Book Description

Background: Family-centered education is critical to managing childhood asthma, the most common chronic disease of childhood in North America. Parents are largely responsible for the day-to-day management of their child's asthma; as such, finding effective ways to educate parents about asthma is essential to improving childhood asthma outcomes. It is known that the information needs of parents of children with asthma are not being met through current educational approaches despite the availability of high quality evidence on childhood asthma management. Patient-driven educational materials that leverage the power of the arts show promise in communicating health information, and may be useful for parents of children with asthma. However, arts-based knowledge translation approaches are in their infancy, and no such strategy has been developed for parents of children with asthma. Purpose: The purpose of this dissertation is to identify the information needs of parents of children with asthma, use these data to develop an arts-based educational material (i.e., arts- based knowledge translation tool), and thereby contribute to the emerging knowledge base of arts-based knowledge translation. Methods: This dissertation consists of four prototypes of an arts-based knowledge translation tool and four related papers: (I) a state-of-the- science review of the literature to determine the information needs of parents of children with asthma; (II) an interpretive descriptive qualitative study on the information needs and experiences of 21 parents of children with asthma, representing diverse backgrounds and stages of the illness trajectory; (III) a methods paper which outlines the process and challenges associated with developing a patient-driven arts-based knowledge translation tool; and (IV) a theoretical paper where a classification schema for arts- based knowledge translation strategies is developed. Findings and Conclusions: The following four knowledge gaps were identified and addressed through this dissertation: (I) knowledge about the information needs of parents of children with asthma was lacking in previous research; (II) the information needs of parents of children with asthma are not being addressed through current educational approaches; (III) innovative educational approaches to knowledge translation, such as arts-based approaches, may hold promise in childhood asthma but have not been developed or discussed; and (IV) the theoretical basis of arts-based knowledge translation approaches is underexplored. In this dissertation I address these limitations by identifying extant research on parents information needs in childhood asthma (paper one), using these findings to inform a qualitative research study of parents' information needs (paper two), developing four prototypes of a patient-driven arts-based knowledge translation tool for parents of children with asthma based on qualitative findings and best evidence about asthma management (paper three; appendices A through E), and developing an arts-based knowledge translation classification schema based on the mechanisms underlying these approaches (paper four). Through this research, I illustrate that parents of children with asthma have pervasive, unmet information needs and information deficits of varying types, which negatively impacts asthma management, child and family well-being. I demonstrate support for developing the patient-driven arts-based knowledge translation tool and present conceptual and pragmatic complexities associated with this process. These findings contribute to childhood asthma management through a creative and patient-centered approach, while substantively contributing theoretical and procedural knowledge to the growing domain of arts-based knowledge translation.