A cross cultural examination of the experiences of parents of children when being diagnosed with Foetal and Neonatal Alloimmune Thrombocytopenia

Schofield, Cathy; Palmer, Andrea and Keech, Caroline (2019). A cross cultural examination of the experiences of parents of children when being diagnosed with Foetal and Neonatal Alloimmune Thrombocytopenia. Journal of Neonatal Nursing, 25(3) pp. 130–135.

DOI: https://doi.org/10.1016/j.jnn.2019.01.004

Abstract

Foetal and Neonatal Alloimmune Thrombocytopenia is a rare genetic disorder which is not generally diagnosed until the child has been born, and often not until several children have been affected may the diagnosis be made. Due to its rarity it is not easily diagnosed as the symptoms may be confused with normal birth trauma. Although the disorder has been the subject of medical research, the parents’ experiences of diagnosis and thereafter have not been previously studied. The current study analysed stories written by twelve European and North American mothers of babies diagnosed with the disorder, uploaded to an open access website. The findings suggest that there is a lack of information both within the public and medical domain about the condition which make diagnosis problematic. The rarity led parents on a search for further information and subsequent petitioning for prenatal screening to prevent future cases.

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