Search Results (153)

Background/Objectives: Children with severe physical and communication disabilities face many challenges. They have very limited opportunities for upright, hands-free, self-initiated mobility. Current findings in neuroscience and theories on child development suggest that self-initiated mobility can have positive cascading effects on various developmental areas, including language and communication. This study was conducted to examine the current use of hands-free support walkers with children who have severe physical and communication disabilities and use augmentative and alternative communication and to identify the benefits and problems perceived by their parents and professionals from different disciplines. Methods: Online surveys were utilized to collect information from 127 participants, including 31 parents and 96 professionals or paraprofessionals. Results: The participants reported that these children could perform various motor activities in the hands-free support walkers to achieve different goals. Benefits identified by both parents and professionals included providing a way to exercise and stay active, improving motor control, enhancing independence, and bringing enjoyment. Professionals also observed positive impacts on communication, vocalization, use of eye contact, and problem solving. Conclusions: Results suggest that children with severe physical and communication disabilities can benefit from the upright, hands-free, self-initiated mobility provided by hands-free support walkers. Clinical implications and needs for future research are discussed. Full article

Background: Neonatal jaundice is common and can cause severe hyperbilirubinemia if untreated. The early identification of at-risk newborns is challenging despite the existing guidelines. Objective: This study aimed to identify the key maternal and neonatal risk factors for jaundice requiring phototherapy using machine learning. Methods: In this study hospital, phototherapy was administered following the American Academy of Pediatrics (AAP) guidelines when a neonate’s transcutaneous bilirubin level was in the high-risk zone. To identify the risk factors for phototherapy, we retrospectively analyzed the electronic medical records of 8242 neonates admitted between 2017 and 2022. Predictive models were trained using maternal and neonatal data. XGBoost showed the best performance (AUROC = 0.911). SHAP values interpreted the model. Results: Mode of delivery, neonatal feeding indicators (including daily formula intake and breastfeeding frequency), maternal BMI, and maternal white blood cell count were strong predictors. Cesarean delivery and lower birth weight were linked to treatment need. Conclusions: Machine learning models using perinatal data accurately predict the risk of neonatal jaundice requiring phototherapy, potentially aiding early clinical decisions and improving outcomes. Full article

Introduction: Hospitalization of children creates significant emotional and psychological stress for parents, highlighting the importance of addressing their needs in pediatric care settings. Aims: This study examines the perceptions of both parents and pediatric nurses regarding the needs of hospitalized children. Method: A cross-sectional survey using the validated Needs of Parents of Hospitalized Children (NPQ) was administered to 218 parents and 218 pediatric nurses in four hospitals in Jeddah, Saudi Arabia. Key domains assessed included trust, information, and support. Group differences were evaluated using non-parametric statistical analyses. Results: Trust was prioritized more by parents (83.9%) than nurses (72.4%) (p < 0.05). Both groups deemed information important, but parents (87.2%) rated it as more necessary than nurses (74.1%) (p = 0.02). Parents (79.8%) expressed a greater need for support compared to nurses (67.3%) (p = 0.03). Conclusions: This study identified perceptual differences between parents and nurses regarding trust, communication, and support. Some differences were statistically significant at the p < 0.01 level, while others were suggestive (p-value between 0.01 and 0.05) and require further investigation. These disparities suggest a need to foster mutual understanding and improve communication practices to better align healthcare delivery with family expectations and strengthen family-centered care. Full article

Background: Indigenous peoples in Canada endure lasting effects of colonialism including racism, marginalization, and social, political, and geographic inequities resulting in disproportionate rates of disease and inequitable healthcare. Indigenous infants and children in Canada experience a high incidence of birth complications and illnesses, and families are often left to navigate the care of their child with limited resources. Accordingly, improved, culturally responsive and safe healthcare is needed to enhance child outcomes and optimize family well-being. Purpose and Methods: A qualitative study was conducted by our research team including family members of Indigenous children with serious illnesses, a Cultural Advisor, researchers, and pediatric clinicians. In one component of the study, we explored pediatric healthcare providers’ (HCPs) experiences of caring for Indigenous families of children with serious illness. A purposive sample of 19 pediatric healthcare providers took part in semi-structured qualitative interviews or one focus group. The data were analyzed thematically to identify common experiences and priorities for improved supportive healthcare. Findings: Five themes were identified representing insights from pediatric HCPs, with a focus on barriers to effective healthcare at the interpersonal, institutional, and system levels for seriously ill Indigenous children and their families. Ideas for enhancing the social and cultural responsiveness and safety of supportive healthcare were identified. Implications and Conclusions: The findings offer valuable insights and strategies for HCPs to support holistic, comprehensive, and culturally safe and responsive healthcare. Full article

