Child Care Research Articles

The quality of nursing care in dying children from the nurses’ point of view in Iran: A cross-sectional study

BackgroundNowadays, the quality of nursing care is one of the most essential factors in health services and patient care. The quality of end-of-life care is of high importance, especially in vulnerable groups such as children. In the final stages of life, the needs of patients and their companions, as well as stressful conditions cause avoidance of participation in treatment, and dissatisfaction of caregivers which can reduce the quality of patient care. The present study aimed to examine the quality of nursing care in children from the point of view of nurses in hospitals related to Birjand, Iran. Materials and methodsThe present descriptive study was conducted on 350 nurses. The data collection tools used in this study were demographic questionnaire and Quality Patient Care Scale (QUALPAC). ResultsA total of 270 completed questionnaires were entered into the statistical analysis. The average quality of nursing care score in dying children was 266.17 ± 27.79. Also, the results of the present study showed that the gender, age, marital status, and work experience of nurses have no significant effect on the quality of nursing care in dying children from the nurses’ viewpoint. ConclusionThe quality of nursing care of dying children from the point of view of nurses was satisfactory. Nurses reported that the physical dimension of nursing care had the highest quality and the psychosocial dimension had the lowest quality. Therefore, psychological support and follow-ups for improving social support for these clients are suggested to the nursing managers and healthcare administrators.

Genetic testing for pediatric sensorineural hearing loss in the era of gene therapy.

To summarize indications, methods, and diagnostic yields for genetic testing for pediatric hearing loss. Genetic testing has become a cornerstone of clinical care for children with sensorineural hearing loss. Recent studies have shown the efficacy of gene panels and exome sequencing for any child with sensorineural hearing loss. Recent findings have underscored the importance of a diagnosis in clinical care. Clinical trials for gene therapy for hearing loss have begun. Genetic testing has become critical for personalized care for children with hearing loss. Recent studies have shown a 43% overall diagnostic yield for genetic testing for pediatric hearing loss, though the diagnostic yield may range from 10 to 60% depending on clinical features. Syndromic diagnoses comprise 25% of positive genetic tests for pediatric sensorineural hearing loss. While diagnostic yield is lower for children with unilateral or asymmetric sensorineural hearing loss, the likelihood of syndromic hearing loss finding is higher. An early and accurate genetic diagnosis is required for participating in clinical trials for gene therapy for hearing loss.

Upper tract dilation is an independent risk factor for febrile UTI in children with primary vesicoureteral reflux

BackgroundChildren with vesicoureteral reflux (VUR), particularly high-grade VUR, are known to be at increased risk for urinary tract infection (UTI). Current guidelines highlight certain clinical factors in the management of children with VUR; however, the clinical utility of upper tract dilation in the setting of VUR remains unclear. ObjectiveThe purpose of this study is to evaluate risk factors for febrile UTI (fUTI) in children with primary VUR in a modern cohort with emphasis on upper tract dilation parameters, including hydronephrosis and hydroureter. MethodsA prospectively maintained database of children with VUR at a single academic institution from July 2013 to February 2023 was reviewed. Demographic and clinical data were included. Ultrasounds closest to initial VCUG were reviewed for upper tract dilation, including the presence of hydronephrosis, Society of Fetal Urology (SFU) hydronephrosis grade, presence of hydroureter, and anterior-posterior renal pelvic diameter (APRPD). The primary outcome of interest was the development of a fUTI after VUR diagnosis. Patients were censored after their first fUTI or after VUR surgery. ResultsA total of 235 children with primary VUR were evaluated, including 125 (53.2%) females and 110 (46.8%) males. The median age of VUR diagnosis was 10.8 months (IQR: 2.3-63.6 months). A total of 41 (17.4%) children developed a fUTI after VUR diagnosis with a median follow up of 2.3 years (IQR: 0.9-4.6 years). On univariate analysis, variables found to be associated with fUTI included age < 1 year at VUR diagnosis (p=0.021), female sex (p=0.013), high-grade VUR (p=0.024), APRPD ≥ 7 mm (p=0.007), high-grade hydronephrosis (p=0.004), presence of hydronephrosis (p=0.029), and hydroureter (p=0.008). In children with VUR and high-grade hydronephrosis, a larger APRPD was associated with higher fUTI rates (p=0.008). On multivariate analysis controlling for age, sex, and VUR grade, APRPD ≥ 7 mm (OR 2.8, p=0.009), high-grade hydronephrosis (OR 2.5, p=0.025), and presence of hydronephrosis (OR 2.3, p=0.049) were independent risk factors for fUTI. On multivariate models controlling for other upper tract dilation parameters, APRPD ≥ 7 mm was the most significant parameter associated with increased fUTI risk in primary VUR. ConclusionUpper tract dilation is a novel, independent risk factor for fUTI in children with primary VUR, with APRPD being the strongest predictor. Clinicians may consider upper tract dilation parameters in addition to age, sex, and VUR grade when individualizing care in children with primary VUR.

