The Role of Family Functioning in Promoting Adaptation in Siblings of Individuals With Duchenne Muscular Dystrophy (DMD)
| Status: | Terminated |
|---|---|
| Conditions: | Neurology, Women's Studies |
| Therapuetic Areas: | Neurology, Reproductive |
| Healthy: | No |
| Age Range: | 13 - Any |
| Updated: | 4/6/2019 |
| Start Date: | June 7, 2011 |
| End Date: | January 7, 2016 |
Background:
We want to learn more about the relationship between the way families function and how
children adapt to having a sibling with Duchenne muscular dystrophy (DMD). What we learn will
help us design better interventions for families.
Objective:
- To learn more about how families with an individual with DMD function.
- To learn how siblings adapt in families with an individual with DMD.
Eligibility:
- One parent and one child, age 13-18, from a family where another child has DMD.
- The parent and the child must be able to read and write English.
Design:
- One parent from each family will complete a survey about how family members communicate
and relate with each other. The parent will also answer questions about the behavior of
the child without DMD. This survey will take you about 40 minutes to complete.
- One child from each family, either a boy or a girl, will also complete a survey. This
survey asks about how he/she views him/herself. It also asks about how he/she interacts
with peers and family members and how he/she behaves. The survey also asks how satisfied
he/she is with how his/her family functions. This survey takes about 30 minutes to
finish....
We want to learn more about the relationship between the way families function and how
children adapt to having a sibling with Duchenne muscular dystrophy (DMD). What we learn will
help us design better interventions for families.
Objective:
- To learn more about how families with an individual with DMD function.
- To learn how siblings adapt in families with an individual with DMD.
Eligibility:
- One parent and one child, age 13-18, from a family where another child has DMD.
- The parent and the child must be able to read and write English.
Design:
- One parent from each family will complete a survey about how family members communicate
and relate with each other. The parent will also answer questions about the behavior of
the child without DMD. This survey will take you about 40 minutes to complete.
- One child from each family, either a boy or a girl, will also complete a survey. This
survey asks about how he/she views him/herself. It also asks about how he/she interacts
with peers and family members and how he/she behaves. The survey also asks how satisfied
he/she is with how his/her family functions. This survey takes about 30 minutes to
finish....
This study proposes to explore the role of family functioning in promoting adaptation in
unaffected siblings of children with Duchenne muscular dystrophy (DMD). Although evidence
suggests that family functioning may be a predictor of adaptation in caregivers of children
with chronic illnesses, little research has been conducted on the relationships between
aspects of family functioning and the adaptation of unaffected siblings. Evidence in the
literature suggests that aspects of family functioning may play a key role in adaptation.
Moreover, the role of DMD-specific communication in facilitating sibling adaptation has not
yet been explored in the literature and further insight may be derived from exploring this
relationship. The goals of this study are to better understand the relationship of family
functioning with the adaptation of unaffected siblings, as well as to explore the timing,
extent (depth and content), and the characteristics of initiation of discussion of
parent-sibling communication around DMD. Currently, some evidence exists to direct the
creation of interventions that reinforce a family-centered approach to facilitate adaptation
of family members to living with a child with a chronic health condition. Nevertheless, more
insight is needed to understand how family processes affect individual adaptation, especially
that of the unaffected sibling, in order to maximize the effectiveness of future
interventions with this population.
unaffected siblings of children with Duchenne muscular dystrophy (DMD). Although evidence
suggests that family functioning may be a predictor of adaptation in caregivers of children
with chronic illnesses, little research has been conducted on the relationships between
aspects of family functioning and the adaptation of unaffected siblings. Evidence in the
literature suggests that aspects of family functioning may play a key role in adaptation.
Moreover, the role of DMD-specific communication in facilitating sibling adaptation has not
yet been explored in the literature and further insight may be derived from exploring this
relationship. The goals of this study are to better understand the relationship of family
functioning with the adaptation of unaffected siblings, as well as to explore the timing,
extent (depth and content), and the characteristics of initiation of discussion of
parent-sibling communication around DMD. Currently, some evidence exists to direct the
creation of interventions that reinforce a family-centered approach to facilitate adaptation
of family members to living with a child with a chronic health condition. Nevertheless, more
insight is needed to understand how family processes affect individual adaptation, especially
that of the unaffected sibling, in order to maximize the effectiveness of future
interventions with this population.
- INCLUSION CRITERIA:
Parents/Caregivers:
- Parent or caregiver of child with DMD and child without DMD
- Lives with child that does not have DMD
- 18 or older
- Reads/Writes English
Siblings:
- Sibling of child with DMD
- Lives in same household as individual with DMD
- 13-18 years of age
- Reads/Writes English
We found this trial at
1
site
9000 Rockville Pike
Bethesda, Maryland 20892
Bethesda, Maryland 20892
Click here to add this to my saved trials