Background: Respiratory support required by preterm infants involves contact between their immature skin and ventilation devices, which can lead to skin breakdown. Methods: A prospective observational study including newborns with a nasal injury related to respiratory support, born at gestational age < 33 weeks, from May 2020 to January 2022, in the neonatal intensive care unit of Strasbourg. Injuries were recorded using a validated scale at inclusion and 3, 7 and 28 days. Sequelae were evaluated at discharge and 4, 9 and 12 months post-menstrual age. Results: In total, 64/276 newborns (23%) had a nasal injury. Most of the injuries were stage 2 (34/64, 53%) and stage 1 (25/64, 39%). The interface most frequently associated with injury was continuous positive airway pressure (53/64, 83%). Favorable evolution was associated with the injury site (p < 0.01) and the type of respiratory support needed when collecting at the 28th day (p = 0.04). At discharge, 34/58 infants (59%) had sequelae. The presence of a scar was associated with the maximum injury severity (p < 0.001) and total duration of respiratory support (p = 0.02). At 12 months, 31/47 infants (66%) had esthetic sequelae. Conclusions: Nasal injuries related to respiratory support in preterm infants were frequent, and more than half of the injuries resulted in medium-term sequelae. Full article

Background/Objectives: Adaptation to extrauterine life is challenging for preterm newborns. Environmental stimuli, such as noise, can lead to adverse health outcomes, causing instability of vital parameters and impairment of neurodevelopment. The American Academy of Pediatrics recommends a maximum environmental noise level of 45 decibels (dB) or less in the NICU. The study’s primary aim was to describe environmental noise in a neonatal intensive care unit and to analyze potential associations between noise and vital parameters of preterm newborns, including heart rate, respiratory rate, and oxygen saturation levels. Methods: A pilot observational feasibility study was conducted in a level III NICU. Sound levels and vital parameters were recorded over four hours for each preterm newborn. Confounding variables were controlled. Data were analyzed using descriptive statistics, Kendall’s τ-b, and logistic regression analysis. Ethical approval and parental consent were obtained. Results: The average environmental noise level was consistently above 45 dB. Six patients were enrolled, and 22 recordings (ranging in length from 1 to 4 h) were performed. Data adjusted for confounding variables show a statistically significant Kendall’s correlation between heart rate and decibels (τ-b = 0.89, p = 0.003, n = 520), suggesting a monotonous crescent tendency between these two variables, although the relationship is not strong. The logistic regression model indicates that the odds ratio (OR) for decibels related to tachycardia is 1.066, meaning that for each 1 dB increase, the probability of tachycardia rises by 6.6% (p < 0.001). Conversely, the OR for respiratory rate is 0.959, suggesting that for each unit increase in respiratory rate, the probability of tachycardia decreases by approximately 4.1% (p < 0.001). Conclusions: The study reveals that the mean environmental noise level in the NICU consistently exceeds the recommended safety level. Decibels are one of the significant variables contributing to the likelihood of tachycardia, and an increase in decibels has a significant effect on this, but it is not the only one. Further analysis of a larger sample is needed. Full article

Background: The medical care of critically ill children requires special expertise in pediatric emergency and intensive care medicine. In Germany, this expertise is mainly available in specialized centers at maximum-care hospitals due to the small number of cases of critically ill children. Telemedical care networks, such as the Pediatric-Tele-Intensive-Care Network Saxony, offer a solution for networking these centers with regional hospitals providing basic or standard care. However, the evaluation of these networks represents a major challenge, especially because it involves a heterogeneous target group of patients with various diseases. This article reports on the evaluation design development process for such a network, under equal participation of all relevant stakeholders, and presents the resulting evaluation design. Methods: The methods used were a literature review, two workshops, and a survey of all relevant stakeholders (representatives of 17 partner clinics, 4 external experts in pediatric intensive care, and 2 patient representatives). Results: The evaluation design contained proposals for a care objective, outcomes, and the corresponding databases (project database, clinic database, and survey database) to investigate these. Conclusions: Our study can offer other researchers and stakeholders a methodological approach and template for their evaluation design. It is the first published, consented evaluation design for a telemedical care network in pediatric intensive care. When developing and realizing an evaluation design for (tele)medical interventions, including the perspectives of relevant stakeholders, from the outset, it is essential to achieve a high level of commitment to the implementation of the evaluation. Full article

