Clinical Trial: Internet Support Group for Parents of a Child With Neurofibromatosis Type 1

Study Status: Completed
Recruit Status: Completed
Study Type: Observational

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

Brief 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 exper

    Detailed Summary:

    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

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      Sponsor: National Cancer Institute (NCI)

      Current Primary Outcome: ISG effects on perceived support [ Time Frame: 3 months ]

      Original Primary Outcome: Same as current

      Current Secondary Outcome:

      • ISG effects on depression and anxiety [ Time Frame: 3 months ]
      • Identify themes and needs of chat room support [ Time Frame: 2 years ]


      Original Secondary Outcome: Same as current

      Information By: National Institutes of Health Clinical Center (CC)

      Dates:
      Date Received: May 31, 2014
      Date Started: May 14, 2014
      Date Completion:
      Last Updated: April 21, 2017
      Last Verified: March 2, 2017