The experiences of siblings in the congenital heart journey: a qualitative study
Hitakshi Modi, Heather Van Diest, Marian Morris, Alyssa Geis, Sruthi Ilangovan, Brittany Barnhill, Andrew Well, Jeremy Affolter, Chris Ulack, Jose Colucci, Kathleen Carberry, Carlos Miguel Mery, Charles D. FraserAbstract
Introduction:
Despite growing interest in the quality of life of individuals with single-ventricle CHD, the experiences of their siblings remain largely underexamined and heavily reliant on parent-reported outcomes. This study explores the experiences of siblings of individuals with single-ventricle CHD through a qualitative analysis of self-reported narratives.
Methods:
Siblings of individuals with single-ventricle CHD aged 9 years and older participated in age-based Experience Group sessions. Trained facilitators used semi-structured, open-ended questions to prompt discussion. Qualitative data were coded using inductive thematic analysis to identify salient themes across narratives.
Results:
Eighteen siblings participated. Participants (50%, n = 9 female) ranged in age from 9 to 59 years (median age 22 years); most (72%, n = 13) were older than their sibling with single-ventricle CHD. Five themes emerged: 1) adapting to their sibling’s physical limitations, 2) assuming supportive roles in the family, 3) navigating complex and often conflicting emotions, 4) deepening their understanding of the condition over time, and 5) finding normalcy throughout their childhood.
Conclusions:
This study provides valuable insights into the nuanced experiences of siblings of individuals with single-ventricle CHD, underscoring the key roles they play in the care journey and describing the unique experiences that have shaped them. These findings can inform tailored, family-centred care models that intentionally include siblings in psychosocial assessment, support interventions, and age-appropriate medically related education and communication.