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A qualitative study using thematic analysis was performed to explore parents\u2019 concerns, experiences, and needs regarding the development and received developmental care of their child (0\u201310\u00a0years) during hospital admission and beyond. Data were collected using semi-structured online interviews with 20 parents of children with CCHD. Four major themes were identified: (1) \u201cimpact of diagnosis and disease on the family-system,\u201d (2) \u201cparental concerns from diagnoses and beyond,\u201d (3) \u201cthe need for information,\u201d and (4) \u201cthe need for individualized and family-centered care.\u201d The main themes can be divided into 13 sub-themes as impact, concerns, and needs are influenced by various impactful moments from diagnosis and afterwards.<\/jats:p><jats:p><jats:italic>\u00a0 \u00a0 \u00a0Conclusion<\/jats:italic>: This study confirms the importance of early identification of neurodevelopmental problems by experienced healthcare professionals, especially in the early years when parental expectations and concerns about their child\u2019s neurodevelopment are lower. A tailor-made family-centered follow-up program should be offered, which pays attention to both the neurodevelopment of patients with CCHD as well as the mental wellbeing of the entire family system. Furthermore, an online portal is recommended with a variety of reliable, controlled, understandable information from which parents can obtain the desired information to understand better the consequences of specific heart condition and to provide their child with the best possible guidance.\n<jats:table-wrap><jats:table><jats:tbody>\n                    <jats:tr>\n                      <jats:td colspan=\"2\"><jats:bold>What is Known:<\/jats:bold><jats:italic>\u2022 Survivors of early cardiac surgery are at high risk of neurodevelopmental impairments; systematic health observations of children with CCHD throughout childhood are strongly recommended.<\/jats:italic><\/jats:td>\n                    <\/jats:tr>\n                    <jats:tr>\n                      <jats:td colspan=\"2\"><jats:bold>What is New:<\/jats:bold><jats:italic>\u2022 Parents need a tailor-made family-centered follow-up program, which pays attention to both the neurodevelopment of patients with CCHD as well as the mental wellbeing of the entire family system.<\/jats:italic><jats:italic>\u2022 An online portal offering diverse, trustworthy information and sources would effectively meet parents\u2019 needs by providing accessible insights into the potential consequences of specific heart conditions and guiding them in supporting their child optimally.<\/jats:italic><\/jats:td>\n                    <\/jats:tr>\n                  <\/jats:tbody><\/jats:table><\/jats:table-wrap><\/jats:p>","DOI":"10.1007\/s00431-024-05600-9","type":"journal-article","created":{"date-parts":[[2024,6,18]],"date-time":"2024-06-18T09:06:55Z","timestamp":1718701615000},"page":"3863-3876","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":20,"title":["Prioritizing family-centered developmental care: insights from parents of children with critical congenital heart disease: a qualitative study"],"prefix":"10.1007","volume":"183","author":[{"given":"Maaike C. 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