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.

Sex

All

Minimum age

18 Years

Maximum age

99 Years

* ELIGIBILITY CRITERIA

INCLUSION CRITERIA FOR PARENT PARTICPANT:

Participants must self-report being the primary caregiver of one or more children ages 0 to 25 with a confirmed diagnosis of NF1.

Participants must report being at least 18 years of age.

Participants must report living in the same home as the child(ren) with NF1 a majority of the time.

Participants must report having regular access to a computer and internet connection.

Participants will indicate they do not have any plans to start any other internet support group for parents of children with NF during the study time period.

Participants must have the ability to read and communicate in the English language.

Participants must have the ability to understand and the willingness to provide an online informed consent document.

EXCLUSION CRITERIA FOR PARENT PARTICIPANT:

Although individuals will be allowed to participate if they currently are part of another internet forum for NF, they will be excluded if they report they plan to start a new internet support group during the study period.