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Children’s experiences of congenital heart disease: a systematic review of qualitative studies

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Abstract

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).

Conclusion: Children with CHD feel vulnerable and burdened by debilitating physical symptoms, unpredictable complications, and discrimination. Clinicians may support patients by sharing recognition of these profound psychosocial consequences.

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

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Abbreviations

CHD:

Congenital heart disease

QOL:

Quality of life

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Funding

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).

Author information

Authors and Affiliations

  1. Sydney School of Public Health, The University of Sydney, Sydney, NSW, 2006, Australia

    Lauren S. H. Chong, Jonathan C. Craig, Karine E. Manera, Camilla S. Hanson & Allison Tong

  2. Centre for Kidney Research, Kids Research Institute, The Children’s Hospital at Westmead, Westmead, Sydney, NSW, 2145, Australia

    Lauren S. H. Chong, Jonathan C. Craig, Karine E. Manera, Camilla S. Hanson & Allison Tong

  3. Respiratory Medicine, The Children’s Hospital at Westmead, Westmead, NSW, 2145, Australia

    Dominic A. Fitzgerald

  4. Paediatrics and Child Health, The Children’s Hospital at Westmead, Westmead, NSW, 2145, Australia

    Dominic A. Fitzgerald & Julian Ayer

  5. Central Clinical School, The University of Sydney, Sydney, NSW, 2006, Australia

    David Celermajer

  6. Heart Centre for Children, The Sydney Children’s Hospitals Network (Westmead and Randwick), Sydney, NSW, 2145, Australia

    David Celermajer, Julian Ayer & Nadine A. Kasparian

  7. Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW Medicine, The University of New South Wales, Kensington, NSW, 2052, Australia

    Nadine A. Kasparian

Authors
  1. Lauren S. H. Chong
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  9. Allison Tong
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Contributions

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.

Corresponding author

Correspondence to Allison Tong.

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The authors declare that they have no conflicts of interest.

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No informed consent was required for this systematic review.

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Communicated by Peter de Winter

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Chong, L.S.H., Fitzgerald, D.A., Craig, J.C. et al. Children’s experiences of congenital heart disease: a systematic review of qualitative studies. Eur J Pediatr 177, 319–336 (2018). https://doi.org/10.1007/s00431-017-3081-y

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