Together for Short Lives
Call the Helpline 0808 8088 100

Appreciating life: being the father of a child with severe cerebral palsy

Journal title
The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses
Publication year
2012
Author(s)
Appelbaum, M. G.; Smolowitz, J. L.
Pages
36-42
Volume
44
Number
1

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.

Research abstracts