Perioperative considerations for non-cardiac procedures in patients with congenital heart disease: A practical overview

Providing thorough care for children with congenital heart disease (CHD) undergoing non-cardiac surgery requires a strong understanding of common heart defects and the procedures used to treat them. To care for these patients, multidisciplinary teams must consider the severity of the underlying cardiac disease, comorbid conditions, and preoperative severity of illness. The American Heart Association's Scientific Statement on Perioperative Considerations for Pediatric Patients with Congenital Heart Disease Presenting for Noncardiac Procedures offers valuable guidance.

Kinder und Jugendliche mit Post-COVID-Syndrom: eine qualitative Studie zu Erfahrungen und Zufriedenheit mit der Versorgung in einem Modellprojekt in Bayern (Post-COVID Kids Bavaria)

BackgroundAgainst the background of inadequate healthcare provision for children and adolescents with post-COVID-19 syndrome (PCS), a model project was initiated in Bavaria (PoCoKiBa: Post-COVID Kids Bavaria), offering specialized diagnostics and care. The aim of this study was to explore and describe the experiences and satisfaction of children and adolescents with PCS, as well as their parents, with the healthcare provided in the model project. MethodsFrom October to December 2022, seven focus group discussions were conducted via video conference or in person with a total of 32 participants (19 children/adolescents, twelve mothers, one father). These represented 28 children and adolescents affected by PCS (aged 7 to 17 years). The focus group discussions were recorded, transcribed and analysed using qualitative content analysis. ResultsStudy participants talked about their experiences with the care they received within and beyond the model project, continuity of care, communication between doctors and patients, patient information, and the accompanying study. At the sites of the model project, patients found physicians who spent more time with their patients and took them seriously. Following diagnosis, some patients have benefited from recommendations for therapeutic services or everyday behaviours, while others complained about a lack of treatment suggestions or support for dealing with PCS in their everyday life. DiscussionThe experiences of study participants with the medical care of their PCS symptoms within or beyond the model project mirror the well-known challenges of healthcare provision. There is considerable room for improvement in the care of children and adolescents with PCS, particularly in the organization of the complex diagnostic process, which involves several organ systems, and in the provision of targeted information to patients and families affected. ConclusionThe supply of healthcare services, as established and offered in the PoCoKiBa model project, is crucial for families with a child affected by PCS, since it can offer expertise in diagnosis and treatment that is currently not available in routine health care.

Cost-Effectiveness And Health Impact Of Increasing Emergency Department Pediatric Readiness In The US.

The quality of emergency department (ED) care for children in the US is highly variable. The National Pediatric Readiness Project aims to improve survival for children receiving emergency services. We conducted a cost-effectiveness analysis of increasing ED pediatric readiness, using a decision-analytic simulation model. Previously published primary analyses of a nationally representative, population-based cohort of children receiving emergency services at 747 EDs in eleven states provided clinical and cost parameters. From a health care sector perspective, we used a 3percent annual discount rate and quantified lifetime costs, quality-adjusted life-years (QALYs), and incremental cost-effectiveness ratios (ICERs). We performed probabilistic, one-way, and subgroup sensitivity analyses. Increasing ED pediatric readiness yields 69,100 QALYs for the eleven-state cohort, costing $9,300 per QALY gained. Achieving high readiness nationally yields 179,000 QALYs at the same ICER (with implementation costs of approximately $260million). Implementing high ED pediatric readiness for all EDs in the US is highly cost-effective.

