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The Lived Experience of Fathers Whose Children Are Diagnosed with a Genetic Disorder


  • The authors report no conflict of interest or relevant financial relationships.



To describe the father's experience of having a child diagnosed with a genetic disorder.


Interpretive phenomenological analysis.


In-person interviews for participants living within 100 miles of the researcher; phone interviews with participants living more than 100 miles from the researcher.


Six fathers of children diagnosed with genetic disorders.


Participants were recruited with the assistance of nurses, physicians, and genetic counselors. Snowball sampling, Internet and e-mail recruitment, and word of mouth were also used. Semistructured interviews were completed, audio recorded, and transcribed verbatim.


Five themes emerged: the impact of diagnosis, seeking understanding, coping with effects of the disorder, looking to the future, and addressing a father's needs.


Fathers of children diagnosed with genetic disorders described a lack of education and information regarding the diagnoses. They attributed this deficiency to a lack of knowledge among physicians, nurses, and other health care professionals. Coping with the effects of the disorder was identified as an integral part of adapting to meet the child's needs. Understanding the experience of a father whose child is diagnosed with a genetic disorder is necessary to ensure provision of proper intervention and care.