The Role of Uncertainty in Coping: The Experience of Parents of Children With Undiagnosed Medical Conditions
Undiagnosed Disease
What this study involves
The registry does not currently label this study as recruiting. Ask about its status before planning a screening visit.
- Study type
- Observational
- Phase
- Not applicable / not listed
- Age range
- 18 years - 115 years
- Sex eligible
- All sexes
- Healthy volunteers
- Not accepted
- Participants
- 168 Actual
These are starting points, not an eligibility decision. The research team must review the full requirements.
About the research
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.
Read the full 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.
Who may be able to participate?
The list below is the sponsor’s full registry wording. It can include conditions, prior treatment, test results and other requirements. A match in search does not mean you qualify.
- 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.
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.
Understand screeningTreatment, groups and participation
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- Assignment
- Not reported
- Masking
- Not reported
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.
What researchers are measuring
Outcome measures describe what is being studied. They are not proof that a treatment works.
Primary measures
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.
Review the complete result tables and limitations in the official record.
Open official results ↗Research locations (1)
The overall study status and a local site’s status can differ. Confirm that location’s availability before traveling.
1 locations
National Human Genome Research Institute (NHGRI), 9000 Rockville PikeBethesda, Maryland, United StatesStatus unknown
Study team and timeline
- Lead sponsor
- National Human Genome Research Institute (NHGRI)
- Study start
- Jun 12, 2013
- Primary completion
- Jun 12, 2013 Actual
- Study completion
- Not reported
- First posted
- Jul 23, 2013 Estimated
- Last updated
- Nov 9, 2026 Actual
Official study contacts
No central contact is listed. Check the locations and the official record.
Official study title
The Role of Uncertainty in Coping Efficacy: The Experience of Parents of Children With Undiagnosed Medical Conditions
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Source: ClinicalTrials.gov API v2. Information is submitted by sponsors and investigators. NLM does not approve the safety or science of all listed studies. Registry disclaimer.
Retrieved: Nov 12, 2026 · Last registry update: Nov 9, 2026