The Role of Uncertainty in Coping: The Experience of Parents of Children With Undiagnosed Medical Conditions
|ClinicalTrials.gov Identifier: NCT01905865|
Recruitment Status : Completed
First Posted : July 23, 2013
Last Update Posted : December 23, 2019
- 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.
- To understand how having a child with an undiagnosed illness affects the way their parents think they can cope.
- 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.
- 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|
|Study Type :||Observational|
|Actual Enrollment :||168 participants|
|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|
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.
- A [ Time Frame: Enrollment ]To assess the dimensions of perceived uncertainty and their relative importance among parents of children with undiagnosed medicalconditions.
- B [ Time Frame: Enrollment ]To assess the role of uncertainty in predicting coping efficacy among parents of children with undiagnosed medical conditions.
- C [ Time Frame: Enrollment ]To determine whether tolerance for uncertainty and optimism moderate the relationship between uncertainty and coping efficacy.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01905865
|United States, Maryland|
|National Human Genome Research Institute (NHGRI), 9000 Rockville Pike|
|Bethesda, Maryland, United States, 20892|
|Principal Investigator:||Ellen F Macnamara||National Human Genome Research Institute (NHGRI)|