Neurodevelopmental evaluation of newborns who underwent hypothermia with a diagnosis of hypoxic ischemic encephalopathy based on the Bayley-III scale.

Background/aim: Hypoxic ischemic encephalopathy (HIE) is one of the common causes of mortality and morbidity in newborns. Despite therapeutic hypothermia, an important treatment with proven efficacy, the morbidity and mortality rates remain high. The aim of this study was to neurodevelopmentally evaluate patients who underwent therapeutic hypothermia. Material and method: Included herein were patients who underwent hypothermia between 2018 and 2020. Their medical files were reviewed retrospectively, and their demographic and clinical information was recorded. Patients whose contact information was available were called to the developmental pediatrics outpatient clinic for a neurodevelopmental evaluation. The Bayley Scales of Infant and Toddler Development 3rd Edition (Bayley-III) was used as the evaluation tool. Laboratory values and clinical parameters of the patients were further analyzed. Results: It was found that 42 patients underwent hypothermia in 3 years, of whom 14 (33.3%) had died. Of the 28 patients who were discharged, 20 children could be reached, and a neurodevelopmental evaluation was performed. Developmental delay in the cognitive area was detected in 11 (55%) patients, delay in the language area was found in 9 (45%) patients, and delay in the motor area was found in 11 (55%) patients. The correlation and regression analysis results determined that the time to start cooling was the most effective common factor in all 3 fields of scoring. Conclusion: The time to start cooling is related to the neurodevelopmental outcomes of patients with HIE. The earlier cooling is started, the better the neurodevelopmental results. Despite therapeutic hypothermia, the neurodevelopmental development of infants may be adversely affected. These patients should be followed-up neurodevelopmentally for a long time.

Developmental characteristics of Williams-Beuren syndrome and evaluation of adaptive behavioral skills.

Background/aim: Williams-Beuren syndrome (WBS) is a rare genetic disorder with delays in language and cognitive development, but, with increased awareness of clinical features and a reliable diagnostic test, WBS is becoming more widely recognized in childhood. Adaptive behavior skills and/or maladaptive behavior are important for the prognosis of individuals with WBS. The aim of this study was to investigate the clinical and developmental characteristics of patients with WBS and further increase awareness about it by evaluating the adaptive skills and maladaptive behaviors of the patients. Materials and methods: The data of WBS patients followed-up at the Developmental Behavioral Pediatrics Unit were reviewed. Patient data on perinatal and postnatal history, developmental stages, physical and neurological examination findings were collected. The International Guide for Monitoring Child Development (GMCD) was administered to each child. In addition, semistructured interviews were conducted with the parents using the Vineland Adaptive Behavior Scales, Second edition (Vineland-II). Results: A total of 12 patients diagnosed with WBS via detection of the 7q11.23 deletion, of whom 6 were girls, were retrospectively reviewed. The mean age at the time of review was 54.6 ± 32.5 months. The mean age at first presentation to the Developmental Behavioral Pediatrics Outpatient Clinic was 15 ± 11.5 months. In the first developmental evaluation using the GMCD, there was a delay in fine and gross motor domains in 6 patients, in the language domains in 4 patients, and in all of the domains in 2 patients. Findings with Vineland-II showed socialization and communication domains as strengths, but the daily living skills and motor skills domains were weaknesses. In terms of maladaptive behavior, the patients tended to frequently have behavioral problems, neurodevelopmental disease, anxiety disorders, eating problems, and sleeping problems. Conclusion: This retrospective review of 12 patients indicated a general delay in overall development, and confirmed impairment in both adaptive and maladaptive functioning in WBS.

Caregiver Burden and Depression in Parents of Children with Chronic Diseases.

OBJECTIVE: Caregiver burden is a factor that caregivers undertake for patients with chronic diseases and individuals in need of care. Depending on the symptoms of the disease and the processes following the diagnosis, depression problems may develop in caregivers. In this study, it was aimed at determining the caregiving burden of parents who have children with chronic diseases, the condition of special needs, and the factors that affect this burden. MATERIALS AND METHODS: This study is a descriptive cross-sectional study conducted with 206 parents of children who had been diagnosed with a chronic disease for at least 1 year. The sociodemographic data, the Patient Health Questionnaire 2 and 9, and the Burden Scale for Family Caregivers were provided to the parents. RESULTS: Eighty-four of the participants had little or no caregiver burden, while 122 had moderate and severe caregiver burden. The mean caregiving burden score of mothers was higher (P = .004). Fathers' caregiver burden scores varied depending on the level of education (P = .031). Caregiving burden score was found to differ according to income level (P < .001). The mean caregiving burden score of individuals with chronic disease in the family was higher (P < .001). It was determined that individuals with higher Patient Health Questionnaire 2 and 9 scores and those who did not receive psychological support were higher (P < .001). CONCLUSION: Parents who are providing care for children with chronic diseases should be supported and closely monitored for signs of depression. Cite this article as: Güven Baysal S, Çorabay S. Caregiver burden and depression conditions in parents of children with chronic diseases. Turk Arch Pediatr. 2024;59(1):70-77.

Shared Reading of the Families With the Children With Chronic Disease.

The aim of the study is to evaluate shared reading of families of children with chronic diseases. The mothers of children aged 2 to 6 years with chronic health problems who applied to the pediatric outpatient clinic between January and May 2022 were the study group, and the mothers of children with an acute health problem were the control group. The sociodemographic information form and "Child-Parent Shared Reading Activities Scale" were applied. At the end of the interview, 3 questions about shared reading were asked. A total of 187 children were enrolled in the study: 92 and 95 in the chronic disease group and control group, respectively. 57.6% of mothers of chronically ill children reported that the parents almost never did shared reading with their child. It was found that all mothers knew the importance of reading, but they could not support especially in the risky chronic disease group.