Congenital heart disease (CHD) is the most common birth defect worldwide, affecting 9 of every 1000 newborns. 1 Of these newborns, 25% have critical CHD, such as tetralogy of Fallot (TOF), transposition of the great arteries (TGA) and hypoplastic left heart syndrome (HLHS), requiring one or more cardiac surgeries in the first year of life. 2 CHD leads to the longer hospital stays and higher mortality rates compared to other chronic diseases. [3][4][5] Having a child diagnosed with CHD and hospitalised for cardiac surgery is a stressful experience for parents. 2 The experience of getting the diagnosis, the period before and after cardiac surgery and the following years may severely impact the parents' quality of life. 6 Parents of infants with a CHD under 1 year old showed higher levels of stress compared to parents of healthy children. 7 Differences in the severity of cardiac diagnoses lead to differences in parental psychological distress. 2,8 More severe diagnoses may lead to more surgical interventions, poorer

We thank Richard James for his comments 1 on our publication. 2 We understand his comments and are happy to read that he does not challenge the findings of our review. In fact, endorses our call for research to deepen understanding of parental experience.The assumption that the article's search string (Appendix 1), does not appear to reproduce the results listed in the PRISMA diagram is correct when the string in our paper is copied/pasted to PubMed. This published search string differs from the original, which was not published in its entirety. The original string used MESH terms and brackets. When rerunning the original search in PubMed, we now (2021-12-23) find 146 hits. For all other databases, we used fitting search strategies. Support was given by our Librarian of Utrecht University, the Netherlands.According to the suggestion of James to use the Cochrane Handbook, we did use QUES (qualitative evidence synthesis).In and exclusion criteria were guided when including articles. We searched explicitly for papers describing the experiences of parents with infants diagnosed with CHD and hospitalised for cardiac surgery in the first month of their life. The paper of Sood et al. (2018) 3 was not included in our review because the children of the parents were 1-3 years old at the time of the interviews. Beside the interview topics in the paper of Sood et al. were about experiences and social needs at diagnosis and discharge. The paper of Lisanti et al. ( 2017) 4 aimed to explore and clarify specific foci of parental stress for mothers of infants with complex CHD in the PICU and to further develop and refine the paediatric cardiac intensive care unit Parental Stress Model. We had two reasons to exclude this paper. First, the stress model was the primary guiding subject, while we were searching for a broad palette of experiences. Second, Lisanti focused from pregnancy till discharge, while our review focused on the period at the PICU, post-surgery.

Problem: Children undergoing medical procedures can experience pain and distress. While numerous interventions exist to mitigate pain and distress, the ability to individualize the intervention to suit the needs and preferences of individual children is emerging as an important aspect of providing family-centered care and shared decision making. To date, the approaches for supporting children to express their preferences have not been systematically identified and described. A scoping review was conducted to identify such approaches and to describe the elements that are included in them. Eligibility criteria: Studies that (a) described approaches with the aim to support children to express their coping preferences during medical procedures; (b) included the option for children to choose coping interventions; (c) included a child (1--18 years). Sample: Searches were conducted in December 2019 and November 2020 in the following databases: Cinahl, Embase, PubMed and Psycinfo. Results: Thirteen studies were identified that included six distinct approaches. Four important key elements were identified: 1) Aid to express preferences or choice, 2) Information Provision, 3) Assessment of feelings/emotions, 4) Feedback/Reflection and Reward. Conclusions: Identified approaches incorporate components of shared decision-making to support children in expressing their preferences during medical procedures and treatments. Implications: Children undergoing medical procedures can be supported in expressing their coping needs and preferences by using components of shared decision-making.