Children’s experiences of congenital heart disease: a systematic review of qualitative studies
We aimed to describe the experiences of children and adolescents with congenital heart disease (CHD). Electronic databases were searched until August 2016. Qualitative studies of children’s perspectives on CHD were included. Data was extracted using thematic synthesis. From 44 studies from 12 countries involving 995 children, we identified 6 themes: disrupting normality (denying the diagnosis, oscillating between sickness and health, destabilizing the family dynamic), powerlessness in deteriorating health (preoccupation with impending mortality, vulnerability to catastrophic complications, exhaustion from medical testing), enduring medical ordeals (traumatized by invasive procedures, disappointed by treatment failure, displaced by transition, valuing empathy and continuity in care, overcoming uncertainty with information), warring with the body (losing stamina, distressing inability to participate in sport, distorted body image, testing the limits), hampering potential and goals (feeling disabled, unfair judgment and exclusion, difficulties with academic achievement, limiting attainment and maintenance of life milestones), and establishing one’s own pace (demarcating disease from life, determination to survive, taking limitations in their stride, embracing the positives, finding personal enrichment, relying on social or spiritual support).
What is Known:
• CHD is associated with difficulties in learning and attention, school absenteeism, decreased endurance, poor body image, and peer socialization
• What is lesser known is how young patients cope with the symptoms, prognostic uncertainty, and treatment burden
What is New:
• We found that children are challenged by lifestyle restrictions, fear of invasive procedures, impaired body image, discrimination, and uncertainty about the future. Feelings of disempowerment are intensified by the unpredictability of disease progression
• Thus, strategies to improve outcomes include improved patient education on disease and lifestyle management and partnership with school teachers and counselors for unique psychosocial support
KeywordsQualitative research Pediatrics Cardiology Congenital heart disease Systematic review
Congenital heart disease
Quality of life
Lauren Chong: conceptualized the study, carried out the data collection and analysis, coding of data,drafted the initial manuscript, drafted the manuscript, and approved the final manuscript as submitted.
Dominic Fitzgerald: conceptualized the study, reviewed and revised the manuscript, and approved the final manuscript as submitted.
Jonathan Craig: conceptualized the study, reviewed and revised the manuscript, and approved the final manuscript as submitted.
Karine Manera: conceptualized the study, carried out the data collection and analysis, coding of data, drafted the initial manuscript, and approved the final manuscript as submitted.
Camilla Hanson: conceptualized the study, reviewed and revised the manuscript, and approved the final manuscript as submitted.
David Celermajer: conceptualized the study, reviewed and revised the manuscript, and approved the final manuscript as submitted.
Julian Ayer: conceptualized the study, reviewed and revised the manuscript, and approved the final manuscript as submitted.
Nadine Kasparian: conceptualized the study, reviewed and revised the manuscript, and approved the final manuscript as submitted.
Allison Tong: conceptualized the study, carried out the data collection and analysis, coding of data, drafted the initial manuscript, and approved the final manuscript as submitted.
No funding was secured for this study. LC is supported by the University of Sydney Summer Research Scholarship. AT is supported by the National Health and Medical Research Council Fellowship (1106716). NK is the recipient of a Heart Foundation Future Leader Fellowship (101229).
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflicts of interest.
No informed consent was required for this systematic review.
- 1.Acuña Mora M, Sparud-Lundin C, Bratt E-L, Moons P (2017) Person-centred transition programme to empower adolescents with congenital heart disease in the transition to adulthood: a study protocol for a hybrid randomised controlled trial (STEPSTONES project). BMJ Open 7(4):e014593. https://doi.org/10.1136/bmjopen-2016-014593 CrossRefPubMedPubMedCentralGoogle Scholar
- 3.Apers S, RassartJ, LuyckxK, OrisL, GoossensE, BudtsW, MoonsP, for the IDI (2016) Bringing Antonovsky’s salutogenic theory to life: a qualitative inquiry into the experiences of young people with congenital heart disease. International Journal of Qualitative Studies on Health and Well-being 11: https://doi.org/10.3402/qhw.v3411.29346
