Abstract

Children with congenital heart disease and their families are at risk of psychosocial problems. Emotional and behavioural problems, impaired school functioning, and reduced exercise capacity often occur. To prevent and decrease these problems, we modified and extended the previously established Congenital Heart Disease Intervention Program (CHIP)-School, thereby creating CHIP-Family. CHIP-Family is the first psychosocial intervention with a module for children with congenital heart disease. Through a randomised controlled trial, we examined the effectiveness of CHIP-Family. Ninety-three children with congenital heart disease (age M = 5.34 years, SD = 1.27) were randomised to CHIP-Family (n = 49) or care as usual (no psychosocial care; n = 44). CHIP-Family consisted of a 1-day group workshop for parents, children, and siblings and an individual follow-up session for parents. CHIP-Family was delivered by psychologists, paediatric cardiologists, and physiotherapists. At baseline and 6-month follow-up, mothers, fathers, teachers, and the child completed questionnaires to assess psychosocial problems, school functioning, and sports enjoyment. Moreover, at 6-month follow-up, parents completed program satisfaction assessments. Although small improvements in child outcomes were observed in the CHIP-Family group, no statistically significant differences were found between outcomes of the CHIP-Family and care-as-usual group. Mean parent satisfaction ratings ranged from 7.4 to 8.1 (range 0-10). CHIP-Family yielded high program acceptability ratings. However, compared to care as usual, CHIP-Family did not find the same extent of statistically significant outcomes as CHIP-School. Replication of promising psychological interventions, and examination of when different outcomes are found, is recommended for refining interventions in the future. Dutch Trial Registry number NTR6063, https://www.trialregister.nl/trial/5780.

Highlights

  • Children with congenital heart disease (CHD) are at increased risk of a range of psychosocial problems

  • Non-participants’ cardiac diagnosis and gender were only available for patients of the Erasmus MC–Sophia Children’s Hospital (86.6% of eligible patients) and not for patients contacted via the Dutch Patient Association for Congenital Heart Disease (13.4% of eligible patients)

  • Four children were referred for further psychological care after participating in the Congenital Heart Disease Intervention Program (CHIP)-Family intervention (n = 44) and received this care after completion of the follow-up assessment

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Summary

Materials and methods

This single-blinded parallel randomised controlled trial was approved by the Medical Ethics Committee of the Erasmus Medical Center and adhered to the ethical guidelines of the Declaration of Helsinki. Written informed consent was obtained from all patients’ parents or legal guardians. A detailed description of the study protocol has been published previously.[38]

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