Genetic Counseling

School of Health and Human Sciences

Katie GarbariniA Needs Assessment for the Development of a Hereditary Breast Cancer Support Group in Greensboro, North Carolina
Capstone Committee: Gustav Magrinat, MD, Karen Powell, MS, CGC, Scott Richter, PhD (Statistical Consultant), Randi Stewart, MS, CGC, Melissa Vogelsinger
Background: Individuals with hereditary breast cancer have unique support and informational needs. Literature has shown that individuals at increased risk of breast cancer have interest in support group participation.

Purpose: The goal of this study is to assess and describe the need for a support group for patients with a hereditary breast cancer syndrome in order to inform the creation of a sustainable local support group.

Methods: An anonymous survey was mailed to individuals with a hereditary breast cancer syndrome in the Cone Cancer Center patient population to gauge interest in a face-to-face support group, desired topics and activities, and logistical preferences. The survey responses were analyzed using descriptive statistics and chi-square analysis. Qualitative survey responses were coded by two investigators.

Results: Forty-five percent of participants reported personal interest in attending a face-to-face hereditary cancer support group (n=10). The majority of participants preferred for the group to meet at a hospital location (45%) in the evening (55%), once a month (64%), in a small group format of 10 individuals or less (55%), facilitated by a health care professional (64%). Most participants expressed interest in hearing about personal experiences of other individuals and giving and receiving emotional support.

Conclusion: This study suggests that needs and preferences are varied among women with a hereditary breast cancer syndrome and there are also unmet support needs among family members. Most respondents with breast cancer were diagnosed 1-5 years ago and needs have been found to change with time. The results of this study should be incorporated into the planning of hereditary breast cancer support groups or subgroups in Greensboro, North Carolina.
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