Unique Lived Experiences of Siblings of Individuals with Single- ventricle Congenital Heart Disease

Background: Single-ventricle congenital heart disease (SVCHD) presents numerous challenges for families, but little is known about the impact on siblings of individuals with SVCHD. Previous literature demonstrates that siblings of children with chronic conditions may be at risk for lower quality of life compared to their peers. The goal of this qualitative research study was to explore the lived experiences of siblings of individuals with SVCHD.

Methods: Siblings of individuals with SVCHD 8 years and older were recruited and participated in Experience Group (EG) sessions. EG sessions are lightly moderated focus groups with non-clinical moderators that bring together individuals with similar circumstances, as the experts, to discuss their lived experiences. Formal qualitative coding was performed to identify salient themes.

Results: Eighteen siblings (9 (50%) female) participated. Participants were 9-59 years of age, with a median of 22 years; 6 (33%) were under 18 years old. Thirteen (72%) of the participants were older than their sibling with SVCHD. Themes identified include promoting a sense of normalcy for their sibling, limited understanding and awareness of their sibling’s SVCHD, uncertainty regarding their sibling’s future health, and a transitionary process in which siblings became more aware of and educated about the severity of their sibling’s SVCHD (Table). When reflecting on their childhood, several adult participants expressed a sense of guilt for not understanding more about their sibling’s condition earlier. Participants also described variable parenting approaches in communicating about their sibling’s condition. Participants under age 18 specifically highlighted the normal relationships with their sibling as well as the perspective and empathy they gained as a result of their sibling’s condition. Participant experience was influenced by birth order, age difference, number of other siblings, and the spectrum of parental communication. Participants did not express feelings of being secondary or a lack of attention; one adult sibling summarized: “My parents to this day still worry that [younger non-SVCHD sibling] and I are messed up because they spent so much time with [sibling with SVCHD] in the hospital, and we're not, we're totally fine.”

Conclusion: Siblings of individuals with SVCHD have a special role in their family’s SVCHD journey. Prior research has described the negative impact that CHD and other chronic conditions may have on siblings. Our findings in a small sample suggest that siblings are largely shielded from and unaware of the severity of their sibling’s SVCHD until adolescence or adulthood, but paradoxically many describe a similar family experience and relationship with their sibling as their peers. These findings may not reflect the entire SVCHD sibling experience as we did not include siblings of SVCHD patients who passed away. Further larger-scale research is required to better understand the lifetime journey and needs of this population.

Presenting Author(s)

Kate Taylor, MPH
Lead Clinical Research Specialist
The University of Texas at Austin Dell Medical School
Austin, Texas
Disclosure: No Financial Relationships Disclosed

Co-Author(s)

Andrew Well, MD, MPH, MSHCT
Health Transformation Fellow, Department of Surgery & Perioperative Care and Texas Center for Pediat
Dell Medical School at the University of Texas at Austin
University of Texas at Austin Dell Medical School
Austin, Texas
Disclosure: No Financial Relationships Disclosed
CU
Chris Ulack, PhD
Qualitative Research Manager
The University of Texas at Austin Dell Medical School
Austin, Texas
Disclosure: No Financial Relationships Disclosed
HV
Heather Van Diest, LCSW, MPH
Social Worker
The University of Texas at Austin Dell Medical School
Austin, Texas
Disclosure: No Financial Relationships Disclosed
Alyssa Geis, MPH, CCLS
Certified Child Life Specialist
Dell Children’s Medical Center
Austin, Texas
Disclosure: No Financial Relationships Disclosed
BB
Brittany A. Barnhill, MS, CCLS
Child Life Specialist
Dell Children’s Medical Center
Austin, Texas
Disclosure: No Financial Relationships Disclosed
KC
Kathleen Carberry, RN, MPH
Outcomes Program Officer, Value Institute for Health & Care; Assistant Professor, Department of Medi
Dell Medical School at the University of Texas at Austin
Austin, Texas
Disclosure: No Financial Relationships Disclosed
JC
Jose Colucci, PhD
Director of Research and Development, Design Institute for Health
The University of Texas at Austin Dell Medical School
Austin, Texas
Disclosure: No Financial Relationships Disclosed
ES
Eileen M. Stewart, MD
Pediatric Cardiologist, Affiliate Faculty
Texas Center for Pediatric and Congenital Heart Disease, Dell Medical School at the University of Texas at Austin
Austin, Texas
Disclosure: No Financial Relationships Disclosed
JA
Jeremy T. Affolter, MD
Pediatric Cardiac Critical Care Intensivist, Associate Professor
Cardiac Critical Care, Texas Center for Pediatric and Congenital Heart Disease, Dell Medical School at the University of Texas at Austin
Austin, Texas
Disclosure: No Financial Relationships Disclosed
SW
Scott Wallace, MBA, JD
Managing Director, Value Institute for Health and Care; Associate Professor, Department of Medical E
Dell Medical School at the University of Texas at Austin
Austin, Texas
Disclosure: No Financial Relationships Disclosed
ET
Elizabeth Teisberg, PhD
Executive Director, Value Institute for Health & Care; Professor, Department of Medical Education
Dell Medical School at the University of Texas at Austin
Austin, Texas
Disclosure: No Financial Relationships Disclosed
Charles D. D. Fraser Jr, Jr., MD
Professor, Department of Pediatrics; Division Chief, Cardiothoracic Surgery; Professor, Department o
Dell Medical School at the University of Texas at Austin
The University of Texas at Austin / Dell Medical School
Austin, Texas
Disclosure: No Financial Relationships Disclosed

Senior Author(s)

Carlos M. M. Mery, MD, MPH
Associate Professor, Department of Surgery & Perioperative Care; Associate Professor, Department of
Dell Medical School at the University of Texas at Austin
University of Texas Dell Medical School
Austin, Texas
Disclosure: No Financial Relationships Disclosed