中国父母有一个患有急性淋巴细胞白血病的孩子的经历。

IF 1.9 3区 医学 Q2 NURSING Journal of Pediatric Oncology Nursing Pub Date : 2021-03-01 Epub Date: 2020-11-30 DOI:10.1177/1043454220975463
Qian Liu, Marcia A Petrini, Dan Luo, Bing Xiang Yang, Jiong Yang, Joan E Haase
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引用次数: 8

摘要

背景:了解父母的经历是制定对儿童和家庭需求敏感的干预措施的先决条件。在中国,父母对患有急性淋巴细胞白血病(ALL)的孩子的经历知之甚少。本现象学研究旨在描述父母在中国有一个患有ALL的孩子的经历。方法:采用有目的抽样法,在华中地区招募10名家长,采用Haase对Colaizzi现象学方法的改编,进行面对面、深度访谈。结果:确定了五个主题类别:(a)癌症诊断是一场可怕的灾难-天要塌下来,(b)与野兽搏斗,(c)摆出笑脸和其他应对策略,(d)诊断披露:如果我们告诉和如何告诉,以及(e)充满希望的期望:回归正常生活。结论:家长把孩子的健康放在第一位。他们努力管理预后的不确定性,并应对儿童痛苦、经济负担和耻辱造成的巨大压力。在孩子的癌症之旅中,父母们也表达了他们的韧性和希望。需要提供支持服务,加强特定家庭的保护因素(即家庭/社区支持、希望和积极应对),以提高复原力和生活质量。卫生保健专业人员应系统地评估家长的需求,提供有效的教育材料,并在整个癌症连续体中实施量身定制的干预措施。公众对癌症的教育和宣传也是必要的,以减少癌症相关的耻辱感,并为儿科肿瘤学提供财政援助和卫生保健资源。
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Parents' Experiences of Having a Young Child With Acute Lymphoblastic Leukemia in China.

Background: Understanding parents' experiences is a prerequisite to developing interventions that are sensitive to needs of children and families. In China, little is known about parental experiences of having a young child with acute lymphoblastic leukemia (ALL). This phenomenological study aimed to describe parental experiences of having a young child with ALL in China.

Method: Ten parents, recruited in central China using purposive sampling, participated in face-to-face, in-depth interviews using Haase's adaptation of Colaizzi's phenomenological method.

Results: Five theme categories were identified: (a) The Cancer Diagnosis as a Terrible Disaster-The Sky is Falling, (b) Fighting the Beast, (c) Putting on a Happy Face and Other Coping Strategies, (d) Diagnosis Disclosure: If We Tell and How to Tell, and (e) Hope-Filled Expectations: Returning to Normal Life.

Conclusion: Parents put their child's health as their top priority. They strive to manage uncertainty about prognosis and cope with enormous pressures caused by children's suffering, financial burden, and stigma. Parents also express their resilience and hope throughout their child's cancer journey. Support services to strengthen specific families' protective factors (i.e., family/community support, hope, and positive coping) are needed to foster resilience and quality of life. Health care professionals should systematically assess parents' needs, provide validated education materials, and implement tailored interventions across the cancer continuum. Public education and advocacy about cancer is also necessary to decrease cancer-related stigma, and provide financial aid and health care resources in pediatric oncology.

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来源期刊
CiteScore
3.10
自引率
0.00%
发文量
0
审稿时长
>12 weeks
期刊介绍: SPECIAL PATIENTS NEED SPECIAL NURSES Caring for children with cancer is one of the most technically and emotionally difficult areas in nursing. Not only are you dealing with children and adolescents who hurt, you must reassure and educate families, balance a multitude of other health care professionals, and keep up with ever-changing nursing practice and care. To help special nurses stay aware of the newest effective nursing practices, innovative therapeutic approaches, significant information trends, and most practical research in hematology and pediatric oncology nursing, you need the Journal of Pediatric Oncology Nursing. The journal offers pediatric hematology, oncology, and immunology nurses in clinical practice and research, pediatric social workers, epidemiologists, clinical psychologists, child life specialists and nursing educators the latest peer-reviewed original research and definitive reviews on the whole spectrum of nursing care of childhood cancers, including leukemias, solid tumors and lymphomas, and hematologic disorders. JOPON covers the entire disease process--diagnosis, treatment, recovery, and survival, as well as end-of-life care. Six times a year, the Journal of Pediatric Oncology Nursing introduces new and useful nursing care practice and research from around the world that saves you time and effort. Just some of the spirited topics covered include: Cancer survivorship including later-life effects of childhood cancer, including fertility, cardiac insufficiency, and pulmonary fibrosis Combination therapies Hematologic and immunologic topics Holistic, family-centered supportive care Improvement of quality of life for children and adolescents with cancer Management of side effects from surgery, chemotherapy, and radiation Management of specific symptoms/diseases/co-infections Medication tolerance differences in children and adolescents Pain control Palliative and end of life care issues Pharmacologic agents for pediatrics/clinical trial results Psychological support for the patient, siblings, and families The dynamic articles cover a wide range of specific nursing concerns, including: Advanced practice issues Clinical issues Clinical proficiency Conducting qualitative and quantitative research Developing a core curriculum for pediatric hematology/oncology nursing Encouraging active patient participation Ethical issues Evaluating outcomes Professional development Stress management and handling your own emotions Other important features include Guest Editorials from experts in the discipline, Point/Counterpoint debates, Roadmaps (personal insights into the nursing experience), and Proceedings and Abstracts from the annual Association for Pediatric Hematology/Oncology Nurses (APHON) conference. Your special patients need special nurses--stay special by subscribing to the Journal of Pediatric Oncology Nursing today! This journal is a member of the Committee on Publication Ethics (COPE).
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