- 4.Asif IM, Price D, Fisher LA, Zakrajsek RA, Larsen LK, Raabe JJ, Bejar MP, Rao AL, Harmon KG, Drezner JA (2015) Stages of psychological impact after diagnosis with serious or potentially lethal cardiac disease in young competitive athletes: a new model. J Electrocardiol 48(3):298–310. https://doi.org/10.1016/j.jelectrocard.2014.12.018 CrossRefPubMedGoogle Scholar
- 15.Donovan EF, Mathews RA, Nixon PA (1983) An exercise program for pediatric patients with congenital heart disease: psychosocial aspects. J Cardiac Rehabil 3:476–480Google Scholar
- 19.Gantt LT (2002) As normal a life as possible: mothers and their daughters with congenital heart disease. Health Care Women Int. 23(5):481-491Google Scholar
- 24.Kaisar J, Strodl E, Schweitzer R (2012) Qualitative study of adversity activated development and resilience in adolescents and young adults with congenital heart disease and their parents. Trauma: recovering from deep wounds and exploring the potential for renewal. Nova Science Publishers; Hauppauge, pp 221-237Google Scholar
- 25.Kendall L, Lewin RJ, Parsons JM, Veldtman GR, Quirk J, Hardman GE (2001) Factors associated with self-perceived state of health in adolescents with congenital cardiac disease attending paediatric cardiologic clinics. Cardiol Young 11(04):431–438. https://doi.org/10.1017/S1047951101000555 CrossRefPubMedGoogle Scholar
- 26.Knowles RL, Tadic V, Hogan A, Bull C, Wren C, Rahi J, Dezateux C (2013) Illness narratives from school-age children with congenital heart defects: children’s perspectives on life experiences and coping strategies related to severity of cardiac diagnosis. Cardiol Young 23:S4Google Scholar
- 28.Lopez KN, Karlsten M, Bonaduce De Nigris F, King J, Salciccioli K, Jiang A, Marelli A, Kovacs AH, Fordis M, Thompson D (2015) Understanding age-based transition needs: perspectives from adolescents and adults with congenital heart disease. Congenit 10(6):561–571. https://doi.org/10.1111/chd.12283 CrossRefGoogle Scholar
- 30.Mackie AS, Rempel GR, Kovacs AH, Kaufman M, Rankin KN, Jelen A, Manlhiot C, Anthony SJ, Magill-Evans J, Nicholas D, Sananes R, Oechslin E, Dragieva D, Mustafa S, Williams E, Schuh M, McCrindle BW (2016) A cluster randomized trial of a transition intervention for adolescents with congenital heart disease: rationale and design of the CHAPTER 2 study. BMC Cardiovasc Disord 16(1):127. https://doi.org/10.1186/s12872-016-0307-2 CrossRefPubMedPubMedCentralGoogle Scholar
- 32.McCrindle BW, Williams RV, Mital S, Clark BJ, Russell JL, Klein G, Eisenmann JC (2007) Physical activity levels in children and adolescents are reduced after the Fontan procedure, independent of exercise capacity, and are associated with lower perceived general health. Arch Dis Child 92(6):509–514. https://doi.org/10.1136/adc.2006.105239 CrossRefPubMedPubMedCentralGoogle Scholar
- 39.Moons P, Pinxten S, Dedroog D, Van Deyk K, Gewillig M, Hilderson D, Budts W (2009) Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to an adult congenital heart disease program. J Adolesc Health 44(4):316–322. https://doi.org/10.1016/j.jadohealth.2008.11.007 CrossRefPubMedGoogle Scholar
- 41.Nukulkij P (1993) How Thai families define and manage childhood heart disease. Ph.d., University of illinois at chicago, health sciences center,Google Scholar
- 42.Overgaard D, King C, Christensen RF, Schrader A-M, Adamsen L (2013) Living with half a heart—experiences of young adults with single ventricle physiology: a qualitative study. J Cardiovasc Nurs 28:187–196Google Scholar
- 43.Pagé MG, Kovacs AH, Irvine J (2012) How do psychosocial challenges associated with living with congenital heart disease translate into treatment interests and preferences? A qualitative approach. Psychol Health 27(11):1260–1270. https://doi.org/10.1080/08870446.2012.667099 CrossRefPubMedGoogle Scholar
- 48.Sterne GG (1988) Age limits of pediatrics. Pediatrics 81:736–736. Reaffirmed October 2011Google Scholar
- 50.Thomason BN (1998) The lived experience of adolescents with significant congenital heart disease. Diss Abstr Int: Section B: Sci Eng 58:2359Google Scholar
- 54.van der Linde D, Konings EEM, Slager MA, Witsenburg M, Helbing WA, Takkenberg JJM, Roos-Hesselink JW (2011) Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. J Am Coll Cardiol 58(21):2241–2247. https://doi.org/10.1016/j.jacc.2011.08.025
- 55.van Staa A, Jedeloo S, van Meeteren J, Latour J (2011) Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers. Child Care Health Dev 37(6):821–832. https://doi.org/10.1111/j.1365-2214.2011.01261.x
- 59.Zahmacioglu O, Yildiz CE, Koca B, Ugurlucan M, Gokalp S, Cetin G, Eroglu A, Oztunc F (2012) Coming from behind to win—a qualitative research about psychological conditions of adolescents who have undergone open-heart surgery for single ventricle between the ages 0–5. Heart Surg Forum 15:S92CrossRefGoogle Scholar