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

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

168 participants

Study Classification

OBSERVATIONAL

Study Start Date

2013-06-12

Brief Summary

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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.

Detailed Description

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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.

Conditions

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Undiagnosed Disease

Keywords

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Undiagnosed Medical Conditions Natural History

Study Design

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Observational Model Type

COHORT

Study Time Perspective

CROSS_SECTIONAL

Study Groups

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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.

No interventions assigned to this group

Eligibility Criteria

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Inclusion 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.

Minimum Eligible Age

18 Years

Maximum Eligible Age

115 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Ellen F Macnamara

Role: PRINCIPAL_INVESTIGATOR

National Human Genome Research Institute (NHGRI)

Locations

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National Human Genome Research Institute (NHGRI), 9000 Rockville Pike

Bethesda, Maryland, United States

Site Status

Countries

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United States

Other Identifiers

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13-HG-N162

Identifier Type: -

Identifier Source: secondary_id

999913162