Overprotection and the psychological states of cerebral palsy patients and their caretakers in Hong Kong: A preliminary report

Objective: To examine the relation between perceived overprotection and the psychological states of cerebral palsy patients and their primary caretakers in Hong Kong. Design: Cross-sectional survey, in which data of 14 pairs of cerebral palsy patients and their caretakers were analysed. Setting: Duchess of Kent Children's Hospital, Hong Kong. Participants: Cerebral palsy patients and their primary caretakers in Hong Kong. Main outcome measures: Perceived overprotection and psychological states. Results: Nearly two thirds of the 14 patients (mean age of 15 years) and 86% of the 14 primary caretakers (mean age of 47 years) perceived various levels of overprotection. For both patients and caretakers, perceived overprotection was positively associated with anxiety and unhappiness. The patients' and caretakers' psychological states and perception of overprotection were not related to the actual motor ability of the patients. Perceived overprotection of the patients was not related to that of the caretakers. Conclusion: Caretakers should be mindful that a well-meaning move may have undesirable consequences. More support and child-rearing education should be considered for caretakers.published_or_final_versio

Mortality from gastrointestinal congenital anomalies at 264 hospitals in 74 low-income, middle-income, and high-income countries: a multicentre, international, prospective cohort study

Background: Congenital anomalies are the fifth leading cause of mortality in children younger than 5 years globally. Many gastrointestinal congenital anomalies are fatal without timely access to neonatal surgical care, but few studies have been done on these conditions in low-income and middle-income countries (LMICs). We compared outcomes of the seven most common gastrointestinal congenital anomalies in low-income, middle-income, and high-income countries globally, and identified factors associated with mortality. // Methods: We did a multicentre, international prospective cohort study of patients younger than 16 years, presenting to hospital for the first time with oesophageal atresia, congenital diaphragmatic hernia, intestinal atresia, gastroschisis, exomphalos, anorectal malformation, and Hirschsprung's disease. Recruitment was of consecutive patients for a minimum of 1 month between October, 2018, and April, 2019. We collected data on patient demographics, clinical status, interventions, and outcomes using the REDCap platform. Patients were followed up for 30 days after primary intervention, or 30 days after admission if they did not receive an intervention. The primary outcome was all-cause, in-hospital mortality for all conditions combined and each condition individually, stratified by country income status. We did a complete case analysis. // Findings: We included 3849 patients with 3975 study conditions (560 with oesophageal atresia, 448 with congenital diaphragmatic hernia, 681 with intestinal atresia, 453 with gastroschisis, 325 with exomphalos, 991 with anorectal malformation, and 517 with Hirschsprung's disease) from 264 hospitals (89 in high-income countries, 166 in middle-income countries, and nine in low-income countries) in 74 countries. Of the 3849 patients, 2231 (58·0%) were male. Median gestational age at birth was 38 weeks (IQR 36–39) and median bodyweight at presentation was 2·8 kg (2·3–3·3). Mortality among all patients was 37 (39·8%) of 93 in low-income countries, 583 (20·4%) of 2860 in middle-income countries, and 50 (5·6%) of 896 in high-income countries (p<0·0001 between all country income groups). Gastroschisis had the greatest difference in mortality between country income strata (nine [90·0%] of ten in low-income countries, 97 [31·9%] of 304 in middle-income countries, and two [1·4%] of 139 in high-income countries; p≤0·0001 between all country income groups). Factors significantly associated with higher mortality for all patients combined included country income status (low-income vs high-income countries, risk ratio 2·78 [95% CI 1·88–4·11], p<0·0001; middle-income vs high-income countries, 2·11 [1·59–2·79], p<0·0001), sepsis at presentation (1·20 [1·04–1·40], p=0·016), higher American Society of Anesthesiologists (ASA) score at primary intervention (ASA 4–5 vs ASA 1–2, 1·82 [1·40–2·35], p<0·0001; ASA 3 vs ASA 1–2, 1·58, [1·30–1·92], p<0·0001]), surgical safety checklist not used (1·39 [1·02–1·90], p=0·035), and ventilation or parenteral nutrition unavailable when needed (ventilation 1·96, [1·41–2·71], p=0·0001; parenteral nutrition 1·35, [1·05–1·74], p=0·018). Administration of parenteral nutrition (0·61, [0·47–0·79], p=0·0002) and use of a peripherally inserted central catheter (0·65 [0·50–0·86], p=0·0024) or percutaneous central line (0·69 [0·48–1·00], p=0·049) were associated with lower mortality. // Interpretation: Unacceptable differences in mortality exist for gastrointestinal congenital anomalies between low-income, middle-income, and high-income countries. Improving access to quality neonatal surgical care in LMICs will be vital to achieve Sustainable Development Goal 3.2 of ending preventable deaths in neonates and children younger than 5 years by 2030

The development of a strength-focused mutual support group for caretakers of children with cerebral palsy

Objective: To examine the efficacy of a strength-focused mutual support group for reducing stress and enhancing psychological well-being of the caretakers of children with cerebral palsy. Methods: This pre- and post-intervention outcome study, conducted by Department of Orthopaedics and Traumatology, Duchess of Kent Children's Hospital, recruited 12 primary caretakers of children with cerebral palsy in Hong Kong. A strength-focused support group manual was developed to help such caretakers to identify and cultivate the character strengths of their children and enhance their own positive emotions. Participants were asked to complete a full set of questionnaires at 3 time-points: before and immediately after the intervention (consisting of 4 weekly sessions), and after the 1-month follow-up booster session. Two additional questionnaires were administered before each session to check mood. Parenting stress, anxiety, depression, social support, hope, and other psychological well-being measures were also assessed. Results: Half of the caretakers (n = 6) who had attended the full intervention programme were included in the data analysis. Participants exhibited a significantly lower level of parental stress and higher hope level both after the 4 intervention sessions and at the booster session. Their perceived social support was significantly increased when the group was ongoing but not after it ended. Conclusion: This group intervention programme could effectively help caretakers reduce their parenting stress and enhance their hopefulness. Launching a similar programme with more sessions and regular follow-up sessions might help maintain positive effects and establish a social support network. © 2011 Hong Kong College of Psychiatrists.link_to_OA_fulltex