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

J Neurosci Nurs. 2012 Feb;44(1):36-42. doi: 10.1097/JNN.0b013e31823ae4de.

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.

MeSH terms

  • Adaptation, Psychological*
  • Adolescent
  • Adult
  • Attitude to Health
  • Cerebral Palsy / nursing*
  • Cerebral Palsy / psychology*
  • Child
  • Child, Preschool
  • Father-Child Relations*
  • Fathers / psychology*
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Nursing Methodology Research
  • Severity of Illness Index
  • Young Adult