The Role of Uncertainty in Coping: The Experience of Parents of Children With Undiagnosed Medical… (NCT01905865) | Clinical Trial Compass
CompletedNot Applicable
The Role of Uncertainty in Coping: The Experience of Parents of Children With Undiagnosed Medical Conditions
United States168 participantsStarted 2013-06-12
Plain-language summary
Background:
\- Parents of a child with an undiagnosed medical condition face a lot of uncertainty. They may not know how to take care of their child or how the illness will affect their family life. Researchers want to study how these parents cope with and adapt to their child s condition in light of this uncertainty. Being uncertain can make it hard for parents to adapt. But it also might give them hope. Researchers want to study how uncertain the parents think their situation is and how that affects the way they think they can cope. Personality traits, like being able to handle uncertainty and being resilient, might also affect coping.
Objectives:
\- To understand how having a child with an undiagnosed illness affects the way their parents think they can cope.
Eligibility:
\- Adults with a child who has a medical condition that has not been diagnosed for at least 2 years and involves at least 2 parts of the body.
Design:
* Participants will answer survey questions for about 30 minutes. The questions are about their thoughts and feelings about having a child with an undisclosed illness.
* Participants can take the survey on paper or online.
Who can participate
Age range
18 Years – 115 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
* Participants for this study will be English speaking men and women ages 18 years or older who have a child with an undiagnosed medical condition who have applied to the Undiagnosed Diseases Network, and have been assigned to the NIH.
The participant may be the adoptive or biological parent.
Parents may decide between themselves who will complete the survey as only one survey per household will be allowed.
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1This study is listed as completed — has any research been published from it, and could you help me understand what it found about how parents cope with having a child with an undiagnosed condition?
2Since this study focuses on the emotional experience of uncertainty rather than testing a medical treatment, would participating in something like this — or its findings — actually help us navigate the diagnostic process we're going through with our child?
3The trial involves parents of children with undiagnosed medical conditions — does our situation fit the kind of families this research was designed to study, and are there similar ongoing studies we might still be able to participate in?
4Are there support resources, counselors, or programs connected to undiagnosed disease research — like those at the Undiagnosed Diseases Network — that you'd recommend we look into alongside pursuing a diagnosis?
5While we're waiting for answers about our child's condition, what strategies do you typically suggest for managing the stress and uncertainty that this kind of study was trying to understand?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
A
Timeframe: Enrollment
2
B
Timeframe: Enrollment
3
C
Timeframe: Enrollment
Trial details
NCT IDNCT01905865
SponsorNational Human Genome Research Institute (NHGRI)