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

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ClinicalTrials.gov Identifier: NCT01905865
Recruitment Status : Completed
First Posted : July 23, 2013
Last Update Posted : December 23, 2019
Sponsor:
Collaborator:
University of Virginia
Information provided by (Responsible Party):
National Institutes of Health Clinical Center (CC) ( National Human Genome Research Institute (NHGRI) )

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.

Condition or disease
Undiagnosed Disease

Detailed Description:
The proposed study aims to test the effect of the degree of perceived uncertainty on coping efficacy among parents of children with undiagnosed medical conditions. There are many dimensions to uncertainty when there is no identified cause for a condition that affects one s child. They include illness identity, management, longevity and life planning, the meaning of the child s condition for the family and both the child s and the family s social connections. How parents of children with undiagnosed medical conditions appraise, cope and ultimately adapt to their child s condition in light of this uncertainty is largely unexplored. While high levels of perceived uncertainty may be seen as a threat to adaptation, there is evidence that parents find hope and opportunity in the uncertainty. The literature suggests that many factors affect how uncertainty is appraised, and higher levels of coping self-efficacy are associated with more effective coping and ultimately better adaptation. There is no research that systematically assesses the dimensions of uncertainty perceived by parents and whether overall perceptions of uncertainty or particular subsets are associated with coping efficacy. Further, personality traits, such as tolerance of uncertainty and resilience, may moderate these unexplored relationships. This study s conceptual framework is based on Lazarus and Folkman s Transactional Model of Stress and Coping and Mishel s Perceived Uncertainty in Illness Theory. A cross-sectional survey design will be used to quantitatively assess the relationships between dimensions of uncertainty and coping efficacy. Participants will be recruited through online support groups, website postings, and listservs. They will have the option of completing either a paper or online version of the survey.

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Study Type : Observational
Actual Enrollment : 168 participants
Observational Model: Cohort
Time Perspective: Cross-Sectional
Official Title: The Role of Uncertainty in Coping Efficacy: The Experience of Parents of Children With Undiagnosed Medical Conditions
Study Start Date : June 12, 2013
Actual Primary Completion Date : June 12, 2013
Actual Study Completion Date : June 12, 2013

Group/Cohort
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.



Primary Outcome Measures :
  1. A [ Time Frame: Enrollment ]
    To assess the dimensions of perceived uncertainty and their relative importance among parents of children with undiagnosed medicalconditions.

  2. B [ Time Frame: Enrollment ]
    To assess the role of uncertainty in predicting coping efficacy among parents of children with undiagnosed medical conditions.

  3. C [ Time Frame: Enrollment ]
    To determine whether tolerance for uncertainty and optimism moderate the relationship between uncertainty and coping efficacy.



Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.


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Ages Eligible for Study:   18 Years to 150 Years   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
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.
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.

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.


Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01905865


Locations
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United States, Maryland
National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
Bethesda, Maryland, United States, 20892
Sponsors and Collaborators
National Human Genome Research Institute (NHGRI)
University of Virginia
Investigators
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Principal Investigator: Ellen F Macnamara National Human Genome Research Institute (NHGRI)
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Responsible Party: National Human Genome Research Institute (NHGRI)
ClinicalTrials.gov Identifier: NCT01905865    
Other Study ID Numbers: 999913162
13-HG-N162
First Posted: July 23, 2013    Key Record Dates
Last Update Posted: December 23, 2019
Last Verified: December 20, 2018
Keywords provided by National Institutes of Health Clinical Center (CC) ( National Human Genome Research Institute (NHGRI) ):
Undiagnosed Medical Conditions
Additional relevant MeSH terms:
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Disease
Pathologic Processes