Preterm infants are at risk of developing social-emotional and behavioural difficulties. To understand the experiences of their caregivers in day-to-day life, parents (at 2 and 10 years) and... Show morePreterm infants are at risk of developing social-emotional and behavioural difficulties. To understand the experiences of their caregivers in day-to-day life, parents (at 2 and 10 years) and teachers (at 10 years) completed a behavioural questionnaire and answered two open-ended questions addressing their concerns and the most positive aspects regarding their child and/or pupil (born <32 weeks gestation). Their answers were analyzed using thematic content analysis. Parental concerns at two years related equally to themes in the clusters Developmental Milestones, Physical Development and Development in Relation to the Self and Others. At 10 years, both parents and teachers reported mainly within the cluster Development in Relation to the Self and Others, but the underlying themes differed. While parents more often mentioned their child's emotional development, teachers were more concerned about their pupils' difficulties interacting with their peers, due to a lack of social skills. In-depth qualitative analysis of what parents and teachers experience from day-to-day improves our understanding of the social-emotional and behavioural development of children born very preterm, revealing important topics that should be addressed during follow-up. Show less
Holst, M. van der; Steenbeek, D.; Pondaag, W.; Nelissen, R.G.H.H.; Vlieland, T.P.M.V. 2020
To investigate health-care use (HCU) and information needs of children aged 0-18 years with neonatal brachial plexus palsy (NBPP), a cross-sectional study was performed. Patients and/or parents... Show moreTo investigate health-care use (HCU) and information needs of children aged 0-18 years with neonatal brachial plexus palsy (NBPP), a cross-sectional study was performed. Patients and/or parents seen in our NBPP clinic were invited to complete a survey comprising questions on HCU due to NBPP and current information needs. Outcomes were described for three age-groups (0-1/2-9/10-18 years), based on follow-up status (early/late/no-discharge). Four hundred sixty-five parents/patients participated (59 in the 0-1, 226 in the 2-9, and 180 in the 10-18-year group). Two hundred ninety-three patients had C5-C6 lesions, 193 were discharged from follow-up, 83 of whom categorized as 'early discharged' (<1 year of age). Over the past year, 198 patients had contact with the expert team (49 in the 0-1, 81 in the 2-9, and 68 in the 10-18-year group) and 288 with at least one other health-care professional (53 in the 0-1, 133 in the 2-9, and 102 in the 10-18-year group). Of the 83 patients discharged early, 34 reported health-care use. Two hundred twenty-eight participants reported current information needs of whom 23 were discharged early. HCU and information needs of Dutch children with NBPP remains considerable even in children who were discharged. Stricter follow-up and information provision for these patients is needed. Show less
