The Role of Uncertainty in Coping: The Experience of Parents of Children With Undiagnosed Medical Conditions
2 other identifiers
observational
168
1 country
1
Brief 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.
Trial Health
Trial Health Score
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participants targeted
Target at P50-P75 for all trials
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Trial Relationships
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Study Timeline
Key milestones and dates
Study Start
First participant enrolled
June 12, 2013
CompletedPrimary Completion
Last participant's last visit for primary outcome
June 12, 2013
CompletedFirst Submitted
Initial submission to the registry
July 18, 2013
CompletedFirst Posted
Study publicly available on registry
July 23, 2013
CompletedApril 24, 2026
July 2, 2025
Same day
July 18, 2013
April 23, 2026
Conditions
Keywords
Outcome Measures
Primary Outcomes (3)
A
To assess the dimensions of perceived uncertainty and their relative importance among parents of children with undiagnosed medicalconditions.
Enrollment
B
To assess the role of uncertainty in predicting coping efficacy among parents of children with undiagnosed medical conditions.
Enrollment
C
To determine whether tolerance for uncertainty and optimism moderate the relationship between uncertainty and coping efficacy.
Enrollment
Study Arms (1)
Parent
Persons aged 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.
Eligibility Criteria
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.
Contact the study team to discuss eligibility requirements. They can help determine if this study is right for you.
Sponsors & Collaborators
Study Sites (1)
National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
Bethesda, Maryland, 20892, United States
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Ellen F Macnamara
National Human Genome Research Institute (NHGRI)
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- CROSS SECTIONAL
- Sponsor Type
- NIH
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
July 18, 2013
First Posted
July 23, 2013
Study Start
June 12, 2013
Primary Completion
June 12, 2013
Last Updated
April 24, 2026
Record last verified: 2025-07-02