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

• ClinicalTrials.gov Identifier: NCT01386515
• Recruitment Status: Terminated
• First Posted: July 1, 2011
• Last Update Posted: December 12, 2019
• Sponsor: National Human Genome Research Institute (NHGRI)
• Information provided by (Responsible Party): National Institutes of Health Clinical Center (CC) ( National Human Genome Research Institute (NHGRI) )

Study Description

Brief Summary:

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 or disease
Genetic Disease; Communication

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.

Study Design

• Study Type: Observational
• Actual Enrollment: 33 participants
• Time Perspective: Other
• Official Title: The Role of Family Functioning in Promoting Adaptation in Siblings of Individuals With Duchenne Muscular Dystrophy (DMD)
• Study Start Date: June 7, 2011
• Study Completion Date: January 7, 2016

Groups and Cohorts

Outcome Measures

Primary Outcome Measures :

1. adaptation, behavior problems, self-concept, pro-social behavior

Eligibility Criteria

• Ages Eligible for Study: 13 Years and older (Child, Adult, Older Adult)
• Sexes Eligible for Study: All
• 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

Locations

United States, Maryland

National Human Genome Research Institute (NHGRI), 9000 Rockville Pike

Bethesda, Maryland, United States, 20892

Sponsors and Collaborators

National Human Genome Research Institute (NHGRI)

Investigators

• Principal Investigator: Barbara B Biesecker; National Human Genome Research Institute (NHGRI)

More Information

Publications:

Branstetter JE, Domian EW, Williams PD, Graff JC, Piamjariyakul U. Communication themes in families of children with chronic conditions. Issues Compr Pediatr Nurs. 2008 Oct-Dec;31(4):171-84. doi: 10.1080/01460860802475184.

Bushby K, Finkel R, Birnkrant DJ, Case LE, Clemens PR, Cripe L, Kaul A, Kinnett K, McDonald C, Pandya S, Poysky J, Shapiro F, Tomezsko J, Constantin C; DMD Care Considerations Working Group. Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care. Lancet Neurol. 2010 Feb;9(2):177-89. doi: 10.1016/S1474-4422(09)70272-8. Epub 2009 Nov 27. Review. Erratum in: Lancet Neurol. 2010 Mar;9(3):237.

Chen JY, Clark MJ. Family function in families of children with Duchenne muscular dystrophy. Fam Community Health. 2007 Oct-Dec;30(4):296-304.

• Responsible Party: National Human Genome Research Institute (NHGRI)
• ClinicalTrials.gov Identifier: NCT01386515
• Other Study ID Numbers: 999911177; 11-HG-N177
• First Posted: July 1, 2011
• Last Update Posted: December 12, 2019
• Last Verified: January 7, 2016

Keywords provided by National Institutes of Health Clinical Center (CC) ( National Human Genome Research Institute (NHGRI) ):

Adaptation; Duchenne Muscular Dystrophy; Communication about Duchenne Muscular Dystrophy; Sibling

Additional relevant MeSH terms:

Muscular Dystrophies; Muscular Dystrophy, Duchenne; Genetic Diseases, Inborn; Muscular Disorders, Atrophic; Muscular Diseases; Musculoskeletal Diseases; Neuromuscular Diseases; Nervous System Diseases; Genetic Diseases, X-Linked