Appreciating life: being the father of a child with severe cerebral palsy.
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.
Saint Francis Hospital, Poughkeepsie, NY, USA. mga11@caa.columbia.edu
Michelle Gellman
MG
Appelbaum
Janice L
JL
Smolowitz
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D002547:Cerebral Palsy / Q000451:nursing* / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D005219:Father-Child Relations; D005220:Fathers / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D015404:Nursing Methodology Research; D012720:Severity of Illness Index; D055815:Young Adult