Genetic Counseling Program

Untitled Document

Development of a Female Adolescent Sibling Support Group.  By Katie Fritinger

Introduction:  When a child is diagnosed with a chronic illness or disability the whole family is affected. Although the child with special needs may receive much attention and intervention to help adjust to life with special needs, the unaffected child may be overlooked or not receive the services they need to cope with the many issues of having a sibling who is sick or disabled. The purpose of this study was to provide a positive environment for adolescent girls to discuss the rewards and challenges of having a sibling with special needs while helping them cope with their family situation. The specific aims of the study was to develop a support group for girls in the fifth to ninth grade who have siblings with special needs and evaluate the need for this particular type of group. The adolescent female sibling support group was called Girls Appreciating Loved Siblings or GALS for short. Methods:  The participants were recruited from a previously established sibling support group called Sibshops.  GALS consisted of five meeting times from November 4, 2005 through March 10, 2006.  A list of questions were discussed and recorded by audiotape at the first and fifth GALS sessions to gather information about the strengths and weaknesses of the GALS program, to identify any changes in the participants' behavior and involvement in the group, and major themes that were discussed by the participants. Reflection statements were written after the second, third, and fourth GALS session and for each Sibshop session about the participants that attended both GALS and Sibshops. These reflective statements and transcripts of the first and fifth GALS sessions were reviewed independently and then collectively by the committee members of this study to identify major themes discussed during GALS, differences between level of involvement by the participants in GALS and Sibshops, and general changes in the participants' willingness to discuss difficult topics.  Results:  The participants found the physical activities the most enjoyable of all the activities. The creative and artistic activities were also among the favorite activities at GALS. The combination of activities and discussion pieces were the most successful. The participants reported that sibling support group sessions that mainly focused on discussion without physical activities were the least liked type of session.  Participant involvement and willingness to discuss their sibling with special needs increased over time. Major differences were found between the amount and level of discussion between the first and fifth GALS sessions. The major themes identified from transcriptions and reflection statements included judgment, fear, jealousy, avoidance, caregiving responsibilities, and desire for more attention from parents.  The differences found between GALS and Sibshops was the males tended to dominate the conversation and participate more in the Sibshop sessions compared to the females. While the length and depth of the conversations did not differ between GALS and Sibshops, the females' involvement in the discussion at GALS was higher compared to their involvement at Sibshops. Individual changes in the female participants' willingness to discuss their sibling with special needs happened more frequently at GALS than at Sibshops. The older females at GALS had a higher level of participation in the activities and discussion pieces compared to the younger females.

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  • "UNCG is a great fit for me. The program directors have extensive experience in the world of genetic counseling and provide you with opportunities to work with some of the best medical centers in the country. Our location allows us to have expert guest lecturers, many of whom you also get to work alongside or observe in your clinical rotations in your second year. We also have some really wonderful and unique opportunities as a part of this program: we observe in syndrome specific support groups and clinics, tour genetic laboratories, and are matched with a family with a genetic disease to learn what it is like to live with a genetic condition. Finally, our directors are genuinely invested in each of us, and care about our success and getting to know each of us personally."




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