An Investigation into the Impact of Having a Sibling with a Pediatric Genetic Condition on the Unaffected Sibling’s Well-being.

Ryan Mendel

Co-Presenters: Individual Presentation

College: College of Health Professions and Human Services

Major: MS.GENTICOUNSLNG

Faculty Research Mentor: Pervola, Josie  

Abstract:

Purpose: Pediatric genetic diagnoses are associated with increased anxiety and depression among parents, yet the long-term impact on unaffected siblings remains understudied. Prior research conducted during siblings’ childhoods suggests they face unique challenges, including anticipated caregiving responsibilities, limitations in their ability to participate in friendships and extracurricular activities, and strain on family dynamics. However, few studies have explored how these experiences shape siblings’ emotions, decisions, and perspectives in adulthood. The study aimed to identify shared themes among adult siblings of individuals with pediatric genetic conditions to inform genetic counseling practices and improve supportive resources for families.Methods: Nine adult siblings aged 18 to 61 participated in semi-structured qualitative interviews. Interviews explored how participants learned about their affected sibling’s diagnosis, its influence on future planning, perceived positive and negative impacts, and what supports they had and/or what resources they wished they had to navigate the diagnosis.Conclusions: Shared difficulties amongst all siblings included a lack of professional support during childhood due to the disproportionate amount of attention provided to the affected sibling. Common concerns in adulthood included decisions about geographic distance from family, future caregiver responsibilities, and decisions regarding family planning. Despite these challenges, many participants reported developing increased empathy, resilience, and a strong sense of responsibility as a result of their experiences.Significance: Findings highlight gaps in sibling-focused education and psychosocial support across the lifespan. Genetic counselors are well positioned to address these needs by incorporating siblings into counseling conversations and developing targeted anticipatory guidance and resources to better support the entire family system.Key words: Genetic Counseling, Sibling Support, Family Centered Care