Journal of Pediatric Nursing-Nursing Care of Children & Families最新文献

{"title":"A comparison of early childhood obesity prevention in Australian general practice and child and family health settings: A mixed methods study","authors":"Eve T. House ,&nbsp;Erin Kerr ,&nbsp;Sarah Taki ,&nbsp;Elizabeth Denney-Wilson ,&nbsp;Louise A. Baur ,&nbsp;Heilok Cheng ,&nbsp;Chris Rossiter ,&nbsp;Sharlene Vlahos ,&nbsp;Li Ming Wen","doi":"10.1016/j.pedn.2025.01.021","DOIUrl":"10.1016/j.pedn.2025.01.021","url":null,"abstract":"<div><h3>Objectives</h3><div>We aimed to 1) understand and compare the knowledge, self-efficacy, practices, and attitudes of primary health professionals (PHPs) in general practice and child and family health settings regarding early childhood health promotion and obesity prevention, and 2) describe barriers and facilitators to embedding preventive care in these settings.</div></div><div><h3>Methods</h3><div>From August 2022 to July 2023, PHPs were recruited to participate in a mixed methods study, 227 PHPs completed a 20-item online survey and 28 participated in semi-structured interviews. Most were female, and almost half were Child and Family Health Nurses. Quantitative data were analysed descriptively, using Chi-squared or Fisher's exact tests to compare responses of Child and Family Health Nurses and PHPs in general practice. Reflexive thematic analysis of qualitative data was conducted.</div></div><div><h3>Results</h3><div>Child and Family Health Nurses engaged in health promotion activities (including growth assessment, and discussions of infant feeding and childhood nutrition) more frequently and were more confident doing so than general practice professionals. The latter also agreed with more statements inconsistent with current health promotion recommendations and were less likely to report having sufficient time to discuss healthy lifestyle behaviours with families. At interview professionals considered health promotion and obesity prevention an important component of their role. Organisational barriers, including limited time and staffing challenges, limit opportunities for engagement in early childhood obesity prevention.</div></div><div><h3>Conclusions</h3><div>PHPs require support to implement preventive care guidelines in routine practice. Professional education accompanied by organisational changes are required to support implementation of obesity prevention strategies in primary healthcare.</div></div><div><h3>Implications to practice</h3><div>There are many barriers to the implementation of early childhood obesity prevention in Australian primary healthcare. PHPs require training and resourcing to increase capacity to embed early childhood obesity prevention in their routine care.</div></div>","PeriodicalId":48899,"journal":{"name":"Journal of Pediatric Nursing-Nursing Care of Children & Families","volume":"81 ","pages":"Pages 97-107"},"PeriodicalIF":2.1,"publicationDate":"2025-01-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143075956","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":"“I'm not sad anymore, I'm proud to have such a child”: The experiences of caregivers of dependents with cerebral palsy living in Greece","authors":"Angeliki Bistaraki PhD ,&nbsp;Nikos Stefanopoulos PhD ,&nbsp;Panagiotis Kiekkas PhD ,&nbsp;Dimitra Stamatopoulou MSc, RN ,&nbsp;Michael Igoumenidis PhD","doi":"10.1016/j.pedn.2024.12.007","DOIUrl":"10.1016/j.pedn.2024.12.007","url":null,"abstract":"<div><h3>Background</h3><div>People with cerebral palsy are largely dependent on their caregivers, who are most often members of their family. Caring for people with disabilities can be challenging as both dependents and caregivers face problems of social isolation and stigmatization.</div></div><div><h3>Aim</h3><div>The aim of this study was to understand the experiences of caregivers of dependents with cerebral palsy in Greece.</div></div><div><h3>Methods</h3><div>We conducted a qualitative study utilizing a descriptive phenomenological design. A purposive sample of 20 caregivers was employed and data was collected through semi-structured in-depth interviews. Data analysis was conducted using the 7 steps of Colaizzi's method.</div></div><div><h3>Results</h3><div>Three themes emerged from the data analysis: a) family cohesion and emotional status, b) social and professional support and c) facing stigma. All caregivers reported negative feelings such as sadness, disappointment, fear and anger and agreed that the region of Western Greece lacks appropriate infrastructure for people with cerebral palsy. Most of the participants exhibited high levels of internalized shame in the sense that the stigma attached to their child led to feelings of self-blame.</div></div><div><h3>Conclusion</h3><div>This study suggests that it is important to develop structural and community interventions to support carers and establish new strategies for better educated and empathetic nurses and other health professionals.