Families and Businesses in Delaware Share a Common Challenge: Child Care.

Families and Businesses in Delaware Share a Common Challenge: Child Care.

Pemeliharaan dan Pembiayaan Nafkah Anak Pasca Perceraian (Studi Kasus Putusan Nomor 590/Pdt.G/2019/PN.Bks)

Child care involves both parents, namely the father and mother, as parties who have responsibility for their children, even though some marriages end in divorce. This research aims to find out and examine how maintenance and financing of maintenance for children after divorce occurs according to statutory regulations. Child care after divorce is regulated in Law Number 35 of 2014 concerning Child Protection and Law Number 1 of 1974 concerning Marriage. The research method used is a normative or doctrinal juridical type, namely research that refers to legal norms contained in statutory regulations and norms that apply in community life. The research results in decision number 590/Pdt.G/2019/PN.Bks show that fulfilling children's maintenance after their parents' divorce has not gone completely well. This is because the ex-husband, after officially divorcing, no longer carries out his obligations. The conclusion in this problem is that child support is still not being met and it is necessary to establish an official institution so that there is supervision over the provision of child support after divorce, whether it has really been carried out in accordance with the governing law.

A Statewide Program to Test and Reduce Lead in Drinking Water at Schools and Child Cares.

A lead testing act was passed in Colorado mandating that all licensed child care facilities and public schools serving fifth grade and lower test all drinking water locations for lead by May 31, 2023. Colorado's Water Quality Control Division created the Test & Fix Water for Kids program to implement this act. Aspects of the program included establishing a database, outreach and education, technical assistance, lead analyses at the Colorado State Laboratory, remediation, and reimbursement. Of a total of 6000 licensed child care providers and public elementary schools, 4500 entities enrolled and tested 53 000 water samples for lead at drinking water fixtures. Testing results showed that 93% (46 000 total) of the fixtures tested were below the 5 parts per billion (ppb) action level. As a result, 7% (3700) of the fixtures tested were above the action level. Of the fixtures that tested above 5 ppb, 47% were classroom faucets. Many of these faucets had not been used since COVID-19 when several schools switched to using bottle fillers. The program identified all fixtures associated with low usage as well as older fixtures to be replaced with lead-free options to reduce lead levels below 5 ppb. Almost 600 000 children have been protected from potential exposure to lead in drinking water through this program. This article outlines the methods of launching a statewide lead testing program and the importance of testing fixtures for lead in drinking water in early childhood education buildings.

A scoping review of early childhood support for Aboriginal and Torres Strait Islander children living with a disability in regional, rural and remote settings.

Many experts and communities have concerns about how National Disability Insurance Scheme services are provided to Aboriginal and Torres Strait children. This study was undertaken at the request of the NPY Women's Council in partnership with the researchers, to explore supports for Aboriginal and Torres Strait Islander children living with a disability in their remote areas. This scoping review aims to (a) explore the barriers and enablers to accessing disability support services for families of young Aboriginal and Torres Strait Islander children (0-8 years) living in regional, rural and remote settings, and (b) summarise best practice approaches for accessing support for young children in these settings. The search was run in three electronic databases, as well as grey literature sources. We assessed the quality of included publications using the Centre of Research Excellence in Aboriginal Chronic Disease Knowledge Translation and Exchange tool. A narrative synthesis was supported by thematic analysis. From an initial search (557 citations), we identified 13 eligible documents. Most documents were peer-reviewed articles of qualitative studies. Key themes identified included the following: (1) Holistic approach, (2) Understanding disability, (3) Consistent relationships, (4), Flexibility, (5) Simplify system and (6) Enhance communication. This scoping review has revealed gaps in the provision of quality, culturally responsive disability services for families of Aboriginal and Torres Strait Islander children living in regional, rural and remote areas of Australia. A family-centred, flexible approach will help address their needs. Future research is required to design and evaluate models of care for Aboriginal and Torres Strait Islander children.

The Economic Burden of Childhood Ocular Morbidity in Bangladesh.

