Effects of an Internet Support Group for Parents of a Child With Neurofibromatosis Type 1

Background:

• Studies show that Internet Support Groups (ISGs) can help parents of children with chronic conditions. Researchers want to find out if ISGs can help parents of a child with the genetic disorder Neurofibromatosis Type 1 (NF1).

Objective:

• To see if an ISG for parents with a child with NF1 can give the parents more social support and less anxiety.

Eligibility:

• Adults age 18 and older with a child (age 0 25 years) with NF1.

Design:

• Participants will register for the study on a website hosted by the Children s Tumor Foundation.
• Participants will complete 5 questionnaires. These will be about their emotional well-being, their child s health status, and their contact information.
• The ISG will include a Discussion Forum that participants can enter 24 hours a day, 7 days a week. A professional moderator will post questions and discussion topics. The moderator can also respond to questions. They will be a psychologist, a psychology associate, or a nurse-practitioner. Each one will be highly experienced at working with young people with NF1 and their families.
• The ISG also will contain a chat room. Here participants can chat with other users in real time. The chat room will be open for one 90-minute session per week.
• The ISG will remain open for 8 weeks. Then participants will retake 4 of the questionnaires from the beginning of the study. They will also complete 1 other questionnaire about their experiences with the ISG. Information from any messages participants post on the ISG website will be collected.
• Three months after the ISG closes, participants will complete the questionnaires one final time.