Background: Considering the challenges of Early Childhood Intervention (ECI), especially in rural areas with limited access to resources, it is essential to explore innovative strategies to address these barriers. Recent research highlights the use of mHealth to improve the accessibility and effectiveness of interventions. This study aims to evaluate the impact of mHealth interventions within the family-centered model on child development and familial quality of life, compared to the child-centered model. Methods: This study employs a quasi-experimental design with pre- and post-test measures across two control groups (control group 1: child-centered model and control group 2: family-centered model) and one experimental group (family-centered model with mHealth). The sample consisted of 55 children (11 girls and 44 boys) aged 0 to 6 years old with neurodevelopmental disorders that resided in rural areas from June to September 2023. For the assessment of the family unit, an ad hoc sociodemographic questionnaire, the Family Quality of Life Scale, the Family Confidence Scale, and the Family Outcomes Scale were used. Children were evaluated using the Pediatric Evaluation of Disability Inventory and the Battelle Developmental Inventory Screening Test. Results: Results revealed significant differences between the experimental group (EG) and the control groups. The EG, which received mHealth-based interventions within the family-centered model, demonstrated the greatest improvements in variables related to family quality of life and the child’s social functioning. Conclusions: mHealth appears to be a promising solution for improving access to early childhood intervention in rural areas, enhancing childhood development and a family’s quality of life. Strong therapeutic relationships, supported by interdisciplinary and individualized approaches, are key to maximizing its impact. Full article

Background. T1DM is a significant chronic condition that necessitates regular medical monitoring, dietary and physical activity supervision, and daily blood glucose monitoring and insulin therapy. The management of this disease and the transition to adolescence often have a significant psychosocial impact on the individual and their family. Objective. The objective of this correlational study was to examine the reciprocal influence between adolescents and their caregivers, with a particular focus on the beneficial effect of receiving psychological support sessions from family members and adolescents with T1DM in a pilot study. Methods. An indicator variable was developed to facilitate an analysis of changes occurring prior to, as well as following, the administration of the treatment in question. Family caregivers received two therapy sessions, and we analyzed their perceived caregiver stress. Adolescents had five sessions, and the reduction in emotional distress was studied in them. Results. The sample comprised 15 adolescent–family caregiver dyads. All parents were mothers of adolescents, with a mean age of 47.67 and 13.47 years, respectively. Descriptive statistics and Spearman correlations were conducted. Following the completion of the psychological counseling sessions, the data revealed a significant positive correlation between the perceived reduction in global stress experienced by the caregiver and the adolescent’s emotional distress, with correlation coefficients of 0.74 and 0.61, respectively. Furthermore, a positive relationship was observed between the reduction in existing difficulties in family role adjustment and the reduction in emotional distress among diabetic youth, with correlation coefficients of 0.72 and 0.57. The frequency of emotional distress of the caregiver also correlated with adolescent emotional distress, with a coefficient of 0.60. Conclusions. The findings of this study provide evidence for the circularity of family systems change. A positive emotional contagion effect is observed in the improvements in stress and emotional distress experienced during adolescence and in the family’s adjustment to T1DM, as reported by caregivers and their children who received psychological support sessions. Full article

