{"title":"Hyaline Fibromatosis Syndrome Diagnosed by Whole Genome Sequencing","authors":"","doi":"10.1016/j.pedhc.2024.01.005","DOIUrl":"10.1016/j.pedhc.2024.01.005","url":null,"abstract":"<div><p>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.</p></div>","PeriodicalId":50094,"journal":{"name":"Journal of Pediatric Health Care","volume":"38 5","pages":"Pages 769-774"},"PeriodicalIF":2.5,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0891524524000221/pdfft?md5=434bc0357d75ab12772be7db61e63969&pid=1-s2.0-S0891524524000221-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139933838","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Information for Readers","authors":"","doi":"10.1016/S0891-5245(24)00194-9","DOIUrl":"10.1016/S0891-5245(24)00194-9","url":null,"abstract":"","PeriodicalId":50094,"journal":{"name":"Journal of Pediatric Health Care","volume":"38 5","pages":"Page A12"},"PeriodicalIF":2.5,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142163719","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Building From Our Foundation","authors":"","doi":"10.1016/j.pedhc.2024.06.002","DOIUrl":"10.1016/j.pedhc.2024.06.002","url":null,"abstract":"","PeriodicalId":50094,"journal":{"name":"Journal of Pediatric Health Care","volume":"38 5","pages":"Pages 639-640"},"PeriodicalIF":2.5,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0891524524001457/pdfft?md5=0f36f4aa45a49414b9d8657582236324&pid=1-s2.0-S0891524524001457-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142163721","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Exploring the Depths of Sharenting: Unveiling the Impact of Sociodemographic Factors and Internet Addiction","authors":"Serhat Kılıç MD, Betül Orhan Kılıç MD, Eylem Gül Ateş PhD, Nisa Eda Çullas Ilarslan MD, Dilek Konuksever MD, Betül Ulukol MD","doi":"10.1016/j.pedhc.2024.05.011","DOIUrl":"10.1016/j.pedhc.2024.05.011","url":null,"abstract":"<div><h3>Introduction</h3><p>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.</p></div><div><h3>Method</h3><p>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.</p></div><div><h3>Results</h3><p>Out of 411 parents, 67.2% (<em>n</em> = 247) shared photographs of their children on social media, whereas 32.8% (<em>n</em> = 164) did not share. Significant associations were found between sharenting and factors such as younger age (B = −0.06, <em>p</em> = .002), lower bachelor's degree level (B = 0.87, <em>p</em> < .001), higher internet addiction (B = 0.05, <em>p</em> < .001), and longer social media use (B = 0.17, <em>p</em> < .001).</p></div><div><h3>Discussion</h3><p>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.</p></div>","PeriodicalId":50094,"journal":{"name":"Journal of Pediatric Health Care","volume":"38 5","pages":"Pages 643-650"},"PeriodicalIF":2.5,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142005727","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The Barriers to Shared Decision-making in Exercise Prescription for Children With Asthma: A Qualitative Study From Parents’ Perspective","authors":"","doi":"10.1016/j.pedhc.2024.01.001","DOIUrl":"10.1016/j.pedhc.2024.01.001","url":null,"abstract":"<div><h3>Introduction</h3><p>The knowledge of barriers from the parental perspective is essential for facilitating shared decision-making in the field of pediatric asthma.</p></div><div><h3>Method</h3><p>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.</p></div><div><h3>Results</h3><p>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.</p></div><div><h3>Discussion</h3><p>The findings would serve as crucial foundations for the development of decision-aid programs within the context of pediatric asthma.</p></div>","PeriodicalId":50094,"journal":{"name":"Journal of Pediatric Health Care","volume":"38 5","pages":"Pages 666-676"},"PeriodicalIF":2.5,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139677430","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Society Page","authors":"","doi":"10.1016/S0891-5245(24)00228-1","DOIUrl":"10.1016/S0891-5245(24)00228-1","url":null,"abstract":"","PeriodicalId":50094,"journal":{"name":"Journal of Pediatric Health Care","volume":"38 5","pages":"Page A10"},"PeriodicalIF":2.5,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142163718","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Disseminating Methods in Nursing Research","authors":"","doi":"10.1016/j.pedhc.2024.05.001","DOIUrl":"10.1016/j.pedhc.2024.05.001","url":null,"abstract":"<div><p>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<span> 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.