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

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

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.

Study Overview

• Status: Completed
• Conditions: 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.

• Study Type: Observational
• Enrollment (Actual): 168

Contacts and Locations

Study Locations

• United States
  • Maryland
    • Bethesda, Maryland, United States, 20892
      • National Human Genome Research Institute (NHGRI), 9000 Rockville Pike

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• 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.

Description

• 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 Plan

How is the study designed?

Design Details

• Observational Models: Cohort
• Time Perspectives: Cross-Sectional

Number of groups / cohorts

1

Cohorts and Interventions

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.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
A	To assess the dimensions of perceived uncertainty and their relative importance among parents of children with undiagnosed medicalconditions.	Enrollment
B	To assess the role of uncertainty in predicting coping efficacy among parents of children with undiagnosed medical conditions.	Enrollment
C	To determine whether tolerance for uncertainty and optimism moderate the relationship between uncertainty and coping efficacy.	Enrollment

Collaborators and Investigators

• Sponsor: National Human Genome Research Institute (NHGRI)
• Collaborators: University of Virginia
• Investigators: Principal Investigator: Ellen F Macnamara, National Human Genome Research Institute (NHGRI)

Study record dates

Study Major Dates

• Study Start: June 12, 2013
• Primary Completion (Actual): June 12, 2013
• Study Completion: June 12, 2013

Study Registration Dates

• First Submitted: July 18, 2013
• First Submitted That Met QC Criteria: July 18, 2013
• First Posted (Estimated): July 23, 2013

Study Record Updates

• Last Update Posted (Estimated): April 23, 2024
• Last Update Submitted That Met QC Criteria: April 20, 2024
• Last Verified: January 23, 2024

More Information

Terms related to this study

• Keywords: Natural History; Undiagnosed Medical Conditions
• Additional Relevant MeSH Terms: Pathologic Processes; Disease Attributes; Undiagnosed Diseases
• Other Study ID Numbers: 999913162; 13-HG-N162

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No