Childhood eye morbidity is a great public health problem, especially in low-income countries. This study aimed to determine the economic burden of childhood ocular morbidity on attending tertiary hospitals in Bangladesh. This study also assessed the catastrophic health expenditure (CHE) for childhood ocular morbidity in Bangladesh. A cross-sectional mixed method was used for this study from April to October 2023 at two tertiary hospitals in Bangladesh, one government-funded and one private. Face-to-face interviews using a semi-structured quantitative questionnaire with the caregivers/parents and in-depth interviews (IDIs) were conducted among the same respondents of these two hospitals, and a workshop was conducted with the stakeholders during the study period. This was the first study in Bangladesh to determine the cost of pediatric ocular morbidity. Among 335 patients, the total median direct cost at a single time was 3740 ± 18,285 BDT (34 ± 166.2 USD) at the government hospital and 7300 ± 40,630 BDT (66.36 ± 369.36 USD) at the private hospital. The disease-specific median overall cost from diagnosis of the disease was 65,000 BDT (591 USD) for squint, 50,000 BDT (454.54 USD) for cataract, and 30,000 BDT (272.72 USD) for eye injury. Almost 90% of the caregivers/parents faced CHE due to different pediatric ocular morbidity. These cost estimates can be used as an initial basis for financial decisions that aim to enhance access to care, management, and follow-up of children with ocular morbidity. These cost estimates also offer helpful information for organizational and financial sustainability initiatives. Policymakers can consider serious immediate interventions for securing ocular health services in Bangladesh and prevent families from CHE.

Association between Unmet Social Need and Ambulatory Quality of Care for US Children

ObjectivesChildren who experience socioeconomic adversity often have worse health; however, less is known about their quality of care. We sought to evaluate the association between parent/caregiver-reported socioeconomic adversity and quality of pediatric primary, acute, and chronic ambulatory care on a national level. MethodsThis was a retrospective cohort study of 5368 representative US children (1–17 years) in the 2021 Medical Expenditure Panel Survey. Socioeconomic adversity was defined as parent/caregiver-reported food, housing, transportation, or utility insecurity in the past 12 months. Outcomes included 10 quality measures of primary, acute, and chronic care, and experience of care measured through parent/caregiver survey. We described variation in socioeconomic adversity and used multivariable regression to examine associations with quality outcomes. ResultsOne-third of parent/caregivers reported socioeconomic adversity. Food insecurity (23.6%) was most common followed by utility (19.5%), housing (15.0%), and transportation (4.7%) insecurity. Black (53.2%) and Hispanic (46.9%) parent/caregivers experienced the highest rates of socioeconomic adversity. Children with socioeconomic adversity received lower quality of care for four quality measures, including more frequent Emergency Department visits (Odds Ratio (OR)= 1.69 [95% Confidence Interval (CI): 1.28–2.23]), less favorable asthma medication ratio (OR=0.04 [95% CI: 0.01–0.31]), and less frequent well child (OR=0.73 [95% CI: 0.59–0.90]) and dental care (OR=0.76 [95% CI: 0.63–0.94], P < .05 for all). There were no statistically significant differences in experience of care. ConclusionsSocioeconomic adversity is common among US children with disproportionate impact on Black and Hispanic families. There are significant disparities in pediatric primary, acute, and chronic care quality, based on parent/caregiver-reported socioeconomic adversity, highlighting the need for systems-level interventions.

Pediatrics ACES and related life event screener (PEARLS): translation, transcultural adaptation, and validation to Brazilian Portuguese

