Ignite Creation Date:
2024-05-06 @ 3:03 AM
Last Modification Date:
2024-10-26 @ 11:27 AM
Study NCT ID:
NCT02194725
Status:
COMPLETED
Last Update Posted:
2018-04-05
First Post:
2014-07-16
Brief Title:
Where Does Hope Fit In The Relationship Between Hope Uncertainty and Coping Efficacy in Mothers of Children With DuchenneBecker Muscular Dystrophy
Sponsor:
National Human Genome Research Institute NHGRI
Organization:
National Institutes of Health Clinical Center CC
Study Overview
Official Title:
Where Does Hope Fit In The Relationship Between Hope Uncertainty and Coping Efficacy in Mothers of Children With DuchenneBecker Muscular Dystrophy
Status:
COMPLETED
Status Verified Date:
2017-07-07
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
- Children with DuchenneBecker Muscular Dystrophy DBMD slowly lose muscle function They usually die at a young age Some mothers adapt to the demands of caring for a child with this disease better than others Studies show that a person s hope may positively affect how they cope and adapt Researchers want to find out more about this They want to develop ways to improve caregivers overall wellness
Objective
- To study the relationships between uncertainty hope and coping ability in mothers of children with DBMD
Eligibility
- Women in the United States 18 years and older They must be biological mothers of a living child with DBMD and be able to answer a survey in English
Design
This study is part of a larger study that examines the well-being of mothers with sons who have DBMD
Participants will take a questionnaire The questionnaire can be done on paper or on a computer It will take 30 45 minutes to complete
The questionnaire will include basic demographic questions about the participant and the child There will also be questions about how the participant copes with the stress and uncertainty of DBMD
For most of the questions participants will rate their feelings on a scale There will also be four open-ended questions
- Children with DuchenneBecker Muscular Dystrophy DBMD slowly lose muscle function They usually die at a young age Some mothers adapt to the demands of caring for a child with this disease better than others Studies show that a person s hope may positively affect how they cope and adapt Researchers want to find out more about this They want to develop ways to improve caregivers overall wellness
Objective
- To study the relationships between uncertainty hope and coping ability in mothers of children with DBMD
Eligibility
- Women in the United States 18 years and older They must be biological mothers of a living child with DBMD and be able to answer a survey in English
Design
This study is part of a larger study that examines the well-being of mothers with sons who have DBMD
Participants will take a questionnaire The questionnaire can be done on paper or on a computer It will take 30 45 minutes to complete
The questionnaire will include basic demographic questions about the participant and the child There will also be questions about how the participant copes with the stress and uncertainty of DBMD
For most of the questions participants will rate their feelings on a scale There will also be four open-ended questions
Detailed Description:
The proposed study aims to examine the relationships between maternal uncertainty hope and coping efficacy in mothers of children with DuchenneBecker Muscular Dystrophy DBMD DBMD is described as a complex chronic condition causing challenges exemplified by both chronic and terminal illnesses Parental adaptation to a child s DBMD diagnosis is multifaceted due to the evolution of the disease and uncertain timing of the progressive losses the child and family face In addition to prognostic uncertainty associated with DBMD there is uncertainty about the management of the condition future and reproductive planning the family s social connections and the existential meaning of the child s life It is not fully understood how mothers of children with DBMD appraise cope with and ultimately adapt to their child s condition in light of this uncertainty While high degrees of perceived uncertainty may be seen as a threat to coping and adaptation there is evidence that caregivers may find benefits in uncertainty The theoretical literature suggests that a person s hope may influence the appraisal of uncertainty as well as have therapeutic value in positively affecting coping and ultimately adaptation This study s conceptual framework is based on an integrated model from Lazarus and Folkman s Transactional Model of Stress and Coping Mishel s Perceived Uncertainty in Illness Theory and Dufault and Martocchio s Model of Hope The proposed study uses a cross-sectional research design to explore the relationships between maternal uncertainty hope and coping efficacy and is nested within a larger longitudinal study designed to examine the predictors of wellbeing among mothers of boys with DBMD In addition open-ended questions will be used to describe the uncertainty the mothers perceive and the impact uncertainty has had on their life Participants were recruited through the DuchenneConnect registry Parent Project Muscular Dystrophy PPMD and Cincinnati Children s Hospital Medical Center Neuromuscular Clinic Additional mothers will be recruited through the DuchenneConntect registry PPMD and the Muscular Dystrophy Association
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
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 |
|---|---|---|---|
| 14-HG-N149 | None | None | None |