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The Role of Uncertainty in Coping: The Experience of Parents of Children With Undiagnosed Medical Conditions

NCT01905865 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 168

Last updated 2026-05-14

No results posted yet for this study

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.

Conditions

  • Undiagnosed Disease

Sponsors & Collaborators

  • University of Virginia

    collaborator OTHER

  • National Human Genome Research Institute (NHGRI)

    lead NIH

Principal Investigators

  • Ellen F Macnamara · National Human Genome Research Institute (NHGRI)

Eligibility

Min Age
18 Years
Max Age
115 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2013-06-12
Primary Completion
2013-06-12

Countries

  • United States

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT01905865 on ClinicalTrials.gov