Factors perceived to influence parental decision-making regarding presymptomatic testing of children at risk for treatable adult-onset genetic disorders

Issues Compr Pediatr Nurs. 1998 Jan-Mar;21(1):19-34. doi: 10.1080/01460869808951125.

Abstract

The purpose of this study was to identify those critical factors that genetic nurse experts perceived could influence parental decision-making to seek or to reject presymptomatic testing of their children at risk for treatable adult-onset genetic disorders (neurofibromatosis 2, familial adenomatous polyposis, and von Hippel Lindeau disorder). Perceptions of ISONG genetic nurse specialists were surveyed through a modified Delphi technique and four major themes emerged: personal experience with severity of genetic disorder, receiving accurate information from credible sources, availability of quality treatment, and risk perception. Currently, there is a paucity of extant research that identifies critical factors influencing parental decision-making about this relatively new testing alternative for children. Thus, these experts are an important source of valuable information needed to identify such factors. Findings may be useful to design a qualitative study with parents to investigate this issue.

MeSH terms

  • Adult
  • Age of Onset
  • Attitude of Health Personnel*
  • Child
  • Decision Making*
  • Delphi Technique
  • Female
  • Genetic Diseases, Inborn / diagnosis*
  • Genetic Testing / psychology*
  • Humans
  • Male
  • Mass Screening / psychology*
  • Middle Aged
  • Nurse Clinicians / psychology*
  • Parents / psychology*
  • Patient Acceptance of Health Care / psychology*
  • Surveys and Questionnaires