Internet Support Group for Parents of a Child With Neurofibromatosis Type 1
Condition: Neurofibromatosis 1
MeSH terms: Neurofibromatoses; Neurofibromatosis 1; Neurofibroma
Study type: Observational

Summary: 
      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.
    

Detailed description: 
      BACKGROUND:

        -  The complex symptom profile in NF1 puts children and adolescents with this condition at
           risk for a variety of physical, cognitive, and social-emotional difficulties. Thus,
           caring for a child with a chronic medical condition such as NF1 can be challenging.

        -  Over the last two decades, researchers have been examining the use of internet support
           groups (ISGs) as a means of connecting individuals with similar conditions, diagnoses,
           or challenges to provide emotional and informational support.

        -  While the benefits of ISGs have been well documented in many studies of medical
           patients, very few have examined the use of ISGs in parents of children with chronic
           medical conditions. Further, no studies have been conducted on an ISG in parents of a
           child with NF1.

      OBJECTIVES:

        -  The primary objective of this pilot study is to assess the effectiveness of an ISG
           designed for parents of children with NF1 on a measure of perceived social support.

        -  Secondary objectives are to assess effects of the ISG on self-efficacy, depression, and
           anxiety, and to explore themes and topics discussed in the ISG.

      ELIGIBILITY:

      Eligible participants must self-report:

        -  Being greater than or equal to 18 years of age

        -  Having a child with a diagnosis of NF1 between 0 and 25 years of age

        -  Living in the same home as the child with NF1

             -  Having regular access to a computer with internet capability

      DESIGN:

        -  Parents of children with NF1 will be recruited through Dr. Widemann s NF1 patient
           database and through the Children s Tumor Foundation s (CTF) NF registry.

        -  Eligible participants will be emailed a link to access the study website through the CTF
           website. Due to the nature of the study, consent will be obtained online.

        -  After consenting, participants will be administered (electronically) baseline measures
           of perceived social support, self-efficacy, depression, and anxiety. After 8 weeks,
           participants will complete the measures again via the same website, as well as a
           post-study questionnaire assessing their experiences with participation. Measures will
           be repeated at 3-months post-intervention.

        -  Content analyses will be performed to identify themes and needs of the participants
    

Observational model: Cohort
Time perspective: Prospective
Keywords: Children's Tumor Foundation; Social Support; Online; Anxiety; Depression