Children with Chronic Health Conditions: Perceptions of Family Management

患有慢性疾病的儿童：对家庭管理的看法

• 批准号: 8002425
• 负责人: Barbara L Beacham
• 金额: $ 4.14万
• 依托单位: UNIVERSITY OF PENNSYLVANIA
• 依托单位国家: 美国
• 财政年份: 2010
• 资助国家: 美国
• 起止时间: 2010-07-01 至 2011-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8002425
• 关键词: 13 year old; Acute; Address; Adult; Age; Area; Child; Childhood; Chronic; Complement; Data; Disease; Event; Family; Family Process; Foundations; Health; Health Services; Healthcare; Individual; Intervention; Interview; Knowledge; Life; Measurement; Modeling; Parents; Perception; Performance; Play; Public Health; Quality of life; Reaction; Resources; Role; Sampling; Schools; Science; Social Network; Voice; family management; improved; insight; peer; public health relevance; social; tool

DESCRIPTION (provided by applicant): This study will examine family management of children with chronic health conditions (CHC) from the perspective of the child with a CHC. These children play a significant role in the family process with condition management issues that range from negligible to extremely demanding. The child's voice needs to be added to that of their parents in order to obtain a more complete model of family management of CHCs. Children with a CHC between the ages of 8 and 13 will provide insight into their perspective on their family life and condition management. Data from this non disease specific sample will provide insights that complement existing disease specific science. The specific aims of this study are to: 1) describe family management of childhood chronic health conditions (CHCs) from the perspective of the child who is between 8 and 13 years old and 2) describe the child's perception of how family management of the CHC relates to other areas of his/her life (school performance, participation in social and extracurricular activities, health care services, social network [peers and adults]). Individual interviews will be conducted to better understand the child's perspective of their family's management of the CHC, and what it means to them and their daily life. The data will be analyzed by an inductive content analysis with a more directed focus to examine the other areas of life. The knowledge we gain from these children will increase the scope of our understanding of family management of chronic conditions during childhood. It will also develop a foundation to 1) develop measurement tools appropriate for use with children with chronic conditions and 2) develop interventions that address both parental and child concerns. Discovering ways to improve condition management for families and individuals is important as improved management can decrease acute exacerbations, decrease use of health care resources, and improve the child and family quality of life. PUBLIC HEALTH RELEVANCE: Increasing our understanding of the child's reaction to the management of their chronic condition is the first step to creating intervention strategies aimed at improving condition management. Better condition management will decrease the burden on health care resources and improve the child's ability to participate in their everyday life events.

描述（由申请人提供）：本研究将从慢性健康状况（CHC）儿童的角度研究CHC儿童的家庭管理。这些儿童在家庭过程中发挥着重要作用，其条件管理问题从微不足道到要求极高。儿童的声音需要加入到其父母的声音中，以获得一个更完整的社区保健中心家庭管理模式。8至13岁的CHC儿童将深入了解他们对家庭生活和病情管理的看法。来自这种非疾病特异性样本的数据将提供补充现有疾病特异性科学的见解。这项研究的具体目标是：1）从8至13岁儿童的角度描述儿童慢性健康状况的家庭管理，2）描述儿童对慢性健康状况的家庭管理与其生活其他领域的关系的看法（学校表现、参与社会和课外活动、医疗保健服务、社交网络[同龄人和成年人]）。我们会进行个别访问，以更深入了解儿童对家庭管理儿童健康中心的看法，以及这对他们和他们的日常生活意味着什么。这些数据将通过归纳内容分析进行分析，更有针对性地关注生活的其他领域。我们从这些儿童身上获得的知识将增加我们对儿童时期慢性病家庭管理的理解范围。它还将建立一个基础，以1）开发适合慢性病儿童使用的测量工具，2）开发解决父母和儿童关切的干预措施。发现改善家庭和个人病情管理的方法很重要，因为改善管理可以减少急性加重，减少医疗资源的使用，并改善儿童和家庭的生活质量。 公共卫生关系：增加我们对儿童对其慢性病管理的反应的理解是创建旨在改善病情管理的干预策略的第一步。更好的病情管理将减轻医疗资源的负担，提高儿童参与日常生活活动的能力。