</div></div>","PeriodicalId":48899,"journal":{"name":"Journal of Pediatric Nursing-Nursing Care of Children & Families","volume":"81 ","pages":"Pages 89-96"},"PeriodicalIF":2.1,"publicationDate":"2025-01-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143060709","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":"Moderating effects of screen time on the relationship between family functioning and negative emotions in Chinese children with cancer","authors":"Jia Xu ,&nbsp;Ping Yan ,&nbsp;Guiyuan Ma ,&nbsp;Zixuan Liu ,&nbsp;Tianruixue Zhang ,&nbsp;Li Liu ,&nbsp;Can Gu","doi":"10.1016/j.pedn.2025.01.019","DOIUrl":"10.1016/j.pedn.2025.01.019","url":null,"abstract":"<div><h3>Purpose</h3><div>To explore whether screen time moderates the relationship between family functioning and negative emotions in Chinese children with cancer.</div></div><div><h3>Methods</h3><div>Between November 2023 and May 2024, 206 children with cancer were recruited from a pediatric oncology ward at a tertiary hospital. Negative emotions, family functioning, and screen time were assessed using the Depression Anxiety Stress Scale-21, Family Adaptability and Cohesion Evaluation Scales, Second Edition, Chinese Version, and Screen Time Questionnaire, respectively. The moderating effect of screen time was analyzed using the Johnson-Neyman method and SPSS Process Macro.</div></div><div><h3>Results</h3><div>Screen time had a significant moderating effect (B = ‐0.052, <em>P</em> &lt; 0.05). Screen time could possibly moderate the relationship between family functioning and negative emotions, and the moderating effect may be diminished as screen time exceeded 3.13 h per day.</div></div><div><h3>Conclusions</h3><div>Family functioning and screen time likely have a vital impact on negative emotions in children with cancer. Increasing screen time probably decrease the adverse effects of poor family functioning on negative emotions, which, in turn, may reduce negative emotions.</div></div><div><h3>Practice implications</h3><div>These preliminary findings highlight the importance of monitoring and managing screen time in pediatric oncology settings may have in supporting the emotional well-being of children with cancer. This study provides a new theoretical perspective on care programs aimed at alleviating negative emotions in children with cancer.</div></div>","PeriodicalId":48899,"journal":{"name":"Journal of Pediatric Nursing-Nursing Care of Children & Families","volume":"81 ","pages":"Pages 83-88"},"PeriodicalIF":2.1,"publicationDate":"2025-01-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143048390","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":"Nurses' experiences of cross-cultural care encounters in Swedish pediatric hospital care: A qualitative study","authors":"Azar G. Tavallali ,&nbsp;Maria Jirwe ,&nbsp;Åsa Johansson Stark ,&nbsp;Jeanette Eckerblad","doi":"10.1016/j.pedn.2025.01.014","DOIUrl":"10.1016/j.pedn.2025.01.014","url":null,"abstract":"<div><h3>Purpose</h3><div>Nurses are expected to provide appropriate care for children from diverse cultural backgrounds to achieve the aims of current legislation on good care and to ensure equal terms for the entire population. This study aim was to describe nurses' experiences of cross-cultural care encounters when interacting with children and families with a Culturally and Linguistically Diverse background in Swedish pediatric hospital care.</div></div><div><h3>Design and methods</h3><div>A descriptive qualitative study was conducted. Individual semi-structured online interviews were performed with 21 nurses in pediatric care from six university hospitals.</div></div><div><h3>Results</h3><div>Two themes were identified, (I) the importance of culturally competent care, with two sub-themes, (i) the significance of open-mindedness and cultural understanding, (ii) the significance of organizational support, and (II) the importance of effective communication, with three sub-themes, (i) the influence of language barriers, (ii) the importance of using communication tools and strategies and (iii) the influence of socio-cultural differences.</div></div><div><h3>Conclusions</h3><div>The findings provide further insight into the facilitators and barriers of cross-cultural care encounters in pediatric hospital care. Interactions with families from culturally and linguistically diverse backgrounds offer opportunities to enhance understanding of cultural differences and promote cultural awareness. Facilitating cross-cultural care encounters in pediatric hospital care requires cultural competence, mutual respect, and sufficient organizational support.</div></div><div><h3>Implications for practice</h3><div>The findings have implications for nursing practice, particularly in improving nurses' understanding of the diverse opportunities and challenges related to cultural and linguistic diversity in pediatric care, and in improving family-centered care.