急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案的构建及应用研究

发布时间：2018-07-28 12:12

【摘要】：研究背景急性淋巴细胞性白血病(Acute Lymphoblastic Leukemia,ALL)是儿童期最常见的恶性肿瘤,其高发年龄为2-4岁,由于患儿年龄较小,认知和自护能力有限,其照护主要由父母作为照顾者来进行。ALL患儿父母承担诸多患儿照护责任,缺乏疾病知识和照护经验,因此存在多方面的支持性照护需求,亟需专业可及的指导、支持和干预。移动医疗在慢性病自我管理、健康促进,提高治疗依从性等卫生保健方面具有积极的推动作用。智能手机上安装的第三方应用程序也因其便捷性、实时性、可及性及互动性等优势,成为近年来移动医疗发展的重要技术手段,逐渐开始应用于医疗照护领域。课题组前期与美国华盛顿国立儿童医学中心科研团队共同合作,在上海市科学技术委员会政府间国际合作课题的资助下,引入“移动医疗”新理念,结合ALL患儿父母需求的内容与规律,研发了适用于Android系统的“白血病健康管理智能手机应用程序”。鉴于此,如何构建以应用程序为核心的急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案,并开展临床应用及其效果评价是亟需解决的重要研究问题。目的1、构建急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案;2、开展急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案的有效性评价。方法1、急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案的构建(1)主要干预工具“白血病健康管理智能手机应用程序”的可用性评价1)可用性及其评价方法学文献研究:对国内外文献进行检索,分析“可用性”的概念形成及发展、概念涉及的相关属性、可用性评价常用方法、评价工具等。2)癌症相关移动医疗应用程序可用性评价的概括综述(Scoping Review):严格遵循Arksey和O’Malley提出的五步法(确立研究问题,确定相关研究,文献筛选,提取数据,收集、总结、报告研究结果)对2000.1至2013.12的癌症相关移动医疗应用程序可用性评价的文献进行检索和筛选,对纳入文献进行概括综述。3)应用程序可用性评价:采用混合研究方法,先后纳入医护人员和ALL患儿父母对应用程序的可用性进行评价,通过质性访谈了解研究对象对应用程序的使用感受;并通过后台收集ALL患儿父母对应用程序健康宣教相关3个模块使用情况数据,结合质性和量性数据对应用程序的可用性进行评价。(2)急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案的构建1)基于智能手机应用程序的癌症相关移动医疗干预的概括综述(Scoping Review):遵循Arksey和O’Malley提出的五步法,对2000.1至2014.12的国内外癌症相关基于智能手机应用程序的移动医疗干预进行检索和筛选,对纳入文献进行概括综述。2)急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案的构建:结合文献研究结果、应用程序的可用性评价结果和本课题研究对象的实际情况,构建急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案。3)急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案的优化:邀请专家进行专家工作会议,讨论初步构建的方案,根据专家意见进行修改和优化,形成急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案。2、急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案的有效性评价为尽量减少干预组与对照组研究对象间的沾染,本研究首先在上海市儿童医学中心、苏州大学附属儿童医院中招募对照组ALL患儿父母进行基线调查,3个月后对对照组研究对象进行第二次调查。待对照组所有患儿父母间隔3个月的2次调查均结束后,再在病区内招募干预组研究对象。对干预组ALL患儿父母进行与对照组相同的基线调查,后按制定的“急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案”实施干预,干预实施3个月后对干预组患儿父母进行第二次调查。分析量性数据来评价该方案对于ALL患儿父母在社会支持、焦虑、抑郁、照顾负担、疾病不确定感、生活质量、疾病和照护相关知识的了解和需求程度的影响,并进行质性访谈了解干预组患儿父母接受干预的感受。结果1、急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案的构建(1)主要干预工具“白血病健康管理智能手机应用程序”的可用性评价1)可用性及其评价方法学文献研究:对可用性的概念形成及发展、概念涉及的相关属性、可用性评价常用方法、评价工具进行了分析。2)癌症相关移动医疗应用程序可用性评价的概括综述(Scoping Review):共检索到文献7178篇,最终纳入全文文献10篇和无全文的会议摘要6篇,发表时间为2007至2013年。对纳入文献中应用程序所针对的癌症种类、可用性评价的研究设计、研究对象、持续时间、评价方法、评价的可用性要素等进行了分析。3)应用程序可用性评价:可用性评价期间未出现应用程序故障,研究对象配合度高,均全程参与可用性评价。医护人员和患儿父母认为应用程序具有可理解性、易学性、易用性、有效性和满意性的特点,可用性良好。患儿父母表示愿意继续使用应用程序辅助其照护患儿。应用程序可作为为ALL患儿父母提供支持的移动医疗工具,并有助于促进ALL患儿父母为患儿提供高质量照护。(2)急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案的构建1)基于智能手机应用程序的癌症相关移动医疗干预的概括综述(Scoping Review):共检索到文献8088篇,最终纳入基于智能手机应用程序的癌症相关移动医疗干预研究5篇,其中3篇为研究计划,发表时间为2009至2014年。对纳入的研究所用应用程序、研究设计、干预对象、样本量、研究方法、干预时间、结果评价、研究结果和结论进行了分析。2)急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案的构建:初步构建的急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案包括应用程序使用指南、干预方案、评价体系及后台管理方案。3)急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案的优化:通过专家工作会议对方案进行修订,最终形成了以应用程序和微信公众平台为主要干预要素的干预方案,并配以应用程序使用指南、评价体系和基于网页的后台管理方案的急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案。2、急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案的有效性评价于2015.6在上海儿童医学中心和苏州儿童医院招募对照组ALL患儿父母50例,3个月后43名患儿父母完成前后两次的调查。后招募51名ALL患儿父母入干预组,49名患儿父母全程参与了持续3个月的干预。两组在研究前后两次调查数据差值比较结果显示,相比对照组患儿父母,干预组患儿父母焦虑减轻(P=0.030),疾病不确定感减轻(P=0.007),社会功能(P=0.014)提高,对疾病和照护相关知识的了解程度提高(P=0.000),对疾病和照护相关知识的需求程度降低(P=0.000)。质性访谈结果显示干预组患儿父母对整个干预反应良好,整体照护满意度良好。结论1、本课题关于癌症相关移动医疗应用程序可用性评价和基于智能手机应用程序的癌症相关移动医疗干预的概括综述全面回顾了相关文献,突显了本课题在癌症移动医疗领域内的先进性,同时也为本课题构建移动医疗支持性照护方案及后续开展移动医疗领域内相关研究提供了极高的参考和指导价值。2、课题组前期构建的应用程序的可用性良好,具有可理解性、易学性、易用性、有效性和满意性的特点,可作为为ALL患儿父母提供支持的移动医疗工具,并有助于促进ALL患儿父母为患儿提供高质量照护。3、本课题构建了“急性淋巴细胞性白血病患儿父母移动医疗支持性照护方案”,并通过分组实验证实了该方案的有效性,减轻了ALL患儿父母焦虑和疾病不确定感,提升了其社会功能,提高了患儿父母对疾病和照护相关知识的了解程度,降低了对疾病和照护相关知识的需求程度,ALL患儿父母对整个干预反应良好。本课题对移动医疗在癌症患儿父母支持性照护干预中的应用与发展具有借鉴和参考价值。
