Qian Liu, Marcia A Petrini, Dan Luo, Bing Xiang Yang, Jiong Yang, Joan E Haase
{"title":"中国父母有一个患有急性淋巴细胞白血病的孩子的经历。","authors":"Qian Liu, Marcia A Petrini, Dan Luo, Bing Xiang Yang, Jiong Yang, Joan E Haase","doi":"10.1177/1043454220975463","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Method: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":1,"journal":{"name":"Accounts of Chemical Research","volume":null,"pages":null},"PeriodicalIF":16.4000,"publicationDate":"2021-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454220975463","citationCount":"8","resultStr":"{\"title\":\"Parents' Experiences of Having a Young Child With Acute Lymphoblastic Leukemia in China.\",\"authors\":\"Qian Liu, Marcia A Petrini, Dan Luo, Bing Xiang Yang, Jiong Yang, Joan E Haase\",\"doi\":\"10.1177/1043454220975463\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>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.</p><p><strong>Method: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>\",\"PeriodicalId\":1,\"journal\":{\"name\":\"Accounts of Chemical Research\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":16.4000,\"publicationDate\":\"2021-03-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://sci-hub-pdf.com/10.1177/1043454220975463\",\"citationCount\":\"8\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Accounts of Chemical Research\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1177/1043454220975463\",\"RegionNum\":1,\"RegionCategory\":\"化学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2020/11/30 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q1\",\"JCRName\":\"CHEMISTRY, MULTIDISCIPLINARY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Accounts of Chemical Research","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/1043454220975463","RegionNum":1,"RegionCategory":"化学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2020/11/30 0:00:00","PubModel":"Epub","JCR":"Q1","JCRName":"CHEMISTRY, MULTIDISCIPLINARY","Score":null,"Total":0}
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.
期刊介绍:
Accounts of Chemical Research presents short, concise and critical articles offering easy-to-read overviews of basic research and applications in all areas of chemistry and biochemistry. These short reviews focus on research from the author’s own laboratory and are designed to teach the reader about a research project. In addition, Accounts of Chemical Research publishes commentaries that give an informed opinion on a current research problem. Special Issues online are devoted to a single topic of unusual activity and significance.
Accounts of Chemical Research replaces the traditional article abstract with an article "Conspectus." These entries synopsize the research affording the reader a closer look at the content and significance of an article. Through this provision of a more detailed description of the article contents, the Conspectus enhances the article's discoverability by search engines and the exposure for the research.