</div></div>","PeriodicalId":48899,"journal":{"name":"Journal of Pediatric Nursing-Nursing Care of Children & Families","volume":"81 ","pages":"Pages 74-82"},"PeriodicalIF":2.1,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143042702","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":"Efficiency of immersive virtual reality game technology on pain management in children with limb fractures: A randomized controlled trial","authors":"Fan Bai ,&nbsp;Yuan Xue ,&nbsp;Qian Zhang ,&nbsp;Hong Cheng ,&nbsp;Jinli Guo","doi":"10.1016/j.pedn.2025.01.007","DOIUrl":"10.1016/j.pedn.2025.01.007","url":null,"abstract":"<div><h3>Background</h3><div>Children with fractured limbs usually have moderate to high pain, and distraction can help reduce their pain and anxiety. Virtual reality technology is an emerging method of distraction. We investigated whether the use of immersive virtual reality gaming technology to treat perioperative pain in children with school-age limb fractures effectively.</div></div><div><h3>Method</h3><div>Ninty-nine patients who had limb fracture surgery between October 2021 and September 2022 were randomly assigned to receive immersive virtual reality game therapy (Group A), non-immersive virtual reality game therapy (Group B), or conventional treatment group (Group C). Changes in pain, anxiety, fear, and biochemical markers were assessed at various time points in the three groups using subjective and objective rating scales.</div></div><div><h3>Results</h3><div>Both Group A and Group B consistently showed lower pain scores, fear levels, and anxiety levels compared to Group C after surgery, statistical analysis revealed significant differences among the three groups (<em>p</em> &lt; 0.001). Additionally,serum levels in group A were significantly lower than those in other groups, showing a notable statistical discrepancy (<em>p</em> &lt; 0.001).</div></div><div><h3>Conclusion</h3><div>Both immersive and non-immersive virtual reality gaming significantly reduce perioperative pain, fear, and anxiety in children with limb fractures, and have practical significance for pain management of pediatric orthopedic patients. Immersive virtual reality, however, appears to have a more pronounced effect.</div><div>Clinical Trial Registration: The trial was registered prior to patient enrollment at the Chinese Clinical Trial Registry(ChiCTR210004583).</div></div>","PeriodicalId":48899,"journal":{"name":"Journal of Pediatric Nursing-Nursing Care of Children & Families","volume":"81 ","pages":"Pages 68-73"},"PeriodicalIF":2.1,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143042693","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 outcomes of implementing clinical guidelines to manage pediatric diabetic ketoacidosis in emergency department","authors":"Majdi Younis ,&nbsp;Ahmad Ayed ,&nbsp;Ahmad Batran ,&nbsp;Mohammed A.L. Bashtawy ,&nbsp;Yahya Najjar ,&nbsp;Osama Alkouri ,&nbsp;Aaliyah Momani ,&nbsp;Abdulqadir J. Nashwan ,&nbsp;Anas Ababneh","doi":"10.1016/j.pedn.2025.01.015","DOIUrl":"10.1016/j.pedn.2025.01.015","url":null,"abstract":"<div><h3>Background</h3><div>Type 1 diabetes is the most common endocrine health condition among youth. Healthcare professionals must consider evidence-based guidelines in managing children and adolescents with diabetic ketoacidosis (DKA). The current study aims to assess the outcomes of implementing clinical guidelines by the American Diabetes Association to manage DKA among pediatrics in an emergency department in Palestine.</div></div><div><h3>Methods</h3><div>A prospective cohort study was conducted among 60 children (&lt;12 years old) with type 1 diabetes mellitus with DKA throughout February to May 2021. The children were assessed on arrival and during the next 6 h for implementing the recommended guidelines of DKA management (e.g., fluids and insulin therapy). The assessment included measurement of vital signs (blood pressure, heart rate, respiratory rate, O₂ saturation), PH, HCO3-, and random blood glucose (RBG). A repeated-measure ANOVA was used to detect the difference between outcome measures during the follow-up period.</div></div><div><h3>Results</h3><div>After implementing the recommended guidelines of DKA management, all vital signs improved significantly in the follow-up period (<em>p</em> &lt; 0.05). Also, PH, HCO₃-, and random blood glucose (RBG) were significantly enhanced in the follow-up period (p &lt; 0.05) among children with DKA.</div></div><div><h3>Conclusion</h3><div>The study demonstrated that the recommended DKA management guidelines effectively managed children with DKA in emergency departments. Healthcare professionals should adhere to the guidelines when treating children with DKA.