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.

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.

The Impact of COVID-19 Pandemic on Patient Admissions to the Developmental Pediatrics Unit: An Outpatient Clinic in Eastern Turkey.

OBJECTIVE: The aim of this study was to analyze the impact of coronavirus disease 2019 pandemic on the number and diagnosis of patients admitted to the Developmental Pediatrics Unit. Materilas and Methods: We compared the number and the diagnosis of patients admitted to the Developmental Pediatrics Unit by using International Classification of Diseases and Related Health Problems 10th revision (ICD-10) codes of our institution's electronic health data before and after 18 months from March 16 2020, when coronavirus disease 2019 pandemic was declared in Turkey. Statistical analyses were performed by using International Business Machines Statistical Package for Social Sciences for windows version 22.0 (Armonk, NY) program. RESULTS: We found that the number of patients admitted to the Developmental Pediatrics Unit decreased during the pandemic period (pre-coronavirus disease 2019 n = 1107, during coronavirus disease 2019 n = 761). There was no significant difference between the ratio of the most common diagnosis (prematurity) before and during the pandemic period (32% and 30.6% respectively). It was observed that the ratio of children with speech delay (17.4%-23%, P = .003) increased during the pandemic, while there was a significant decrease in the ratio of admissions with Down syndrome (11.6%-6.6%, P < .001). CONCLUSION: We found that the number of admissions to the Developmental Pediatrics Unit with developmental difficulties decreased significantly during the pandemic. The ratio of admissions of speech delay increased during the same period, while admissions with Down syndrome decreased. This increase may be due to lockdown, increase in electronic screen exposure, and lack of stimuli and the decrease may be due to the risk of severe illness from coronavirus disease 2019. The decrease in admissions of patients who require developmental follow-up reveals the need for additional efforts such as implementing tele-health to our daily practice.

Chronic Disease Management of Children Followed with Type 1 Diabetes Mellitus

Objective: With the diagnosis of chronic illness in children, a stressful period is likely to begin for both the affected child and their families. The aim of this study was to investigate the factors affecting chronic disease management by the parents of children diagnosed with type 1 diabetes mellitus (T1DM). Methods: The sample consisted of 110 children, aged between 4-17 years and their mothers. The patients had been diagnosed with T1DM for at least one year, and had attended pediatric endocrinology outpatients or were hospitalized in a single center. First, sociodemographic information about the child with T1DM were obtained. Then, the "Family Management Measure" (FaMM) was applied. The FaMM is constructed to measure family functioning and management in families who have a child with a chronic illness. Results: Paternal years of education (p=0.036), family income (p=0.008), insulin pump use (p=0.011), and time elapsed after diagnosis (p=0.048) positively affected both the management of T1DM and the child's daily life. However, presence of chronic diseases in addition to T1DM (p=0.004) negatively affected diabetes management. Higher maternal education year (p=0.013) and family income level (p=0.001) increased parental mutuality scores. However, as the time after diagnosis increased, parental mutuality scores decreased. Conclusion: It is important to evaluate the child with chronic disease with a biopsychosocial approach. This approach aims to evaluate the problems of the child and his/her family who experience the disease with a holistic approach.

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.

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.