Uncertainty, Coping, and Family Functioning in Parents of Children With Neurofibromatosis 1: A Path Analytic Study

Paper

Friday, July 23, 2004

This presentation is part of : Family Health With Special Needs Children

Ann M. Dylis, PhD, RN, School of Nursing, Bouve College of Health Sciences, School of Nursing, Bouve College of Health Sciences, Northeastern University, Boston, MA, USA

Learning Objective #1: Describe significant predictors of family functioning in an international sample of parents of children with neurofibromatosis 1
Learning Objective #2: Describe methodologic strategies used to internationally recruit parents through the community of neurofibromatosis organizations

Significance: Neurofibromatosis 1 (NF) is an autosomal dominant genetic disorder characterized by much variability in its physical and behavioral manifestations. Contextual stressors influence parents of children with NF, but prior research has not examined if relationships exist among these factors.

Purpose: The purpose of the study was to test a proposed causal model that explicated direct and indirect relationships among personal and environmental characteristics, uncertainty, uncertainty stress, and parental coping on family functioning in parents of children with NF. Lazarus and Folkman’s (1984) Model of Stress, Appraisal, and Coping served as the Theoretical Framework.

Design: A descriptive-exploratory design, using multiple regression, tested the proposed model via a path analysis.

Methods: A convenience sample of international parents (N = 201), recruited through print and internet media of four NF organizations, completed a researcher constructed personal information sheet and valid and reliable measures of uncertainty, uncertainty stress, parental coping, and family functioning.

Results: The final causal model, trimmed of non-significant paths, explained 29% of the variance in family functioning. Significant direct effects existed between family functioning and both parental coping and uncertainty stress. Significant indirect effects on family functioning existed between parent gender, through parental coping, and perceived severity, through uncertainty stress. Lower uncertainty stress and higher coping scores predicted higher family functioning. Younger mothers, who perceived their recently diagnosed children as more severely affected, had the highest uncertainty stress.

Conclusions/Implications: Differences in parental gender, parental perception of the child’s NF severity, coping, and uncertainty stress were contextual factors that effected family functioning scores. Family functioning and coping means were significantly lower than those reported in published norms and in other nursing studies. Additional between and within group studies, including analysis of dyadic data and responses over time, are suggested to promote individualized nursing interventions aimed at optimum parental and family functioning.

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