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

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

Appelbaum, Michelle Gellman; Smolowitz, Janice L.

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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.

© 2012 American Association of Neuroscience Nurses

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