ABSTRACT
Objective
This qualitative study examined the experiences of individuals who had lost a sibling with a disability through a family resilience framework.
Background
Sibling relationships in families of individuals with disabilities are complex, with siblings often assuming caregiving roles and experiencing emotional strain. Yet, there has been very little research on sibling relationships when the death of a brother or sister with a disability occurs.
Methods
Forty-five individuals who had lost a sibling with a disability were interviewed. Participants were predominantly from the United States (n = 38), with seven international participants from six continents. Most identified as White/European (n = 39), having lost brothers (n = 23), sisters (n = 20), or multiple siblings (n = 2).
Results
Analysis revealed three primary themes: emphasizing adaptive changes, emotional coping mechanisms, and support networks. Participant narratives aligned with family resilience processes across three domains: belief systems, organizational processes, and communication and problem-solving processes.
Conclusion
The findings highlight the unique dynamics of post-loss sibling relationships in this context and demonstrate how families reconstruct their identities and relationships following such a significant loss.
Implications or Recommendations
Practitioners should recognize the complex grief experiences unique to losing a sibling with a disability and provide tailored support addressing adaptive changes, emotional coping needs, and support networks.