Journal of Pediatric Health Care最新文献

Introduction

Eosinophilic esophagitis (EoE) is a chronic inflammatory disease of the esophagus that can adversely affect the quality of life (QOL) in children. We aim to investigate the burden of EoE on the QOL in children aged 2–18 years and identify factors that influence their QOL.

Method

A multicenter cross-sectional study was conducted in six Saudi pediatric hospitals. Pediatric Quality of Life 3.0 EoE Module was used to measure the QOL of children with EoE.

Results

Thirty-six families (36 parents and 33 children) were enrolled. The most reported symptoms were vomiting (50%), dysphagia (44.4%), and food impaction (36.1%). The mean total score of the parent-proxy report of the Pediatric Quality of Life EoE was 82.9 ± 10.3 versus the children's self-reported score of 77.28 ± 13.6 (p = .043).

Discussion

Recurrent emergency department visits were associated with a lower QOL, and a positive family history of EoE was associated with a better QOL.

Category/Date

Clinical Research Podium Presentations: Current Topics in Pediatric Research. Presented at NAPNAP's 45^th National Conference on Pediatric Health Care, March 14, 2024.

Background

Parents of children with medical complexity (CMC) experience social hardships, financial strain, and demanding care. Research examining their mental health is limited.

Aims

This study examined relationships among financial resources, social support, parents’ workload and capacity to care for their CMC, and how these impact parental depressive symptoms, particularly when workload exceeds capacity.

Methods

A cross-sectional, correlational design was used in a national sample of 106 parents of CMC, recruited using social media after IRB approval. Pearson's correlation and multiple regression were used to examine relationships using well-validated, reliable instruments.

Results

Parent participants were white (84.9%), college educated (37.7%) mothers (98.1%), ranging from 23 to 47 years, residing in 40 of 50 states. CMC averaged 33.78 months of age, with 40.6% having 2-5 chronic conditions. CMC required an average of 8.57 weekly care coordination hours. Nearly 62% of parents reported clinically significant depressive symptoms. Higher financial resources were associated with lower workload (r = - 0.47, p <.001), higher capacity (r = .54, p < .001), and lower depressive symptom scores (r = - 0.56, p < .001). When workload exceeded capacity, it predicted parental depressive symptoms (Adj. R2 = .203, F (1, 104) = 27.714, p = < .001). The number of weekly hours parents coordinate care (β = .38, SE= .16, p = <.001) significantly contributed to depressive symptoms. Together social support, financial resources, workload, and capacity explained 32.4% of the variance in depressive symptoms, with financial resources being the strongest predictor.

Conclusions

In this sample of parents with CMC, depressive symptoms were common, and were associated with inadequate financial resources, high workload, and high care coordination hours. Results emphasize the importance of care coordination support and screening for depressive symptoms. Future research will include diverse samples and health literacy as a proxy for capacity.

Hyaline fibromatosis syndrome is an extremely rare autosomal recessive condition caused by biallelic pathogenic variants in the ANTXR2 gene that leads to abnormal growth of hyalinized fibrous tissue. Severity ranges from life-threatening intractable diarrhea, recurrent infection, and acute pain to milder disease resulting in skin lesions and less severe contractures. Here, we report the case of a 3-month-old female who presented with joint contractures and severe pain followed by failure to thrive. Diagnosis via ultra-rapid whole genome sequencing allowed our team to provide appropriate care and anticipatory guidance for this patient and family.

Introduction

The knowledge of barriers from the parental perspective is essential for facilitating shared decision-making in the field of pediatric asthma.

Method

Participants who were parents of children with a diagnosis of asthma were recruited, and in-depth, semistructured interviews were conducted. The interview transcripts were analyzed thematically using framework methods.

Results

Seventeen participants undertook interviews. Three themes and nine subthemes emerged: (1) decision-making need level—limited understanding of decision-making knowledge, ambiguity regarding self-empowerment roles, and lack of family member support; (2) decision-making support level—insufficient ability to evaluate information, inefficient communication with health care professionals, and excessive use of professional terminology; and (3) decision-making outcome level—doubts about the final decision-making choices, time constraints on decision-making, and absence of mechanisms to track decisions made.

Discussion

The findings would serve as crucial foundations for the development of decision-aid programs within the context of pediatric asthma.

Introduction

This study explored sharenting's impact on children's privacy and factors influencing parental sharing. Limited knowledge raises concerns about children's rights in this growing phenomenon.

Method

A quasi-experimental cross-sectional study included 411 parents (372 females, 39 males) with a mean age of 38.5 ± 10.5 years. Chi-square tests analyzed group differences; regression assessed the “sharenting practice” impact.

Results

Out of 411 parents, 67.2% (n = 247) shared photographs of their children on social media, whereas 32.8% (n = 164) did not share. Significant associations were found between sharenting and factors such as younger age (B = −0.06, p = .002), lower bachelor's degree level (B = 0.87, p < .001), higher internet addiction (B = 0.05, p < .001), and longer social media use (B = 0.17, p < .001).

Discussion

Understanding factors in sharenting's impact on children's rights is crucial. Our findings suggest sociodemographic factors, internet addiction, and social media duration influence sharenting. Health professionals can guide parents on responsible social media usage and digital literacy to protect their children's online privacy.

Research methods papers are a valuable resource to researchers and clinicians that highlight novel yet effective methodologies and approaches to conducting research. Clinicians can use the knowledge generated from unique research methods to conduct quality, evidence-based practice, and quality improvement projects, and nurse researchers can benefit from the lessons learned by others to improve the rigor of future studies. This paper defines research methods papers, provides an overview of their importance, including examples from the literature, and highlights important considerations when writing and disseminating the findings of research methods.

Introduction

We compare in-hospital complications in youth with isolated diabetic ketoacidosis (DKA) to youth with hyperosmolarity.

Method

We reviewed medical records of youth (1–20 years) admitted over two years with DKA, hyperglycemic hyperosmolar state (HHS), and hyperosmolar DKA. We evaluated outcomes, including hospital length of stay, altered mental status (AMS), and acute kidney injury (AKI).

Results

Of 369 admissions, 334 had isolated DKA, 32 had hyperosmolar DKA, and three had isolated HHS. Hyperosmolar youth had longer length of stay, larger initial fluid boluses, more frequent pediatric intensive care unit admissions, and increased risk of AKI and AMS. The odds of AKI were positively associated with serum osmolality and negatively associated with new-onset diabetes mellitus (DM) compared with established DM.

Conclusions

In youth with DM, hyperosmolarity increases acute complications compared with isolated DKA. Larger-scale studies are needed to identify ways to prevent acute complications in youth experiencing hyperglycemic emergencies.