Ignite Creation Date:
2024-05-06 @ 1:48 AM
Last Modification Date:
2024-10-26 @ 11:10 AM
Study NCT ID:
NCT01905865
Status:
COMPLETED
Last Update Posted:
2024-07-15
First Post:
2013-07-18
Brief Title:
The Role of Uncertainty in Coping The Experience of Parents of Children With Undiagnosed Medical Conditions
Sponsor:
National Human Genome Research Institute NHGRI
Organization:
National Institutes of Health Clinical Center CC
Study Overview
Official Title:
The Role of Uncertainty in Coping Efficacy The Experience of Parents of Children With Undiagnosed Medical Conditions
Status:
COMPLETED
Status Verified Date:
2024-08-16
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief 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
- 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:
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 Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None
Secondary IDs
| Secondary ID | Type | Domain | Link |
|---|---|---|---|
| 13-HG-N162 | None | None | None |