[Abstract]:Background Acute Lymphoblastic Leukemia (ALL) is the most common malignant tumor in childhood. Its high incidence age is 2-4 years old. Due to the younger age and limited ability of cognition and self-care, the care of the children is mainly taken by parents as caregivers to undertake many children's care responsibility and lack of disease in children with.ALL. Knowledge and care experience, so there are many supportive care needs, and there is an urgent need for professional and effective guidance, support and intervention. Mobile medical care has a positive impact on health care such as chronic disease self management, health promotion, and improvement of treatment compliance. The third party applications installed on the smartphone are also convenient because of their convenience. As an important technical means of mobile medical development in recent years, it has gradually begun to apply to the field of medical care. The project group co operated with the research team of the National Center for children's medicine in Washington, D.C., and introduced in the support of the intergovernmental international cooperation project of the Shanghai Committee of science and technology. The new concept of mobile medical treatment, combined with the contents and rules of the parents' needs of ALL children, developed a "smart phone application for leukemia health management" for the Android system. In view of this, how to construct a mobile medical supportive care program for children with acute lymphoblastic leukemia at the core of the application and to carry out clinical practice Application and effect evaluation is an important research problem which needs to be solved urgently. Objective 1, construction of parental mobile medical supportive care scheme for children with acute lymphoblastic leukemia. 2, the effectiveness evaluation of parental mobile medical supportive care scheme for children with acute lymphoblastic leukemia. Method 1, children with acute lymphoblastic leukemia. Construction of parental mobile medical supportive care scheme (1) the availability evaluation of the main intervention tool "leukemia health management smart phone application" 1) availability and evaluation methodology: retrieval of domestic and foreign literature, analysis of the concept formation and development of "usability", related attributes and availability of concepts. Evaluation of common methods, evaluation tools, etc..2) a summary of the usability evaluation of cancer related mobile medical applications (Scoping Review): strictly follow the five step method proposed by Arksey and O 'Malley (establishing research problems, determining related research, literature screening, extracting data, collecting, summarizing, and reporting research results) on the cancer phase of 2000.1 to 2013.12 Search and screen the usability evaluation of mobile medical applications, summarize the availability of.3) application evaluation: a mixed study method is used to evaluate the usability of the application program by medical staff and parents of ALL children, and to understand the application program by qualitative interview. Use the feeling; and collect the data of the application of the 3 modules of the ALL children's parents to the application health education through the background, and evaluate the usability of the application with the qualitative and quantitative data. (2) the construction of the parental mobile medical support scheme for the children with acute lymphoblastic leukemia (1) based on the Smartphone Application A summary of cancer related mobile medical interventions (Scoping Review): following the five step method proposed by Arksey and O 'Malley, retrieval and screening of mobile medical intervention based on smart phone applications for 2000.1 to 2014.12 