Parental Illness Representations and Asthma Management

描述（由申请人提供）：与任何其他疾病相比，哮喘需要医疗保健提供者、患者和家庭之间的持续合作，以实现最佳治疗。为了使这种伙伴关系发挥作用，患者/家属和卫生保健提供者需要对哮喘的性质、症状、治疗目标、药物和自我管理实践有共同的了解。文献报道的发病率结果和我们目前研究的数据表明，情况并非如此，患者和卫生保健专业人员对哮喘的看法完全不同。本研究的主要目的是探讨父母疾病表征与哮喘管理之间的差异的本质，以及与这些疾病表征相关的前因和结果。具体而言，本研究旨在：1)描述哮喘儿童父母的疾病表征；2)描述孩子的症状经历；3)识别哮喘“专业模式”与“患者/家庭模式”的差异；4)确定人口统计学和其他背景特征对父母疾病表征、儿童症状体验、父母/医疗保健提供者关系以及期望结果的影响；5)评估父母的疾病表现，孩子的症状经历，以及父母/提供者关系对适当的医疗保健寻求和药物治疗方案的充分性的独特贡献。该研究采用横断面设计，将从城市诊所和社区儿科诊所招募215名不同社会人口统计学背景的哮喘儿童（5-12岁）。半结构化访谈将收集有关儿童疾病严重程度、使用药物和卫生保健联系人的信息。访谈还将在疾病的性质（身份）及其症状、原因预期结果和药物的作用等领域评估父母疾病的表征。数据分析将包括对父母疾病表征的描述，如专业模型；描述儿童的症状经历，亚组比较（基于疾病表现的背景特征、医疗保健寻求和药物治疗方案的充分性），并建立模型以评估疾病表现在预测哮喘管理结果中的独特作用。

DESCRIPTION (provided by applicant): More than any other illness, asthma necessitates an on-going partnership between health care provider, patient, and family for optimal treatment to take place. In order for this partnership to work, patients/families and health care providers need to have a common understanding of the nature of asthma, its symptoms, treatment goals, medications, and self-management practices. Morbidity outcomes reported in the literature and data from our current studies suggest that this is not the case, and that patients and health care professionals think about asthma in quite different ways. The broad objective of the study Parental Illness Representations and Asthma Management is to explore the nature of the discrepancies between the parental and professional model of asthma as well as antecedents and outcomes related to these illness representations. Specifically the study is designed to: 1) Describe the illness representation of parents of children with asthma; 2) Describe the child's symptom experience; 3) Identify the discrepancies between the "professional model" of asthma and the "patient/family model"; 4) Determine the impact of demographic and other background characteristics on the parental illness representation, the child's symptom experience, and the parent/health care provider relationship, and desired outcomes; 5) Evaluate the unique contributions of the parental illness representation, the child's symptom experience, and the parent/provider relationship to appropriate health care seeking and adequacy of the medication regimen. The study utilizes a cross-sectional design and will enroll 215 children with asthma (ages 5-12 years of age) of diverse sociodemographic backgrounds from an urban clinic and a community pediatric practice. A semi-structured interview will gather information about the child's illness severity, medications used, and health care contacts. The interview will also assess the parental illness representation in the domains of the nature (identity) of the disease and its symptoms, cause expected outcomes and the role of medications Data analysis will include a description of the parental illness representation visa vie the professional model; a description of the child's symptom experience, subgroup comparisons (based on background characteristics of the illness representation, health care seeking, and adequacy of the medication regimen; and modeling to evaluate the unique role of the illness representation in predicting asthma management outcomes.