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The Experience of Uncertainty in Parents of Children With an Undiagnosed Medical Condition

NCT00955370 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 500

Last updated 2017-07-02

No results posted yet for this study

Summary

Background:

* Rare and undiagnosed conditions are often chronic and disabling, with symptoms affecting different organ systems at various levels of severity. Perhaps the most challenging feature of an undiagnosed medical condition that has lasted 2 or more years is its characteristic uncertainty. In the absence of a diagnosis, health care professionals can provide only limited treatment and prognostic information.
* In the case of a child with an undiagnosed condition, the uncertainty that accompanies what is often a chronic, debilitating medical condition and an undefined prognosis may have physical, psychological, social, and spiritual implications for the entire family. Research suggests that parents of a child with an undiagnosed medical condition may be at significantly increased risk of anxiety, depression, poor health, and overall lower quality of life.
* It is not well understood how individuals cope with and adapt to chronic uncertainty, and the factors that influence this process. To design future interventions, descriptive studies are needed to reveal predictors that can be manipulated to improve outcomes.

Objectives:

* To examine whether perceptions of uncertainty, and perceived personal control, are associated with coping and adaptation.
* To examine how the length of time elapsed since child was identified as sick and perceptions of uncertainty affect coping and adaptation.
* To assess how perceptions of uncertainty, time elapsed since child became sick, optimism, and perceived personal control affect coping and adaptation.

Eligibility:

* Parents (older than 18 years of age) of children who have an undiagnosed medical condition.
* Participants must have a working e-mail address or fixed postal address.

Design:

* Parents will be recruited from Web-based support networks for parents of undiagnosed children through Web site postings, electronic mailing lists, and printed newsletter postings.
* Participants will be asked to complete a questionnaire about their experiences in living with a child who has an undiagnosed but chronic medical condition. The main outcome variable is adaptation to living with one's child's undiagnosed medical condition.
* Participants have the option to complete an online or paper version of the questionnaire. The questionnaire should take between 20 and 30 minutes to complete.
* No medical treatments are specifically offered as a part of this study.

Conditions

  • Multiple Abnormalities

Sponsors & Collaborators

  • National Human Genome Research Institute (NHGRI)

    lead NIH

Principal Investigators

  • Barbara B Biesecker · National Human Genome Research Institute (NHGRI)

Eligibility

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

Timeline & Regulatory

Start
2009-08-04
Completion
2012-04-10

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 NCT00955370 on ClinicalTrials.gov