, developing health-protective habits, and the reprioritization of different aspects of life.

CONCLUSIONS

Parents encounter different stressors during the cancer care continuum. Using different coping strategies, parents experience positive changes amidst caregiving. Future studies should explore culturally relevant adaptive coping strategies to enhance parents' psychosocial adjustment.

摘要

目的

患有危重病的儿童的父母在照顾过程中面临多种挑战。然而,相关研究在中文语境下较为有限。本研究以压力和应对模型为指导,对香港癌症或血液系统疾病患儿的父母进行了定性研究,以确定他们的压力源、应对策略和适应经验。

方法

我们招募了 15 名正在接受骨髓移植治疗且治疗后时间超过 2 年的癌症或血液系统疾病患儿的父母。他们参加了 30 分钟的半结构式访谈。使用扎根理论方法对主题进行分析。

结果

父母报告的压力源包括儿童诊断和治疗阶段的高护理负担。在儿童过渡/生存阶段,父母还普遍担心复发、需要信息以及对晚期影响的担忧。为应对这些压力源,父母通常使用问题焦点(例如,向专业人士和支持小组寻求帮助)和情绪焦点(例如,行为分散、发泄和哭泣)策略。尽管存在这些压力源,但父母通过照顾经历报告了积极的变化,例如改善了家庭关系、养成了健康保护习惯以及重新优先考虑生活的不同方面。

结论

父母在癌症照护连续体中面临不同的压力源。通过使用不同的应对策略,父母在照顾过程中经历了积极的变化。未来的研究应探索文化相关的适应性应对策略,以增强父母的心理社会适应。

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