Families discovering asthma in their high-risk infants and toddlers with severe persistent disease

Interpretive phenomenology was used to discover the earliest experiences of families of children younger than 4 years hospitalized for severe persistent asthma. The children who were African American or Latino and living in poverty were at highest risk of morbidity and mortality. Three families with distinctly varied responses to early symptoms were chosen from an investigation of 11 families for this study. Each gave three home interviews and participated in home observations. All families experienced life-changing responses to their children's distressed breathing. All had experienced asthma in themselves or others that shaped their beliefs and management patterns. Family experiences prior to and following diagnosis are discussed. Findings suggest that understanding these experiences and respecting families' earliest responses will help clarify established family management patterns for severe asthma in infants and toddlers and will enhance the ability of providers to guide the care of these families and children.