Africa Knowledge Hub for Children

Peer-reviewed articleEurope PMC21 Jun 2026

Parents Value Shared Decision-Making and Sensitive Communication During End-of-Life Care in Neonatal Intensive Care: An Exploratory Study.

Aim To explore parents' needs during end-of-life decision-making and to understand their experiences in a neonatal intensive care unit (NICU) following the death of their child. Methods This observational, retrospective study was conducted in the NICU of a tertiary-level hospital. Data were collected using a structured questionnaire administered to parents following the death of their neonate. Three main domains were explored: information and communication, the decision-making process and comfort-focused care. Results During the study period, 51 neonates died after treatment was redirected towards comfort-focused care. Of the 102 eligible parents, 52 participated. Information and communication were highly rated (mean 6.5/7), particularly the sensitive delivery of information. Parents generally felt supported during decision-making (mean 5.6/7), and most (76.9%) preferred professional guidance. However, only half perceived concordance between their preferences and the final decision. Comfort-focused care was also positively evaluated (mean 6.13/7), although opportunities to choose the place of death were limited. The questionnaire demonstrated acceptable internal consistency (α = 0.72). Conclusion Parents value shared decision-making that respects their values while providing professional guidance. These findings highlight the importance of sensitive communication, adequate time for reflection, ongoing support throughout the decision-making process, and meaningful opportunities to say goodbye.

Palomo AM, de Veciana AR, Aresté ME et al.

Survival

Peer-reviewed articleEurope PMC13 Jul 2026

Protocol for a digital health-assisted cluster randomised controlled trial to prevent obesity in preschool children in Jinan, China.

Introduction Early childhood obesity has become a major public health concern globally. The preschool period (ages 4-6 years) represents a critical window for obesity prevention due to its long-term implications on growth trajectories and behaviour formation. However, existing evidence for effective interventions targeting this age group remains limited and inconsistent, particularly in low- and middle-income countries. Methods and analysis The Peking University-Smart Monitoring and Responsive Technology for Early Childhood Health is a cluster-randomised controlled trial designed to evaluate the effectiveness and sustainability of a multi-component, digital health-assisted obesity prevention intervention. The trial involves approximately 980 children aged 4-6 years (middle and senior kindergarten classes) from 14 kindergartens, randomly allocated to either the intervention (n=7) or control (n=7) groups. The intervention spans 9 months, followed by a 12-month post-intervention follow-up. Interventions are delivered across kindergartens, families and healthcare systems. A digital Smart Health Platform is integrated into the intervention to provide health education, real-time feedback and interactive support, enabling personalised health management and promoting parental engagement. Data are collected at baseline, 4, 9 and 21 months. The primary outcome is the between-group difference in changes in body mass index Z-score at 9 months. Secondary outcomes include other anthropometric indicators, dietary intake, physical activity levels and other measurements. In addition, a process evaluation will be conducted to assess fidelity and participant engagement, and a health economic evaluation will estimate cost-effectiveness and cost-benefit outcomes. Ethics and dissemination Ethical approval for this study was obtained from the Ethics Committee of the Shandong Maternal and Child Health Hospital (no. 2025-042). Findings from the trial will be disseminated through peer-reviewed publications and conference presentations to inform future childhood obesity prevention policies and practices. Trial registration number NCT07117149.

Zhang L, Yan S, Yin C et al.

DevelopmentSurvivalExperimentalCNRead at source

Peer-reviewed articleEurope PMC13 Aug 2026

Factors influencing shared decision-making in microtia reconstruction: A systematic review.

Background The decision to pursue microtia reconstruction is highly personalized, requiring shared decision-making (SDM). This systematic review analyzes patient and caregiver motivations and priorities guiding the SDM process to help inform clinician-led discussions. Methods A systematic review evaluated studies from 1/1/1990 to 4/25/2025. Included articles focused on SDM in pediatric microtia reconstruction. Descriptive analyses were performed. Results Five articles met criteria, including 235 study participants: 69 patients (ages 3 to 17 at time of surgery), 134 caregivers, and 32 healthcare providers. Key themes were aggregated into a convergence table and given a score (out of 10) representing the strength of convergence of the theme across studies. Various conflicting factors influenced timing of surgery. Fear of social stigma (convergence score: 8/10) and negative psychosocial impacts (8/10) motivated early intervention. Prioritizing patient involvement in decision-making led to delaying surgery. Child involvement in decision-making ranged from unilateral parental decision-making to waiting until patients could make the decision for themselves. Patient motivations for surgery were driven by the negative impacts of microtia (6/10). However, some children highlighted positive aspects and argued that concern for bullying should not influence the decision to pursue surgery (5/10). Microtia patients desired involvement in the SDM process and believed patient preferences should drive decision-making (5/10). However, patients acknowledged the impact of parental influence and had difficulty recalling pre-operative information they had received as a child (4/10). Both patients and caregivers lacked clarity on when children could make informed decisions and how to involve them. Conclusions Though caregivers significantly influence the SDM process regarding ear reconstruction, microtia patients desire to be heavily involved in treatment decisions. Further research regarding age at which children can assent and SDM tools could benefit this patient population.

