Parental Illness Representations and Asthma Management

University Of Rochester, Rochester NY

Investigators

Abstract

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.