Voices of Parents of Children with Neurofibromatosis 1(NF)

Abstract

This presentation, phase I of an American Nurses’ Foundation funded study, is based on unanalyzed qualitative data from a prior study (Dylis, 2003) exploring family functioning in a large international sample of parents of children with Neurofibromatosis 1 (NF), the most common single gene disorder involving the nervous system. The purpose of this study was to identify themes from parental responses to two questions: ‘What do parents of children with NF want from health care providers?’ and ‘What were parental experiences at the initial time of their child’s NF diagnosis.’ Preliminary content analysis themes included parental desires for provider sensitivity and for providers to provide holistic care, accurate information, appropriate communication, referrals, support, and respect. Diagnostic experience themes were symptom management based on the NF diagnostic criteria or specific system manifestations, expressed concern from others resulting in health care intervention, and stories of diagnostic delays, inaccuracies, and dismissal of parental knowledge. The results from this phase might provide beginning qualitative evidence to assist in the future development of individualized nursing interventions aimed at improving the quality of life for families having a member(s) with NF. Knowledge of parental differences and similarities is essential in developing these interventions.