Milofsky, Beth, "I have the child who has something else." Entering the Worlds of How Mothers Make Sense of `Diagnosis' within the context of their Child with a Rare or Undiagnosed Neurodevelopmental Condition in Ireland: An Interpretative Phenomenological Analysis, Trinity College Dublin, School of Linguistic Speech & Comm Sci, Clin Speech & Language Studies, 2024.
Research Summary:
Summary: Information on the experiences of parents whose children have rare or undiagnosed conditions is lacking in Ireland. It is suggested that these parents experience unique challenges, in comparison to parents of children with more widely understood ‘mainstream’ conditions. This research aimed to gain entry into the mothers’ lifeworlds to understand their experiences of diagnosis. This research found six themes (1) Entering the world of diagnosis: “There’s nothing wrong but everything is wrong”; (2) The world of rare disease: What’s in a name?; (3) The world of mothers in healthcare systems: “You adjust to it because you have to, because your child needs you to”; (4) Etching of the mothers’ inner worlds: “I’ll never forget”; (5) Living within a sociocultural world: Constructions and perceptions of ‘disability’ - “Why do I have to use the word disorder to describe my child?”; (6) The world of the sibling: “Second fiddle”. Suggestions for healthcare communication, procedures, and education are discussed. The findings may also contribute to national and international health policy development in rare diseases.
Dr Milofsky's full research thesis (tcd.ie)
