Diagnosing the child, diagnosing the mother: The experience of birth mothers of children diagnosed with Fetal Alcohol Spectrum Disorder.

摘要

Fetal Alcohol Spectrum Disorder (FASD) is a constellation of physical, behavioral, emotional, social, and cognitive deficits caused solely by a mother drinking while pregnant. For every identified child there is a mother who comes to know she is the cause of her child's disabilities. How does she feel, think, and react when she comes to fully understand the FASD diagnosis? The purpose of this study was to describe the lived experience of birth mothers receiving the diagnosis of FASD for their child.;Hermeneutic phenomenological methodology was used to answer the research question. Nine birth mothers were interviewed about their experience. The interview transcripts were analyzed using van Manen's holistic examination and linguistic transformation until the themes of the experience were revealed. Hermeneutic interpretation was used to deepen the meanings uncovered in the analysis.;Five themes emerged from the analysis of the transcripts. The first theme, something doesn't seem right with my child, describes the sense of dread that something is wrong. Then the words are spoken, and the consequential meaning of the diagnosis shifts from child to mother in the theme I can't believe this is happening to me, and back to the child with the theme I can't believe I've done this to my child. The theme I need you to see me, hear me, help me reflects the experience of the mother with the health care provider who made the diagnosis. Finally, to the mother the receiving of the diagnosis is lifelong, reflected in the theme I can't fix it; I can't make it better.;The themes revealed in this study have implications for health care and education specialists. By deeply understanding and appreciating the mothers' experience we can better anticipate the kinds of supports they might need and the approaches from the diagnostics team that might be most useful to the mothers at the time of the diagnosis. We can empower the mothers and help them come to terms with their own experience so they are better able to meet the unique needs of their child with FASD.