Lived Experiences of Well Siblings of Children With Chronic Critical Illness
Laura A. Wright-Sexton, M. Patrice Rankine, Caroline E. Compretta, Emilio M. Luna-Suarez, Jasmine L. Ware, Michael Morris, Christian Paine, Regina Qadan, Carrie M. HendersonBACKGROUND AND OBJECTIVES
As medical technologies continue to improve, the population of children with chronic critical illness (CCI) continues to rise. Previous studies have detailed the social and emotional effects of caring for a child with CCI from the parental perspective; however, little is known about the effects on well siblings. This phenomenological study examines how growing up with a sibling with CCI affects well siblings’ childhood experiences, parental relationships, and future aspirations.
METHODS
Between February 2022 and February 2024, a qualitative phenomenological study was conducted among well siblings of children with CCI recruited from a single academic medical center. The inclusion criteria for well siblings included age between 12 and 25 years, a shared residence with their sibling with CCI, and the ability to speak English. Semistructured telephone interviews were conducted using a multidisciplinary guide assessing siblings’ perception of their sibling’s quality of life, family dynamics, and personal aspirations.
RESULTS
Well siblings demonstrated evolving disease understanding and complex emotional responses. Adolescents frequently masked personal health and psychosocial needs to preserve family stability, whereas adult siblings retroactively identified these gaps as systemic minimization and medical neglect.
CONCLUSION
Children with CCI shape their siblings in profound ways. Although well siblings often develop empathy and resilience, they also experience significant childhood emotional turmoil. As the CCI population grows, health care professionals must better understand these family dynamics. Streamlining social support, improving family communication, and expanding community programs will enable clinicians to deliver better care and become stronger advocates for all children.