Background/Objectives: The field of paediatric bioethics addresses ethical issues in paediatric care, where parental authority often guides medical decisions, but children’s preferences should also be considered. Promoting ethical awareness among minors can help them understand complex issues. This study aimed to analyse how sociodemographic, educational, and experiential factors shape adult perspectives on paediatric bioethical issues, particularly concerning pain and death. Methods: A questionnaire was developed to collect adult views of bioethical issues. The online questionnaire was disseminated via e-mail or WhatsApp. It started with an initial group of known individuals and then expanded hierarchically to include contacts of friends. Participants completed an online questionnaire, and data were analysed using SPSS version 22.0 for Windows. Clustering analysis identified two distinct groups. Results: This research focused on Italian adults (N = 889) aged 18 and over. Cluster 1, predominantly female (78.3%) and more highly educated (38.6% with postgraduate degrees), exhibited greater experience with paediatric bioethical issues (81.1%). This group favoured a collaborative approach, supporting shared training among adults (92.3%) and advocating for gradually addressing bioethical issues during childhood (84.3%). Cluster 2, with a higher proportion of males (31.5%) and parents (75.1%), showed lower educational levels (3.0% with middle school education) and less experience with bioethical concerns (93.5%). This group preferred a reactive, situation-specific approach to these issues. Conclusions: This study showed two distinct adult profiles regarding how they approach paediatric bioethics. The first group adopts a preventive and collaborative strategy, while the second group is more reactive and situation-driven. These findings can guide the development of tailored educational programmes to improve discussions about sensitive topics such as pain, incurability, and death in paediatric care. Full article

Background/Objectives: The increasing medical and nursing care complexity in hospitalized children represents a significant challenge for healthcare systems. However, the link between these two dimensions remains partially explored. This study aims to decipher the relationship between Diagnosis-Related Group (DRG) weight and nursing care complexity in hospitalized children and to identify the determinants of medical complexity. Methods: This retrospective study, conducted in an Italian university hospital, included children aged 2 to 11 years admitted to the hospital in 2022 with a minimum hospital stay of 2 days. Data were gathered from the Neonatal Pediatric Professional Assessment Instrument and the Hospital Discharge Register. DRG weight was used as an indicator of medical complexity, while the number of nursing diagnoses (NDs) documented in the first 24 h from hospital admission and the nursing actions (NAs) recorded during the patient’s hospital stay were used to measure nursing care complexity. Correlation analyses were conducted to explore the associations between DRG weight, NDs, and NAs. Stepwise regression was run to identify the key determinants of medical complexity across sociodemographic, clinical, organizational, and nursing variables. Results: Among 914 patients (mean age of 6.11 ± 2.90 years), the median DRG weight was 0.6982 (IQR: 0.5522). Patients had an average of 3.89 ± 2.83 NDs and a median of 17 NAs (IQR: 8). Significant correlations were found between NDs and NAs (r_s = 0.507; p < 0.001), as well as between DRG weight and the frequency of NDs (r_s = 0.232; p < 0.001) and NAs (r_s = 0.184; p < 0.001). Stepwise regression indicated that the number of NAs, surgical DRG, scheduled admissions, and ND frequency were significant determinants of DRG weight (R² = 0.311; adjusted R² = 0.308; p < 0.001). Conclusions: In children, DRG weight is also influenced by nursing care complexity, alongside clinical and organizational factors. An integrated approach is essential to enhance pediatric care and patient outcomes. Full article

Background: Wish-granting interventions are recognized as positive experiences for children with critical illness and their families. While the positive effects have been shown in the immediate and short term, data on their long-term effects are lacking. Objectives: To evaluate the effects of wish-granting interventions on children and parents during and post intervention—both in the weeks after, and up to 5 years after—and to examine any differences between these two groups. Methods: A large-scale international survey was distributed to children (aged 13–17 years old in 2023) and their parents across 24 countries who received a wish-granting intervention in the preceding five years by Make-A-Wish Foundation International. Primary outcomes were positive emotions experienced by children and parents during and after the intervention (short term and long term). The secondary outcomes assessed were negative emotions in wish children, and to what extent children and parents felt the intervention created a sense of normalcy, benefitted other family members, created a happy memory, and gave relief from medical treatment, plus the perceived importance of wish-granting interventions. Results: The responses of 535 children and 1062 parents were analyzed. Both groups reported increases in positive emotions during the early intervention stages, peaking when the wish was granted and persisting in the short and long term. No significant differences were found between children and parents during wish-granting or after the intervention. Negative emotions were reported by a minority of children. Over 80% of children and parents felt the intervention created a happy memory and provided relief from their medical treatments. Nearly all children (96.8%) and parents (95.4%) viewed a wish-granting intervention as important for children with a critical illness. Conclusions: Wish-granting interventions can provide positive emotional benefits to both children and their families in both the short and long term. Full article