ObjectiveAdverse Childhood Experiences (ACEs) have been associated with negative health outcomes. Screening for ACEs is crucial for improving health results, however, there is a shortage of standardized tools designed for children in Brazilian Portuguese. This study aimed to translate, culturally adapt, and validate the Pediatrics ACES and Related Life Event Screener (PEARLS) for use in Brazil. MethodThe study followed a methodological design for cross-cultural adaptation and psychometric evaluation. The PEARLS was translated and culturally adapted following a methodology that includes translation, synthesis, expert committee evaluation, target audience evaluation, and back-translation. After adaptation, a pilot cross-sectional study was conducted at a Multidisciplinary Health Care Clinical Center and a General Hospital-Reference Center for Child and Adolescent Care to assess the instrument's internal consistency, convergent validity, content validity and test-retest reliability. ResultsThe PEARLS-Br versions for Children, Teens, and Teen Self-Report were developed and subjected to pilot testing with 202 subjects. Participants demonstrated excellent comprehension, with Verbal Rating Scale median scores of 4 (IQR 4–5). Internal consistency was high, with Cronbach's alpha coefficients ranging from 0.78 to 0.81. Content validity, assessed by Kappa, indicated slight to almost perfect agreement across constructs. Test-retest reliability, assessed by Spearman's correlation coefficient, ranged from 0.89 to 0.94. ConclusionsPEARLS-BR (Child, teen, and teen self-report versions) were successfully translated, culturally adapted, and validated for assessing ACEs in Brazilian children and adolescents. This tool fills a crucial gap in ACE assessment in the Brazilian context, aligning with global recommendations for screening ACEs to improve overall health outcomes.

344P DMD-YOUNG: paediatric palliative care for children with a slowly progressive neuromuscular disorder in transition to adulthood

344P DMD-YOUNG: paediatric palliative care for children with a slowly progressive neuromuscular disorder in transition to adulthood

233VP Review of inpatient care of children affected by neuromuscular disorders or complex neurodisability from the carer perspective

233VP Review of inpatient care of children affected by neuromuscular disorders or complex neurodisability from the carer perspective

Timely Hip Surgery Access in Children With Cerebral Palsy: Unaffected by Social Disadvantage at a Large Urban Safety Net Hospital.

Socioeconomic disadvantage has been shown to limit timely access to pediatric orthopaedic care and can result in poor surgical outcomes. Insurance coverage has often served as a proxy for socioeconomic status; however, area deprivation index (ADI) and child opportunity index (COI) are more comprehensive measures of social determinants of health (SDOH). The treatment of hip displacement in children with cerebral palsy (CP) requires early radiographic identification and continuous surveillance, which may be impacted by SDOH. This study seeks to evaluate the influence of insurance, ADI, and COI on preoperative Reimer migration percentage and need for pelvic osteotomy during varus derotation osteotomy (VDRO) in children with CP. This retrospective cohort study examined 219 patients with CP who underwent VDRO surgery for hip subluxation or dislocation at a tertiary referral center (135 male, mean age 7.9y, SD: 2.9, range: 2.4 to 17.2; 17 GMFCS II, 21 GMFCS III, 89 GMFCS IV, 92 GMFCS V) from 2004 to 2022. Imaging and clinical documentation for patients with CP and hip displacement, age <18 years with ≥1 year of follow-up, treated with VDRO were reviewed. GMFCS level, preoperative Reimer migration percentages (MP), surgical details, and demographic and socioeconomic data were collected, and addresses were used to determine ADI (2018 version) and COI (2.0 database). The relationship of ADI, COI, and insurance type to preoperative Reimer MP of the more displaced hip and the need for pelvic osteotomy were analyzed with linear regressions and logistic regressions. The mean preoperative Reimer MP was 64.4% (SD: 25.0, range: 0 to 100). As expected, patients functioning at higher GMFCS levels presented with greater Reimer MPs. The average Reimer MP was 34.0 for GMFCS II, 44.2 for GMFCS III, 64.6 for GMFCS IV, and 74.5 for GMFCS V (P<0.01). The mean ADI state decile (1 to 10 scale) and COI (1 to 100 scale) for the cohort were 5.6 (SD: 2.2, range: 1 to 10) and 37.2 (SD: 28.1, range: 4 to 100), respectively. ADI (P=0.77), COI (P=0.30), and insurance type (P=0.78) were not related to preoperative Reimer MP. However, patients with lower ADIs (OR 0.83, 95% CI [0.70, 0.99], P=0.04) and higher COIs (OR 1.01, 95% CI [1.00, 1.03], P=0.03) underwent pelvic osteotomies at a higher rate. ADI, COI, and insurance type were not related to preoperative Reimer MP. Interestingly, greater social disadvantage was associated with a lower frequency of pelvic osteotomy at the time of VDRO. Our data demonstrate that at our institution, greater social disadvantage does not result in limited access to timely orthopaedic care for children with CP. This is likely due to adequate governmental insurance coverage for children with neuromuscular disorders in this state and the active involvement of pediatric orthopaedic surgeons in government-sponsored clinics, including ongoing hip screening programs for children with CP. These results provide hope that healthcare disparities can potentially be mitigated.

