Factors perceived to influence parental decision-making regarding presymptomatic testing of children at risk for treatable adult-onset genetic disorders.
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.
Cassidy
D A
DA
Department of Maternal-Child Nursing, Boston College, Chestnut Hill, Massachusetts 02167, USA.
Bove
C M
CM
D000328:Adult; D017668:Age of Onset; D001291:Attitude of Health Personnel; D002648:Child; D003657:Decision Making; D003697:Delphi Technique; D005260:Female; D030342:Genetic Diseases, Inborn / Q000175:diagnosis*; D005820:Genetic Testing / Q000523:psychology*; D006801:Humans; D008297:Male; D008403:Mass Screening / Q000523:psychology*; D008875:Middle Aged; D009720:Nurse Clinicians / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D011795:Surveys and Questionnaires