Zhu AQ, Yu SE, Luu K et al.

DevelopmentParticipationRead at source

Peer-reviewed articleEurope PMC19 Jun 2026

Outcomes from the ASPEN intervention program: a randomized clinical trial of a culturally adapted parent-mediated intervention program in low-resource settings.

This randomized controlled study examined the efficacy of a culturally adapted parent-mediated intervention for parents and young children with autism (n = 45) from low-resource households (ClinicalTrials.gov Identifier: NCT04505488). Families from these settings are often left out of autism intervention studies and arguably have unique needs not considered in autism intervention work. Parent/child dyads were randomized to the intervention group, which received 12 weekly sessions that included psychoeducation and coaching of evidence-based (EB) strategies with their children, or the comparison group who received all materials and 4 triweekly check-in sessions. We found that parents in the intervention group showed improvement in their self-efficacy (confidence) in using EB strategies, compared to the comparison group, and both groups improved in the use of EB strategies. Parents in the comparison group also improved in feeling more empowered and their children improved in social communication skills. These findings suggest that less intense parent interventions may be just as efficacious as those that require more regular participation for families from low-resource households. More research is needed to find the right balance and active ingredients to benefit these families. Clinical trial registration https://clinicaltrials.gov/study/NCT04505488, identifier NCT04505488.

Vanegas SB, Magaña S

DevelopmentProtectionExperimentalRead at source

Peer-reviewed articleEurope PMC1 Jun 2026

Parent Perceptions of School Meals as Predictors of Participation Among Pacific Islander Families in the United States.

Background Pacific Islander families in the United States experience high rates of food insecurity and diet-related chronic disease. School meal programs can improve nutrition and reduce family burdens, yet little is known about Pacific Islander parents' perceptions of these programs. Methods A cross-sectional survey was conducted with 150 Pacific Islander parents of K-12 public school students across the United States Parents reported their child's participation in the school breakfast program (SBP) and national school lunch program (NSLP), perceptions of school meals, and demographic characteristics. Logistic regression was used to identify predictors of daily/almost daily participation. Results Nearly half of children did not regularly participate in SBP, and 31% did not regularly participate in NSLP. Participation was higher among those eligible for free or reduced-price meals. Perceived family benefits significantly increased the odds of both breakfast and lunch participation, while negative perceptions reduced participation in breakfast. Implications for school health policy, practice, and equity Findings suggest culturally appropriate outreach emphasizing family benefits and improving meal quality and variety may increase participation among Pacific Islander families. Conclusions Parent perceptions strongly shape school meal participation. Enhancing awareness, access, and cultural relevance may reduce disparities and improve health equity.

Spruance LA, Santamaria D, Hall S

SurvivalDevelopmentPractitionerUSRead at source

Peer-reviewed articleEurope PMC8 Jul 2026

Health Equity Morning Report: A Novel Case-Based Resident Curriculum to Address the Social Drivers in Hospitalized Children.

Objective To evaluate whether participation in the Health Equity Morning Report (HEMR), a novel case-based curriculum, was associated with increased pediatric residents' observable mentions or plans related to social/structural determinants of health (SSDOH) during inpatient rounds. Methods In academic year 2024-2025, the authors developed a direct-observational checklist informed by national health-related social needs screening tools and generated validity evidence through expert review and calibration. Pediatric interns were observed twice before and twice after curriculum exposure. Each encounter received an ordinal score (0 = no SSDOH content, 1 = SSDOH mention, 2 = SSDOH plan). Mann-Whitney U tests compared ordinal scores; Fisher's exact tests compared proportions. A brief post-session survey assessed perceived educational value. Results We analyzed 132 patient encounters, including 52 pre-curriculum encounters and 80 post-curriculum encounters. No SSDOH-related mention or plan occurred during the pre-curriculum period, whereas nine of 80 post-curriculum encounters (11.3%) included engagement (six plans, three mentions). Differences were statistically significant (U = 1846.0, P = .01; Fisher's exact test P = .01). Among survey respondents (n = 65), 41 (79%) rated the session Very or Extremely educational. Conclusions Participation in HEMR was associated with increased SSDOH-related engagement during rounds and was rated highly by learners.

Hairston TK, Khan J, Byrd C et al.

DevelopmentProtectionPractitionerUSRead at source

Peer-reviewed articleEurope PMC28 Jul 2026

Enhancing Pediatric Obesity Management through Quality Improvement: A Hybrid Approach to Intensive Health Behavior and Lifestyle Treatment in Primary Care.