(1) Background: Children with medical complexity (CMC) and neurologic impairment (NI) are a growing population in pediatric intensive care units (PICUs). (2) Objective: Our aim was to explore and describe the experiences and beliefs of PICU providers caring for CMC with NI. (3) Methods: A qualitative interview-based study was conducted. Participants were 20 providers (12 attendings and 8 nurse practitioners) who met inclusion criteria of being a faculty, fellow, or advanced practice provider who worked in a PICU; residents were excluded. Participants were recruited via purposive and snowball sampling until information power was reached, and came from seven PICUs across six states, with 10 participants from the authors’ home institution and 10 from external PICUs. Data were collected via recorded videoconference interviews, which were transcribed. Analysis was conducted and relevant themes were identified using the analytic technique of thematic analysis. Rigor was assured by using two coders. (4) Results: Four main themes were identified: (i) providers view CMC with NI as a distinct population of growing importance; (ii) CMC with NI have care needs that challenge traditional perceptions of PICU practice; (iii) PICU providers expressed ambivalence towards caring for CMC with NI; and (iv) some PICU providers have developed adaptive strategies. (5) Conclusions: This population challenges the typical notion of what pediatric critical care represents. Providers display ambivalence about caring for these patients but can develop strategies to make this work meaningful. Understanding PICU clinicians’ views about CMC with NI can provide insights for improved patient care and reduced provider burnout as the field adapts to this population. Full article

Background: Biography writing services are increasingly being used with adult palliative care patients, helping them document their stories in a way that provides meaning for themselves, family, and friends. However, the feasibility of applying a biography program to a pediatric palliative care context is less well known. Methods: A narrative review of the literature was conducted, drawing on existing adult biography programs, while noting differences between the pediatric and adult contexts. The Story Project is outlined in this manuscript as an example of a pediatric biography writing approach, with pilot survey data from six volunteer biographers presented. Thematic analysis was conducted on qualitative data elicited from volunteer biographers regarding challenges experienced and the perceived benefits of the program. Descriptive information is provided for other aspects of their experience of the Story Project. Results: The challenges identified by the volunteer biographers were grouped into seven themes, namely, (1) delays encountered, (2) rapport/interactions with family, (3) family distress, (4) logistics, (5) transcribing-specific issues, (6) identifying themes, and (7) finalizing the biography. The perceived benefits of the Story Project, as perceived by the volunteer biographers, were grouped into four main themes: (1) beneficial processes for families, (2) benefits for the volunteers, (3) intrinsic value of the final product, and (4) beneficial uses of the product. Biographies took between 3–20 months to complete, with most taking 12 months or less. Conclusions: Biography writing is a potentially valuable approach for use with pediatric palliative care patients and their families, with the Story Project being one example of such an intervention, with promising early feasibility data. Full article

Background: Children are a relatively marginalized group when doing research in the context of illness, young children particularly so. This even though children can and should contribute their point of view in providing evidence-based care. This article contributes the experiences of Nurse Researchers in gathering research data in Sweden on the lived experiences of children undergoing needle-related medical procedures, living with home mechanical ventilation or undergoing treatment for cancer. Methods: Nine published articles from four unique Swedish PhD dissertations in Caring Science formed the basis for the present paper where various open and critical qualitative approaches for gathering data were used. Results: Accessing and interpreting the lived experiences of ill children in healthcare research presents methodological, ethical, and cultural challenges. As with health care contexts in other countries, capturing the ill child’s experiences in Sweden requires several different methods. Health researchers in Sweden must navigate a complex landscape of communication barriers, emotional and psychological challenges, and structural issues within the healthcare system to effectively access and understand the lived experiences of children. Conclusions: This paper adds to the knowledge base of research with a focus on gathering the experiences of children with illness within a Swedish health care context. These insights underscore the importance for all researchers of using child-friendly, inclusive methods to understand children’s lived experiences thus ensuring their voices are heard and respected in health research. Children’s and families’ inability to speak the native language of a country cannot be a hinder for inclusion, but rather be encouraged. Full article