Genetic Counseling

School of Health and Human Sciences

Amy Furches BlevinsAssessment and Resource Development for the NC Neurofibromatosis Support Group
 
Capstone Project Committee: 
Sonja Eubanks, MS, CGC, Sat Gupta, PhD (Statistical Consultant), Megan Mortensen, MS, CGC, Suresh Nagappan, MD, Pamela Reitnauer, MD, PhD, MPH
 
Background:
The purpose of this study was to determine, with the use of a needs assessment survey, the support needs of individuals in North Carolina with neurofibromatosis (NF) and their family members. Methods: Participants were recruited through e-mails sent to members of the Children’s Tumor Foundation and NF Inc., and at a NF symposium at Duke University. Results: The majority of participants indicated that they would be interested in attending face-to-face meetings of the group. Participants showed interest in resources such as educational and developmental resources, activities such as NF conferences and symposiums, and small group discussions. They were also interested receiving advice from other parents and discussion of certain topics such as research updates and coping with NF. Conclusions: By analyzing the data that was obtained from the needs assessment, interviewing leaders from CTF and NF Inc. and reviewing the literature on group implementation and maintenance, recommendations were made for development of the NC NF support group.
 
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