Prioritizing family-centered developmental care: insights from parents of children with critical congenital heart disease: a qualitative study.

As survivors of early cardiac surgery are at high risk of neurodevelopmental impairments, systematic health observations of children with critical congenital heart disease (CCHD) throughout childhood are recommended to enable early diagnosis and offer interventions to optimize neurodevelopment. A qualitative study using thematic analysis was performed to explore parents' concerns, experiences, and needs regarding the development and received developmental care of their child (0-10 years) 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) "impact of diagnosis and disease on the family-system," (2) "parental concerns from diagnoses and beyond," (3) "the need for information," and (4) "the need for individualized and family-centered care." 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.     Conclusion: 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's 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. What is Known: • Survivors of early cardiac surgery are at high risk of neurodevelopmental impairments; systematic health observations of children with CCHD throughout childhood are strongly recommended. What is New: • 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. • An online portal offering diverse, trustworthy information and sources would effectively meet parents' needs by providing accessible insights into the potential consequences of specific heart conditions and guiding them in supporting their child optimally.

Parental anxiety before and after food challenges in children with suspected peanut and hazelnut allergy.

As ingestion of peanut and hazelnut by allergic children is potentially life threatening, parents of these children need to be vigilant about their child's dietary intake. This may cause high levels of anxiety. To assess parental anxiety about food-allergic reaction in their child (state anxiety) and their personal disposition to anxiety (trait anxiety). Parental anxiety was investigated again after food challenges. Fifty-seven children (3-16 yr, mean age 7.2) with suspected peanut or hazelnut allergy (mean specific IgE 20.9) were evaluated by double-blind, placebo-controlled food challenge (DBPCFC). Thirty-two children (56%) developed an allergic reaction. All parents completed the Spielberger State-Trait Anxiety Inventory (STAI) prior to DBPCFC and 2 wk, 3 months and 1 yr thereafter. The mean anxiety scores on these moments were compared with each other and with general Dutch norms. The STAI was also investigated in a group that refused DBPCFC. Prior to DBPCFC, parents had high levels of state anxiety in contrast to a lower trait anxiety compared to the norm group. After DBPCFC, the state anxiety was significantly lower, regardless of a positive or negative outcome (p