Adaptions of Parents of Children with a Serious Disorder and a Delayed Diagnosis

Abstract

This study examined experiences of parents of children with a serious medical disorder and a delayed diagnosis. This was a mixed-methods variable-oriented descriptive study of interrelations among variables. Data were collected from eighteen parents recruited through an announcement in the newsletter of the National Organization for Rare Disorders. Qualitative data were collected through semi-structured personal phone interviews and quantitative data were collected through online questionnaires measuring State-Trait Anxiety and Resilience. The data were analyzed by the use of codes derived in an iterative process, using the Atlas Ti software program for storage and data management, and the SPSS software program for statistical analysis of the quantitative data. Qualitative findings included reports of finding meaning in the experience of Ambiguous Loss; intense frustration with medical professionals; rare interactions with social workers; and negative experiences with school administrations. Quantitative findings included high levels of resilience associated with lengthy searches for a diagnosis.