Abstract for The Sibling Experience Study (Original Research)
Genetics is an inherently family-based field, but in the case of a young proband, genetically unaffected siblings are often left out of the clinical conversation. Previous literature comments on parental concerns surrounding a lack of communication about the genetic condition and lack of provider support for the parents in sharing this information with young, unaffected siblings. Adult siblings need genetic risk information as it may impact their reproductive decision-making. Limited research has been done to understand the other needs of unaffected adult siblings and their experiences. This exploratory study gathered the experiences of unaffected adult siblings of individuals with genetic conditions. Sixty-four respondents participated in an anonymous, online survey exploring unaffected siblings’ experiences regarding their family dynamics, the genetic condition in their family, genetic counseling exposure, family planning, and emotional and educational support needs. Genetic conditions reported included conditions that differed in levels of physical and/or intellectual impact, inheritance patterns, and age of onset. Despite the variability in conditions reported, there were universal themes of resentment, gratefulness, lack of external support, and isolation and/or feeling alone. The responses exemplify unique experiences of siblings of individuals with genetic conditions and the overwhelming preference for social connection with other, unaffected siblings. Additionally, 25% of siblings were not aware of genetic counseling as a profession or a resource. The responses from this study can aid genetic counselors in postulating how they can address the educational and emotional support for unaffected siblings including connecting families with unaffected siblings, bringing unaffected siblings into the clinical conversation, and providing patient-friendly literature to unaffected siblings to normalize their experiences. By including unaffected siblings of all ages in the clinical conversation, genetic counselors can truly provide for the whole family.
| Event: | 2023 - NSGC Annual Conference |
| Author(s): | Jennifer Dykeman |
| Affiliation(s): | Emory Univesity, ThinkGenetic, Inc. |
