Lauren S H Chong1,2, Dominic A Fitzgerald3,4, Jonathan C Craig1,2, Karine E Manera1,2, Camilla S Hanson1,2, David Celermajer5,6, Julian Ayer4,6, Nadine A Kasparian6,7, Allison Tong8,9. 1. Sydney School of Public Health, The University of Sydney, Sydney, NSW, 2006, Australia. 2. Centre for Kidney Research, Kids Research Institute, The Children's Hospital at Westmead, Westmead, Sydney, NSW, 2145, Australia. 3. Respiratory Medicine, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia. 4. Paediatrics and Child Health, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia. 5. Central Clinical School, The University of Sydney, Sydney, NSW, 2006, Australia. 6. Heart Centre for Children, The Sydney Children's Hospitals Network (Westmead and Randwick), Sydney, NSW, 2145, Australia. 7. Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, The University of New South Wales, Kensington, NSW, 2052, Australia. 8. Sydney School of Public Health, The University of Sydney, Sydney, NSW, 2006, Australia. allison.tong@sydney.edu.au. 9. Centre for Kidney Research, Kids Research Institute, The Children's Hospital at Westmead, Westmead, Sydney, NSW, 2145, Australia. allison.tong@sydney.edu.au.
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.
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.
Authors: Keila N Lopez; Melissa Karlsten; Francesca Bonaduce De Nigris; Jason King; Katherine Salciccioli; Alice Jiang; Ariane Marelli; Adrienne H Kovacs; Michael Fordis; Deborah Thompson Journal: Congenit Heart Dis Date: 2015-07-14 Impact factor: 2.007
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