Parental Illness Representations and Asthma Management

与其他疾病相比，哮喘更需要卫生保健提供者、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、治疗目标、药物的作用和自我管理实践有一个共同的理解。文献报道的发病率结果和我们目前研究的数据表明，这不是护理，患者和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，以及与这种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)识别哮喘“专业模式”与“患者/家庭模式”之间的差异；3)确定人口统计学和其他背景特征对疾病表征、父母疾病表征和父母/提供者关系以及期望结果的影响；4)评估父母疾病和父母/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200名不同社会人口统计学背景的哮喘儿童（4-12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。访谈还将评估父母在疾病的性质（身份）及其症状、原因、预期结果和药物作用等领域的疾病表现。数据分析将包括相对于专业模型对父母疾病表现的描述；亚组比较（基于人口统计学和背景特征）疾病表现、医疗保健寻求和药物治疗方案的充分性；并建立模型来评估疾病表征在预测哮喘管理结果中的独特作用。

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, treatment goals, the role of medications, and self-management practices. Morbidity outcomes reported in the literature and data from our current studies suggest that this is not the care and that patients and 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 this illness representations. Specifically the study is designed to: 1) Describe the illness representations of parents of children with asthma; 2) Identify the discrepancies between the "professional model" of asthma and the "patient/family model", 3) Determine the impact of demographic and other background characteristics on the illness representation, the parental illness representation and the parent/provider relationship, and desired outcomes; 4) Evaluate the unique contributions of the parental illness 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 200 children with asthma (ages 4-12 years of age) of diverse socio- demographic 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 vis a vis the professional model; subgroup comparisons (based on demographic and background characteristics) of the illness representation, health care seeking, and adequacy of the medications regimen; and modeling to evaluate the unique role of the illness representation in predicing asthma management outcomes.