An exploratory study of the psychosocial experiences of parents of infants diagnosed with Infantile Spasms

© 2017 Kelly Louise O’MaraInfantile Spasms is a severe form of infantile epilepsy with a variable, but typically poor, long-term prognosis. The lived experiences of parents of children with this condition have never previously been examined. However, it is well understood that parents of children with other paediatric conditions, such as health or developmental conditions diagnosed in infancy or paediatric epilepsy, experience a range of stressors. This thesis explores the lived experience of mothers who care for their child who has been diagnosed with Infantile Spasms. The qualitative study design, based upon principles of phenomenology, utilized semi-structured interviews with a small sample of mothers, in order to identify in-depth narratives via a process of thematic analysis. The study highlighted three major themes of experience for mothers of children with this condition. These themes were; the process of seeking and experiencing the diagnosis of Infantile Spasms, adjusting to the child’s prognosis from Infantile Spasms and living with and making meaning from a diagnosis of Infantile Spasms. Mothers described the distress and guilt associated with the diagnosis, particularly if it was delayed. Many mothers described communication by healthcare professionals at the point of diagnosis as important, and shared positive and negative examples of communication. Mothers related that adjusting to their child’s refractory seizures or developmental deficits from this condition was challenging, and many had limited supports to assist them in doing so. However, many mothers were determined to make positive meaning from the experience, by assisting others or contributing to research about the condition. This study is the first to outline the experience of mothers of children diagnosed with Infantile Spasms. Considerations for further research and clinical practice are outlined in the study