cancers at home and abroad, and a summary review of the literature,.2) children with acute lymphoblastic leukemia The construction of parental mobile medical supportive care scheme: combined with the results of literature study, the results of usability evaluation of the application and the actual situation of this subject, the construction of parental mobile medical support care scheme for acute lymphoblastic leukemia children.3) parents mobile medical support for acute lymphoblastic leukemia children The optimization of the care scheme: inviting experts to meet the expert working meeting, discussing the preliminary construction plan, modifying and optimizing according to the expert opinion, forming the parents mobile medical supportive care program.2 for the children with acute lymphoblastic leukemia, the effectiveness of the parental mobile medical support care scheme for acute lymphoblastic leukemia patients. In order to minimize the contamination between the subjects of the intervention group and the control group, the study first took the baseline survey of the parents of the control group of ALL children recruited from the Shanghai children's medical center and the Children's Hospital Affiliated to Suzhou University in the control group. After 3 months, the subjects of the control group were examined second times. The parents of all children in the control group were between 3 months and 2 months. The same baseline survey was carried out between the parents of the ALL children in the intervention group and the control group, and the intervention was carried out according to the parents mobile medical support care scheme for children with acute lymphoblastic leukemia. After 3 months of intervention, the parents of the intervention group were second. Analysis of quantitative data to evaluate the impact of the scheme on the parents of ALL children in social support, anxiety, depression, care burden, disease uncertainty, quality of life, knowledge of disease and care related knowledge and demand, and to conduct qualitative interviews to understand the feelings of parents in the intervention group. Results 1, acute lymphocytes. The construction of parental mobile medical support care scheme for children with sexual leukemia (1) the availability evaluation of the main intervention tool "leukemia health management smart phone application" 1) availability and evaluation methodology literature research: concept formation and development of usability, related attributes involved in concept, common methods of usability evaluation, and evaluation of usability An overview of the usability evaluation of cancer related mobile medical applications (Scoping Review): a total of 7178 articles were retrieved, and 6 of the 10 and no full text summaries were included, and the publication time was 2007 to 2013. The availability evaluation of the types of cancer in the literature included in the literature. Research design, research object, duration, evaluation method, availability factors of evaluation, etc..3 application usability evaluation: no application failure during usability evaluation, high coordination of research objects, all participation evaluation. Medical and child parents think the application is understandable, The parents expressed their willingness to continue to use the application program to assist the care of the children. The application can be used as a mobile medical tool to support the parents of ALL children and to help the parents of ALL children to provide high quality care for the children. (2) acute lymphoblastic sex The construction of a mobile medical supportive care scheme for children with leukemia 1) a summary of cancer related mobile medical interventions based on smart phone applications (Scoping Review): a total of 8088 papers were retrieved, and 5 