Other Titles
PechaKucha Presentation
Abstract
Congenital heart disease (CHD) is the most common congenital malformation in Canada with a prevalence of 1.3%. (1) While medical advancements have improved survival rates, individuals with CHD have reported experiencing social exclusion, isolation, discrimination and bullying due to their condition, which impacts their social, professional, and emotional well-being.(2,3) This type of stigmatization can impact mental health, treatment adherence, and quality of life in patients (4); however limited research has focused on the experience of stigma in patients with CHD.
The purpose of the scoping review is to synthesize evidence on the various manifestations of stigma in the lives of patients with CHD, and to explore how stigma is characterized in this population. This work was guided by established theoretical frameworks of stigma by Goffman (5) and Link & Phelan (6), which define stigma as a socially constructed process involving labeling, stereotyping, separation, status loss, and discrimination.
This scoping review was conducted and reported in accordance with the Joanna Briggs Institute (JBI) scoping review methodology (7) and the Preferred Reporting Items for Systematic and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) (8). A comprehensive search strategy was developed in partnership with an information specialist and a search was conducted in January 2025 across four electronic databases: CINAHL, MEDLINE, Embase, and PsycINFO.
11,322 citations were identified; after duplicates were removed, 8832 studies were screened by title and abstract. 329 full-text records were screened; 80 met inclusion criteria. The included studies represented diverse geographic regions, with the majority originating from high-income countries. Qualitative designs were most prevalent.
Of studies examined, only three explicitly defined or conceptualized the term stigma and less than 25% explicitly used the term stigma within the text. However, nearly all the included studies discussed the concept of stigma in some capacity, with the majority addressing features or consequences of internalized, felt, and enacted stigmas.
Preliminary results suggest that individuals with CHD negotiate issues related to internal and external prejudice, altered body image, physical limitations, and adaptive coping associated with CHD across the lifespan. However, there is limited research which focuses on explicitly defining and characterizing experiences of stigma in the CHD population.
Notes
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References:
1. Dray EM, Marelli AJ. Changing Epidemiology of Congenital Heart Disease. In: Schwerzmann M, Thomet C, Moons P, eds. Congenital Heart Disease and Adolescence. Congenital Heart Disease in Adolescents and Adults. Springer International Publishing; 2016:3-14. doi:10.1007/978-3-319-31139-5_1
2. McMurray R, Kendall L, Parsons JM, et al. A life less ordinary: growing up and coping with congenital heart disease. Coronary Health Care. 2001;5(1):51-57. doi:10.1054/chec.2001.0112
3. Keir M, Tarr C, McFadden C, et al. Determining Research Priorities With Teen and Adult Congenital Heart Disease Patients: A Mixed-Methods Study. CJC Pediatric and Congenital Heart Disease. 2023;2(2):74-81. doi:10.1016/j.cjcpc.2022.12.002
4. Frost DM. Social Stigma and its Consequences for the Socially Stigmatized. Social & Personality Psych. 2011;5(11):824-839. doi:10.1111/j.1751-9004.2011.00394.x
5. Goffman, Erving (1963): Stigma: Notes on the Management of Spoiled Identity. Chicago: Aldine
6. Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual review of Sociology, 27(1), 363-385.
7. Peters M. Chapter 11: Scoping reviews. In: JBI Manual for Evidence Synthesis. JBI; 2020. doi:10.46658/JBIMES-20-12
8. Tricco AC, Lillie E, Zarin W, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med. 2018;169(7):467-473. doi:10.7326/M18-0850
Sigma Membership
Non-member
Type
Presentation
Format Type
Text-based Document
Study Design/Type
Other
Research Approach
Other
Keywords:
Acute Care, Stress and Coping, Theory, Congenital Heart Disease, Social Stigma
Recommended Citation
Killackey, Tieghan; Tan, Valerie; Sochaniwskyj, Mark; Antonio, Maryjo; Prashar, Mohit; and Farrell, Ashley, "Characterizing Stigma in Congenital Heart Disease: A Scoping Review" (2026). International Nursing Research Congress (INRC). 141.
https://www.sigmarepository.org/inrc/2026/presentations_2026/141
Conference Name
37th International Nursing Research Congress
Conference Host
Sigma Theta Tau International
Conference Location
Toronto, Ontario, Canada
Conference Year
2026
Rights Holder
All rights reserved by the author(s) and/or publisher(s) listed in this item record unless relinquished in whole or part by a rights notation or a Creative Commons License present in this item record. All permission requests should be directed accordingly and not to the Sigma Repository. All submitting authors or publishers have affirmed that when using material in their work where they do not own copyright, they have obtained permission of the copyright holder prior to submission and the rights holder has been acknowledged as necessary.
Review Type
Abstract Review Only: Reviewed by Event Host
Acquisition
Proxy-submission
Date of Issue
2026-08-06
Characterizing Stigma in Congenital Heart Disease: A Scoping Review
Toronto, Ontario, Canada
Congenital heart disease (CHD) is the most common congenital malformation in Canada with a prevalence of 1.3%. (1) While medical advancements have improved survival rates, individuals with CHD have reported experiencing social exclusion, isolation, discrimination and bullying due to their condition, which impacts their social, professional, and emotional well-being.(2,3) This type of stigmatization can impact mental health, treatment adherence, and quality of life in patients (4); however limited research has focused on the experience of stigma in patients with CHD.
The purpose of the scoping review is to synthesize evidence on the various manifestations of stigma in the lives of patients with CHD, and to explore how stigma is characterized in this population. This work was guided by established theoretical frameworks of stigma by Goffman (5) and Link & Phelan (6), which define stigma as a socially constructed process involving labeling, stereotyping, separation, status loss, and discrimination.
This scoping review was conducted and reported in accordance with the Joanna Briggs Institute (JBI) scoping review methodology (7) and the Preferred Reporting Items for Systematic and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) (8). A comprehensive search strategy was developed in partnership with an information specialist and a search was conducted in January 2025 across four electronic databases: CINAHL, MEDLINE, Embase, and PsycINFO.
11,322 citations were identified; after duplicates were removed, 8832 studies were screened by title and abstract. 329 full-text records were screened; 80 met inclusion criteria. The included studies represented diverse geographic regions, with the majority originating from high-income countries. Qualitative designs were most prevalent.
Of studies examined, only three explicitly defined or conceptualized the term stigma and less than 25% explicitly used the term stigma within the text. However, nearly all the included studies discussed the concept of stigma in some capacity, with the majority addressing features or consequences of internalized, felt, and enacted stigmas.
Preliminary results suggest that individuals with CHD negotiate issues related to internal and external prejudice, altered body image, physical limitations, and adaptive coping associated with CHD across the lifespan. However, there is limited research which focuses on explicitly defining and characterizing experiences of stigma in the CHD population.
Description
While medical advancements have improved survival rates, individuals with congenital heart disease experience social exclusion, isolation, discrimination and bullying due to their condition, which impacts their social, professional, and emotional well-being.The purpose of the scoping review is to synthesize evidence on the various manifestations of stigma in the lives of patients with congenital heart disease, and to explore how stigma is characterized in this population.