</span></p></div>","PeriodicalId":50094,"journal":{"name":"Journal of Pediatric Health Care","volume":"38 5","pages":"Pages 747-750"},"PeriodicalIF":2.5,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141285225","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Pediatric Expert Researchers for JPHC","authors":"","doi":"10.1016/S0891-5245(24)00227-X","DOIUrl":"10.1016/S0891-5245(24)00227-X","url":null,"abstract":"","PeriodicalId":50094,"journal":{"name":"Journal of Pediatric Health Care","volume":"38 5","pages":"Page A9"},"PeriodicalIF":2.5,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S089152452400227X/pdfft?md5=2cd71829036b4a9194acf6558ec04adf&pid=1-s2.0-S089152452400227X-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142163717","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Recognizing Complications in Youth With Diabetes Admitted With Diabetic Ketoacidosis Versus Hyperglycemic Hyperosmolar State","authors":"","doi":"10.1016/j.pedhc.2023.12.012","DOIUrl":"10.1016/j.pedhc.2023.12.012","url":null,"abstract":"<div><h3>Introduction</h3><p>We compare in-hospital complications in youth with isolated diabetic ketoacidosis<span> (DKA) to youth with hyperosmolarity.</span></p></div><div><h3>Method</h3><p>We reviewed medical records<span><span> 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 </span>acute kidney injury (AKI).</span></p></div><div><h3>Results</h3><p><span>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 </span>serum osmolality and negatively associated with new-onset diabetes mellitus (DM) compared with established DM.</p></div><div><h3>Conclusions</h3><p>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.</p></div>","PeriodicalId":50094,"journal":{"name":"Journal of Pediatric Health Care","volume":"38 5","pages":"Pages 761-768"},"PeriodicalIF":2.5,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141421691","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Patricia E Hershberger, Valerie Gruss, Alana D Steffen, Kirby Adlam, Martha Driessnack, Harold D Grotevant, Susan C Klock, Lauri A Pasch, Ruchi Bhagat, Agatha M Gallo
{"title":"A Randomized Pilot Trial of the Donor Conception Tool to Empower Parental Telling and Talking (TELL Tool) with Their Children About Their Genetic Origins.","authors":"Patricia E Hershberger, Valerie Gruss, Alana D Steffen, Kirby Adlam, Martha Driessnack, Harold D Grotevant, Susan C Klock, Lauri A Pasch, Ruchi Bhagat, Agatha M Gallo","doi":"10.1016/j.pedhc.2024.06.006","DOIUrl":"10.1016/j.pedhc.2024.06.006","url":null,"abstract":"<p><strong>Introduction: </strong>Parents who use donated gametes or embryos to form their families struggle with telling their children about their genetic origins. We developed the Tool to Empower Parental Telling and Talking (TELL Tool) to support parents in disclosure to their children and an eBook attention control.</p><p><strong>Method: </strong>A randomized parallel, two-group, attention-controlled clinical pilot trial was conducted online during COVID-19. Feasibility, acceptability, and preliminary effects among parents with children aged 1-16 years were examined.</p><p><strong>Results: </strong>Over 10 months, our target of 75 parents were enrolled (85% of eligible [95% confidence interval (CI), 76% to 91%]), and 68% (95% CI: 57% to 78%) were retained at 12 weeks. At 4 and 12 weeks, positive trends were found for parental disclosure, telling confidence, and anxiety compared with attention controls.</p><p><strong>Discussion: </strong>The study protocol is feasible, and the TELL Tool is acceptable to parents and demonstrates a positive effect on parents' ability to tell their children. The results support the implementation of a large efficacy trial.</p>","PeriodicalId":50094,"journal":{"name":"Journal of Pediatric Health Care","volume":" ","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-07-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141635522","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}