</div></div>","PeriodicalId":48899,"journal":{"name":"Journal of Pediatric Nursing-Nursing Care of Children & Families","volume":"81 ","pages":"Pages 63-67"},"PeriodicalIF":2.1,"publicationDate":"2025-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143034678","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":"Development and validation of the infant nursing assessment scale: Results from exploratory factor analysis and Rasch modeling","authors":"Matteo Danielis,&nbsp;Martina Dato,&nbsp;Renzo Zanotti,&nbsp;Elena Biasin,&nbsp;Mayra Veronese","doi":"10.1016/j.pedn.2025.01.018","DOIUrl":"10.1016/j.pedn.2025.01.018","url":null,"abstract":"<div><div><em>Purpose</em>: The primary challenge in infant care is developing a comprehensive, rapid, and reliable assessment tool that is minimally dependent on subjective evaluations and applicable in various inpatient settings. This study aims to develop and assess the structural validity of the Infant Nursing Assessment Scale (INA), enabling a comprehensive evaluation of hospitalized newborns and infants.</div><div><em>Design and methods</em>: A development and validation study based on cross-sectional design was undertaken. The study included the conceptualization and validation of the INA scale through qualitative expert interviews, followed by a pilot study and psychometric evaluation using exploratory factor analysis and Rasch analysis. The INA scale comprises three subscales: Functionality, Breastfeeding, and Parental-infant relationship dynamics, encompassing 22 items.</div><div><em>Results</em>: The study included 319 valid measurements, with significant score decreases from admission to discharge in most items, indicating the scale's sensitivity to clinical status changes. Factor analysis revealed strong structural validity while the Rasch analysis revealed optimal Infit and Outfit Mean-Square values for most items. Items Sensorium and Mother's substance use did not show significant changes and were considered for removal. The scale's internal consistency was acceptable, with Cronbach's Alpha values ranging from 0.59 to 0.74 across subscales.</div><div><em>Conclusions</em>: The INA scale is a reliable instrument for assessing the comprehensive needs of hospitalized infants, supporting targeted nursing interventions and enhancing the quality of pediatric care. The study confirms the INA scale's validity and reliability, highlighting its potential for broader application in various in-hospital clinical settings.</div></div>","PeriodicalId":48899,"journal":{"name":"Journal of Pediatric Nursing-Nursing Care of Children & Families","volume":"81 ","pages":"Pages 55-62"},"PeriodicalIF":2.1,"publicationDate":"2025-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143034677","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":"Parental neglect and social media addiction of adolescents: The chain mediation effect of basic psychological need and personal growth initiative","authors":"Zhang Jia-Yuan PhD,&nbsp;Zhang Hui PhD ,&nbsp;Chen Yubin MD,&nbsp;Zhang Ling-Hui MD,&nbsp;Zhou Yuqiu MD,&nbsp;Li Yang MD","doi":"10.1016/j.pedn.2025.01.013","DOIUrl":"10.1016/j.pedn.2025.01.013","url":null,"abstract":"<div><h3>Purpose</h3><div>This study aimed to explore the relationship between parental neglect and adolescent social media addiction and its underlying mechanism.</div></div><div><h3>Design and methods</h3><div>A cross-sectional design was used in this study. A total of 792 middle school students participated. Self-report questionnaires were conducted using the Parental Neglect Questionnaire, the Basic Needs Satis faction Scale, the Personal Growth Initiative Scale and the Social Media Addiction Questionnaire. The data were analyzed using the chain mediation model.</div></div><div><h3>Results</h3><div>The results showed that parental neglect was significantly positively correlated with adolescent social media addiction. Basic psychological need and personal growth initiative played a mediating role between parental neglect and adolescent social media addiction, and basic psychological need and personal growth initiative also played a chain mediating role between the two.</div></div><div><h3>Conclusions</h3><div>The study revealed the potential mechanism of parental neglect affecting adolescent social media addiction, providing a theoretical basis for the prevention and intervention of adolescent social media addiction from the family and individual levels.</div></div><div><h3>Practice implications</h3><div>Nurses and educators should engage with parents to increase awareness about the potential consequences of parental neglect and social media addiction among adolescents. These professionals are well-positioned to implement educational programs that teach parents how to satisfy their children's basic psychological needs and encourage personal growth initiatives. Such programs should include continuous support, guidance, and practical strategies for parents to help manage their children's social media use effectively.