Establishing Priorities for Epilepsy Care and Electroencephalogram Use in Low-Resource Settings.

We convened an electroencephalography and epilepsy think tank in Blantyre, Malawi, bringing together American pediatric neurologist clinical researchers and Malawian clinicians. We worked with the aim of improving care for children with seizures and epilepsy in southern Malawi. By sharing and discussing ideas, six United States-based researchers and six Malawian end users developed consensus for directions of both current and future clinical research activities. Compared with our previous use of informal one-to-one discussions to generate research ideas, we found the structured think tank useful for generating ideas and better establishing links between clinical researchers and those who will eventually use the results of their work. We hope that these new interactions will lead to a self-sustaining environment integrating clinical care and research, leading to improvements in brain health for the children of Malawi and integrating technology in the places where it will be most clinically useful.

Estimated value of productivity lost due to childhood chickenpox in the United Kingdom: a survey of parents.

While medical costs of chickenpox have been researched, little is known about indirect costs. Understanding total costs is important for decisions about vaccination. This study estimated the value of lost productivity of adults missing work to care for children with chickenpox. It comprised an international literature review, online survey of 1,526 parents of children aged 1 to 11 years, and computation of indirect costs of chickenpox in the UK. The survey covered chickenpox episodes amongst respondents' children, time children took off school/nursery, and work absenteeism by parents/caregivers caring for them. Respondents reported on 2,283 children, of whom 52% (1185/2283) experienced chickenpox. Almost half (591/1185) missed days of school/nursery, averaging 5.6 days missed. In 260 cases of 542 adults providing data with such a child, an adult missed work to care for the child. The daily value of this lost productivity was £170. There were approximately 200,000 GP consultations for chickenpox and 625,000 births annually, suggesting annual chickenpox incidence lies between these figures. The estimated annual UK productivity loss due to chickenpox is £20 -£70 million ($25-$90 million). Annual value of lost productivity due to chickenpox is in range £20 to £70 million.

Knowledge, Attitudes, and Practices Among Guardians of Boys Toward Concealed Penis.

Concealed penis (CP) is a condition involving a congenital abnormality of the external genitalia, wherein the penile shaft is partially or completely obscured by surrounding skin tissues, negatively affecting the psychological and physical health of children. The guardians, who are primarily responsible for the daily care of children, play a crucial role in the early detection of this condition. Therefore, this study aims to explore knowledge, attitude, and practices (KAP) toward CP among guardians of young boys; results would provide a theoretical basis for the development of health education programs. This web-based cross-sectional study was conducted among guardians of boys in the Department of Pediatric Surgery, local hospital between June 2023 and September 2023. A self-designed questionnaire was developed to collect demographic information of the guardians and to assess their knowledge, attitudes and practices toward CP. A total of 394 questionnaires were collected. Among the guardians, 143 (36.29%) of them were male, 375 (95.18%) were the parents of the children, 279 (70.81%) had a junior college or bachelor's degree, and 46 (11.68%) reported their children had CP. The knowledge, attitudes and practices scores were 4.00±2.00 (possible range: 0-7), 35.63±3.40 (possible range: 9-45), and 23.03±6.97 (possible range: 9-45), respectively. The structural equation model demonstrated that knowledge had direct effects on attitudes (β=0.63, p<0.001), and practices (β=0.81, p<0.001). Moreover, attitudes had direct effects on practices (β=0.43, p<0.001). This study found insufficient knowledge, positive attitudes, but poor practices toward the CP in guardians of boys, especially among participants from rural areas of families with lower income. It is recommended to tailor educational initiatives and implement strategies to bridge the knowledge-practice gap toward concealed penis in boys.

384P Functional Outcome Measures (FOMs) guiding clinical care of children with Duchenne muscular dystrophy

384P Functional Outcome Measures (FOMs) guiding clinical care of children with Duchenne muscular dystrophy