cancer related mobile medical intervention studies based on smart phone applications were included, of which 3 were the research programs. The time of publication was 2009 to 2014. The application program, research design, object of intervention, sample size, research methods, intervention time, result evaluation, results and conclusions were analyzed in.2) the construction of parental mobile care plan for children with acute lymphoblastic leukemia: initial construction of acute lymphoblastic cells. Parents mobile medical supportive care programs for children with sexual leukemia include application guidelines, intervention programs, evaluation system and backstage management scheme.3) the optimization of parental mobile medical support care scheme for children with acute lymphoblastic leukemia: the program is revised through expert meeting, and the application program is finally formed. The intervention program with the WeChat public platform as the main intervention element, with the application guide, the evaluation system and the backstage management scheme based on the web page, the parents mobile medical support care program.2 for the children with acute lymphoblastic leukemia, and the parents mobile medical support care scheme for the children with acute lymphoblastic leukemic disease. The effectiveness evaluation was conducted in 2015.6 children's parents of ALL in Shanghai Children's Medical Center and Suzhou children's Hospital, 50 parents were recruited in the control group, and two times before and after completion of 43 children's parents were completed in 3 months. 51 parents of children with ALL were recruited into the intervention group, and 49 children were involved in the last 3 months' intervention. The two groups were investigated and two times before and after the study. The difference results showed that the parents of the children of the control group were less anxious (P=0.030), the disease uncertainty (P=0.007), the social function (P=0.014), the knowledge of disease and care related knowledge increased (P=0.000), the degree of demand for disease and care related knowledge was reduced (P=0.000). Qualitative interview results were found. The results showed that the parents of the intervention group responded well to the whole intervention and had a good overall care satisfaction. Conclusion 1. A comprehensive review of the usability evaluation of cancer related mobile medical applications and the cancer related mobile medical intervention based on the Smartphone Application is a comprehensive review of the related literature, which highlights the movement of this subject in cancer movement. The advanced nature in the medical field also provides a very high reference and guidance value.2 for the construction of mobile medical support care scheme and subsequent mobile medical field, which has good usability, comprehensible, easy to use, usability, effectiveness and satisfaction. It can be used as a mobile medical tool to support the parents of ALL children, and helps to promote the parents of children of ALL to provide high quality care for children with.3. This project has constructed a "parental mobile medical supportive care program for children with acute lymphoblastic leukemia", and confirmed the effectiveness of the scheme by grouping experiments and alleviated the ALL suffering. Children's parents' anxiety and disease uncertainty raised their social function, improved their parents' understanding of disease and care related knowledge, reduced the degree of demand for disease and care related knowledge, and the parents of ALL children responded well to the whole intervention. The application and development are of reference and reference value.
【学位授予单位】：第二军医大学
【学位级别】：博士
【学位授予年份】：2017
【分类号】：R473.73

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