Internet Support Group for Parents of a Child With Neurofibromatosis Type 1
| Status: | Completed |
|---|---|
| Conditions: | Cancer, Other Indications |
| Therapuetic Areas: | Oncology, Other |
| Healthy: | No |
| Age Range: | 18 - 99 |
| Updated: | 2/2/2019 |
| Start Date: | May 31, 2014 |
| End Date: | January 29, 2019 |
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.
- 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.
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
- 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
- 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.
We found this trial at
1
site
9000 Rockville Pike
Bethesda, Maryland 20892
Bethesda, Maryland 20892
Click here to add this to my saved trials
