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On the outside looking in: a phenomenological study of the lived experience of Australian adults with a disorder of the corpus callosum.

Maree MaxfieldMonica S CooperAnne KavanaghAlexandra DevineLiz Gill Atkinson
Published in: Orphanet journal of rare diseases (2021)
This paper contributes to filling the knowledge gap around a rare congenital brain disorder affecting the lives of adults. Findings confirm a considerable lack of information and support for adults living with corpus callosum disorders. Greater professional and societal understanding is needed to improve access to the key life domains of education, employment and social inclusion for adults with a DCC. To instigate truly effective change, social research must tackle the issues of applicability and impact to alter the dominance of uninformed practices, hindered by prevailing myths. This research paves the way for further phenomenological studies in which participant narrative is vital. Further research will elicit stronger policy and service responses for all current and emerging adults with a DCC.
Keyphrases
  • healthcare
  • mental health
  • health information
  • primary care
  • resting state
  • public health
  • white matter
  • mental illness
  • functional connectivity
  • multiple sclerosis
  • brain injury
  • social media
  • cerebral ischemia