Clinical Trial Details
— Status: Completed
Administrative data
| NCT number |
NCT01905865 |
| Other study ID # |
999913162 |
| Secondary ID |
13-HG-N162 |
| Status |
Completed |
| Phase |
|
| First received |
|
| Last updated |
|
| Start date |
June 12, 2013 |
Study information
| Verified date |
January 23, 2024 |
| Source |
National Institutes of Health Clinical Center (CC) |
| Contact |
n/a |
| Is FDA regulated |
No |
| Health authority |
|
| Study type |
Observational
|
Clinical Trial 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.
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.
