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

Michelle Gellman Appelbaum, Janice L. Smolowitz

Research output: Contribution to journalReview article

4 Scopus citations

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 5Y27 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 lifeIyou can't get used to it and after a while it feels like no one cares; PartnersVloyalty and commitment; How the world receives my child; Healthcare providersVI'm here; TornIwhen your child can't live at homeIfinding 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.

Original languageEnglish
Pages (from-to)36-42
Number of pages7
JournalJournal of Neuroscience Nursing
Volume44
Issue number1
DOIs
StatePublished - 1 Feb 2012

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