</div></div>","PeriodicalId":48899,"journal":{"name":"Journal of Pediatric Nursing-Nursing Care of Children & Families","volume":"81 ","pages":"Pages 24-30"},"PeriodicalIF":2.1,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143025248","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":"Social support and family resources influence workload and capacity in parents of children with medical complexity","authors":"Patricia R. Lawrence PhD, RN, CPNP-AC/PC,&nbsp;Melissa Spezia Faulkner PhD, RN, FAAN,&nbsp;Regena Spratling PhD, RN, APRN, CPNP-PC, FAANP, FAAN","doi":"10.1016/j.pedn.2025.01.010","DOIUrl":"10.1016/j.pedn.2025.01.010","url":null,"abstract":"<div><h3>Purpose</h3><div>Research examining factors that impact parents of children with medical complexity (CMC) who also have critical congenital heart disease (CCHD) is limited. We examined relationships among family resources and social support, and how these influence parents' workload and capacity to care for their CMC <strong>with CCHD.</strong></div></div><div><h3>Methods</h3><div>A non-experimental, cross-sectional design was conducted in a national sample of 106 parents of CMC with CCHD. Measures of family resources, social support, workload and capacity to care for these children were analyzed using correlation and multiple regression.</div></div><div><h3>Results</h3><div>The majority of CMC (40.6 %) had between 1 and 3 health conditions requiring an average of 5 daily medications, and 2 medical technologies. Parents reported a mean of 72.25 weekly hours to care for their CMC, and a mean of 8.57 weekly hours to coordinate care. Higher family resources were associated with less workload (<em>r</em> = − 0.47, <em>p</em> &lt; .001) and increased capacity (<em>r</em> = 0.54, <em>p</em> &lt; .001), while more social support was associated with higher capacity (<em>r</em> = 0.44, p &lt; .001). Decreased capacity was associated with increased workload (<em>r</em> = − 0.33, p &lt; .001). Social support and family resources accounted for 24.5 % of the variance in workload and accounted for 30.1 % of the variance in capacity.</div></div><div><h3>Conclusions</h3><div>Fewer resources, less social support, and less perceived capacity were associated with more perceived parental workload to care for their CMC with CCHD.</div></div><div><h3>Practice implications</h3><div>Results emphasize the importance of universal screening for social support and family resources.</div></div>","PeriodicalId":48899,"journal":{"name":"Journal of Pediatric Nursing-Nursing Care of Children & Families","volume":"81 ","pages":"Pages 16-23"},"PeriodicalIF":2.1,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143025340","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":"Assessing the supportive care needs of parents of children with rare diseases in Ireland","authors":"Suja Somanadhan ,&nbsp;Helen McAneney ,&nbsp;Atif Awan ,&nbsp;Sandra McNulty ,&nbsp;Alison Sweeney ,&nbsp;Niamh Buckle ,&nbsp;Shannon Sinnott ,&nbsp;Shirley Bracken ,&nbsp;Amy Jayne McKnight ,&nbsp;Thilo Kroll ,&nbsp;Lemuel J. Pelentsov","doi":"10.1016/j.pedn.2025.01.003","DOIUrl":"10.1016/j.pedn.2025.01.003","url":null,"abstract":"<div><h3>Purpose</h3><div>Rare diseases are individually uncommon yet collectively prevalent. They affect over 300,000 people in Ireland, with 50–70 % impacting children. This study explores the supportive care needs of parents caring for children with rare diseases in Ireland, utilising a validated Parental Needs Scale for Rare Diseases (PNS-RD).</div></div><div><h3>Design and methods</h3><div>This descriptive quantitative study employed survey techniques to assess parental support needs. An online survey was administered to parents across Ireland from August 2021 to December 2021 using the Qualtrics™ platform.</div></div><div><h3>Results</h3><div>Out of 107 consented participants, 89 provided data suitable for analysis. Findings revealed significant challenges, with children averaging six hospital visits per year; 77 % of families indicated special education needs, and 42 % required medically complex care. The PNS-RD scale mean was M = 48.62 (95 % CI: 44.5–52.7), comprising four dimensions (each scored out of 25): i) Understanding the disease (M = 9.01, 95 % CI: 7.5–10.5), ii) Working with health professionals (M = 13.68, 95 % CI: 12.0–15.4), iii) Emotional issues (M = 13.22, 95 % CI: 12.0–14.5), and iv) Financial needs (M = 12.94, 95 % CI: 11.2–14.6). Parents demonstrated confidence in managing their child's care but reported considerable emotional strain and financial challenges.</div></div><div><h3>Conclusion</h3><div>While parents generally felt confident in handling their child's rare disease and were moderately satisfied with the care and support received, the emotional, psychological, and financial toll remained high.</div></div><div><h3>Implications for practice</h3><div>This study underscores the urgent need for comprehensive support systems to alleviate these burdens, advocating for tailored healthcare and social support interventions to meet the diverse needs of these families.</div></div>","PeriodicalId":48899,"journal":{"name":"Journal of Pediatric Nursing-Nursing Care of Children & Families","volume":"81 ","pages":"Pages 31-42"},"PeriodicalIF":2.1,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143014290","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}