The Role of Family Functioning in Promoting Adaptation in Siblings of Individuals With Duchenne Muscular Dystrophy (DMD)

This study has been completed.
Sponsor:
Information provided by:
National Institutes of Health Clinical Center (CC)
ClinicalTrials.gov Identifier:
NCT01386515
First received: June 30, 2011
Last updated: March 14, 2014
Last verified: February 2014
  Purpose

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.

Condition
Genetic Disease
Communication

Study Type: Observational
Official Title: The Role of Family Functioning in Promoting Adaptation in Siblings of Individuals With Duchenne Muscular Dystrophy (DMD)

Resource links provided by NLM:


Further study details as provided by National Institutes of Health Clinical Center (CC):

Primary Outcome Measures:
  • adaptation, behavior problems, self-concept, pro-social behavior

Estimated Enrollment: 200
Study Start Date: June 2011
Detailed Description:

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.

  Eligibility

Ages Eligible for Study:   13 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   Yes
Criteria
  • 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
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT01386515

Locations
United States, Maryland
National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
Bethesda, Maryland, United States, 20892
Sponsors and Collaborators
Investigators
Principal Investigator: Barbara B Biesecker National Human Genome Research Institute (NHGRI)
  More Information

Publications:
ClinicalTrials.gov Identifier: NCT01386515     History of Changes
Other Study ID Numbers: 999911177, 11-HG-N177
Study First Received: June 30, 2011
Last Updated: March 14, 2014
Health Authority: United States: Federal Government

Keywords provided by National Institutes of Health Clinical Center (CC):
Adaptation
Duchenne Muscular Dystrophy
Communication about Duchenne Muscular Dystrophy
Sibling

Additional relevant MeSH terms:
Muscular Dystrophy, Duchenne
Genetic Diseases, Inborn
Muscular Dystrophies
Muscular Disorders, Atrophic
Muscular Diseases
Musculoskeletal Diseases
Neuromuscular Diseases
Nervous System Diseases
Genetic Diseases, X-Linked

ClinicalTrials.gov processed this record on August 18, 2014