Where Does Hope Fit In? The Relationship Between Hope, Uncertainty, and Coping Efficacy in Mothers of Children With Duchenne/Becker Muscular Dystrophy
| Status: | Completed |
|---|---|
| Conditions: | Neurology |
| Therapuetic Areas: | Neurology |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 4/17/2018 |
| Start Date: | July 6, 2014 |
| End Date: | July 7, 2017 |
Background:
- Children with Duchenne/Becker 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 Duchenne/Becker 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.
The proposed study aims to examine the relationships between maternal uncertainty, hope, and
coping efficacy in mothers of children with Duchenne/Becker 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.
coping efficacy in mothers of children with Duchenne/Becker 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.
- INCLUSION CRITERIA:
Participants will be biological mothers of a living child with Duchenne or Becker muscular
dystrophy living in the United States, who are 18 years or older and able to answer a
survey in English.
Participants will be asked to disclose their child's diagnosis but no screening evaluation
will be required.
EXCLUSION CRITERIA:
Participants unable to answer a survey in English.
We found this trial at
1
site
9000 Rockville Pike
Bethesda, Maryland 20892
Bethesda, Maryland 20892
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