Understanding type and quality of relationships between individuals with chromosome 18 syndromes and their siblings

Author:

Larson Catherine Cody1,O'Donnell Louise2,Soileau Bridgette1,Van Riper Marcia3,Stark Debra4,Hale Daniel E.1,Cody Jannine D.15ORCID

Affiliation:

1. Department of Pediatrics University of Texas Health San Antonio San Antonio Bexar USA

2. Department of Psychiatry University of Texas Health San Antonio San Antonio Bexar USA

3. School of Nursing and the Carolina Center for Genome Sciences University of North Carolina Chapel Hill NC USA

4. Medical Education Division University of Texas Health San Antonio San Antonio Bexar USA

5. Chromosome 18 Registry and Research Society San Antonio Texas USA

Abstract

AbstractSiblings of individuals with disabilities hold a pivotal and sometimes unappreciated position in the lives of their brother or sister. We sought to understand the unique challenges and opportunities in relationships between children with chromosome 18 conditions and their siblings and to identify the ways to support this relationship. Participants were recruited through the lay advocacy organization, the Chromosome 18 Registry & Research Society. Fifty‐seven siblings from 36 families participated, using an investigator designed instrument, were asked to agree or disagreed with statements from four content areas (information and knowledge about the syndrome, feelings about the sibling relationship, involvement with and caregiving for their sibling, and support and advocacy). Siblings reported that they know their sibling with a disability very well and reported a wide range of emotions regarding their sibling. There was a strong sense of pride in their brother/sister's abilities, and many participants reported attempts to help others understand their brother/sister. Many siblings reported a dislike for the common assumption that their affected sibling is a burden on the family. Most participants reported feeling some degree of responsibility for their affected sibling, but many also reported that they enjoy this role. Sixty‐three parents from 36 families responded to the survey. Most parents felt their typically developing children enjoyed teaching new things to their affected child as well as being a good role model for them. Most parents also felt their typically developing child was comfortable telling others about their sibling's condition. Recommendations for interventions and future research are discussed.

Funder

Chromosome 18 Registry & Research Society

Publisher

Wiley

Subject

Genetics (clinical)

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