Paper
Friday, 21 July 2006
This presentation is part of : Family Health Strategies
Parent-Provider Relationships: Parents of Children with Neurofibromatosis Speak
Ann M. Dylis, PhD, RN, School of Nursing, Bouve College of Health Sciences, Northeastern University, Boston, MA, USA
Learning Objective #1: describe the methodology used with undergraduate research assistants to analyze qualitative and quantitative data from parents of children with Neurofibromatosis 1.
Learning Objective #2: state 3 qualities that parents considered essential in health care professionals caring for their children with Neurofibromatosis 1, a genetic disorder.
Neurofibromatosis 1 (NF) is the most common single gene disorder involving the nervous system. Characterized by variable expressivity, it has an uncertain progression. Prior literature noted that the unpredictable trajectory of chronic childhood disorders, such as NF, contribute to parental uncertainty.  Parent provider literature indicated that trust and mutual participation decrease uncertainty and promote positive interaction.

The purpose of this mixed method study, funded by the American Nurses’ Foundation, is twofold.  First, identify emergent themes from two questions:  "What do parents of children with NF want from health care providers?" and "What were parental experiences at the time of their child's diagnosis?" This previously collected qualitative data was from an international sample of 337 parents of children with NF (Dylis, 2003). Second, determine through quantitative analysis if these themes vary based on scores of family functioning, uncertainty stress, and other significant predictors from the original study.

Content analysis (Sandelowski, 2000) was used to summarize the qualitative data, systematically apply codes, and record themes. Baccalaureate nursing students functioned as research assistants and applied concepts learned in their interdisciplinary research course. Parental themes include desires for providers to possess sensitivity and 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, concern from others leading to health care intervention, and stories of diagnostic delays, inaccuracies, and dismissal of parental knowledge. Through multivariate analysis (in progress), these themes will be linked to the significant predictors and instrument scores, including family functioning, from the original study.

Parental responses document that professional knowledge of NF is often inadequate or inaccurate in providers. This data supports collaborative parent provider relationships, and may provide beginning evidence supporting future interventions which improve the quality of life for families with NF.

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