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Appreciating Life: Being the Father of a Child With Severe Cerebral Palsy

Appelbaum, Michelle Gellman; Smolowitz, Janice L.

Journal of Neuroscience Nursing:
doi: 10.1097/JNN.0b013e31823ae4de
Feature Article
Abstract

ABSTRACT: This phenomenological study examined the experience of being the father of a child with severe cerebral palsy (CP). Participants were selected using purposive sampling. Two interviews were conducted with 6 English-speaking, biological fathers whose children with CP (ages 5–27 years) were enrolled in a residential and day school in northeastern United States. Audiotaped interviews were transcribed, and thematic analysis was conducted using van Manen’s methodology. Themes identified were as follows: Lost in birth; My beautiful unique child; Illness as a way of life…you can’t get used to it and after a while it feels like no one cares; Partners—loyalty and commitment; How the world receives my child; Healthcare providers—I’m here; Torn…when your child can’t live at home…finding a place to live and grow; and Faith. Clinicians should encourage, value, and include fathers’ input during discussions of medical and social problems and when developing long-term care plans. Further research exploring the experiences of fathers of children with CP should be conducted.

Author Information

Janice L. Smolowitz, EdD DNP ANP, is a senior associate dean and professor of clinical nursing at Columbia University School of Nursing, New York, NY.

Questions or comments about this article may be directed to Michelle Gellman Appelbaum, DNSc PNP FNP, at mga11@caa.columbia.edu. She is a family nurse practitioner at Saint Francis Hospital in Poughkeepsie, NY.

The authors declare no conflicts of interest.

© 2012 American Association of Neuroscience Nurses