Introduction Intensive health behavior and lifestyle treatment (IHBLT) programs can improve weight and reduce comorbidities for children with obesity, but implementation in primary care remains limited. Baseline performance at our institution showed low referral volume, limited participation, and insufficient treatment intensity, indicating gaps in program reach and adoption. Methods Utilizing the model for improvement, we led a quality improvement initiative in a large urban academic primary care clinic to increase IHBLT referrals, participation, and treatment intensity. Sequential plan-do-study-act cycles tested provider education, standardized and culturally tailored materials, a hybrid in-person-and-virtual program structure, and engagement strategies. We tracked three process measures: referrals, participation, and program intensity. We tracked outcomes using individuals-moving-range (X-mR) statistical process control charts. Results Statistical process control analysis demonstrated that program participation and intervention intensity met Provost criteria for a sustained shift, whereas referral volume demonstrated primarily common-cause variation. Improvements in participation and intervention intensity were maintained over time, with centerlines recalculated to reflect updated process performance. Moving range charts indicated stable variation across all measures. Conclusions An iterative, context-responsive system redesign improved the delivery of evidence-based pediatric obesity treatment in our primary care setting. The hybrid IHBLT model, combining in-person visits and technology-supported touchpoints, was associated with sustained gains in participation and treatment intensity, whereas referral volume remained stable. This pragmatic approach leverages existing resources and offers a feasible pathway for primary care clinics seeking to implement guideline-concordant IHBLT while addressing common logistical and equity-related barriers.

Skrocki ET, Sarabia C, Xiong S et al.

SurvivalDevelopmentPractitionerUSRead at source

Peer-reviewed articleEurope PMC1 Aug 2026

Growth and Maturation Assessment in Youth Sport: Balancing Benefits and Risks.

The assessment and monitoring of growth and maturation (G&M) in youth sport has become increasingly debated, with some medical advisory boards expressing concerns that weighing young athletes may contribute to body image disturbances and eating disorders. In some instances, these concerns have prompted recommendations against anthropometric assessment in youth sport. This narrative review examines the evidence for and against G&M assessment in youth sport, evaluating the benefits of appropriately implemented assessment against the potential risks. G&M assessment supports injury prevention by identifying athletes undergoing rapid growth who are at increased risk of growth-related and overuse injuries. It enables individualized training by aligning programing with biological rather than chronological age, and promotes inclusive talent identification by counteracting maturity-related selection biases that systematically exclude late-maturing athletes. While concerns about body image and eating disorders are valid, the reviewed evidence suggests that the risks are not associated with the collection of anthropometric measurements itself, but rather with how information is communicated and the broader sociocultural and coaching environments in which athletes train. Five G&M implementation principles are proposed to maximize benefits and minimize risks: stakeholder education, privacy protection, voluntary participation, assessment by trained professionals, and integration within a holistic and child-centered athlete monitoring system. Based on the evidence reviewed, G&M assessment conducted within appropriate ethical and professional frameworks can support athlete welfare, development, and equitable participation.

Lundberg TR, Parry GN, Cumming SP

Read at source

Peer-reviewed articleEurope PMC7 May 2026

Ethical reflections when research includes refugee children - a study of ethics review applications.

Background The global number of refugee children was 43 million in 2025, highlighting the urgent need for research that supports their well-being. Such research must carefully balance children's rights to be protected from harm and to be heard. Objective This study explores how researchers in Sweden address ethical considerations when planning studies involving refugee children, particularly in the context of abuse and neglect, as presented in applications to the Swedish Ethical Review Authority (ERA). Data The data consists of fifteen ethics review applications submitted to ERA between 2019 and 2021 and concerning research about abuse and neglect involving refugee children. Methods The data was analyzed with reflexive thematic analysis using manual coding with the Computer-Assisted Qualitative Data Analysis Software NVivo to identify how researchers present ethical challenges and justify their studies. Findings Three main themes were identified: A particularly vulnerable group, Being both a child and a refugee, and Psychological aspects of refugee children participating in research. Researchers emphasize both the risks and potential benefits of participation and give an extensive view of their ethical reasoning when planning research with refugee children. Conclusions The emphasis on protection over participation in the applications highlights the importance of dialogue between researchers, ethical committees, and children's rights advocates to ensure that research both protects and empowers the children it seeks to understand.

Hagström M, Wegerstad L, Priebe G

ProtectionParticipationSERead at source

Peer-reviewed articleEurope PMC1 Sept 2026

Children with unilateral spastic cerebral palsy have smaller and weaker tibias in the spastic limb compared to the non-spastic limb.

Cerebral palsy (CP) is associated with poor bone architecture. It is unclear if abnormal bone architecture is localized to the area affected by spasticity and whether these deficiencies are dependent on physical activity. This study aimed to examine differences in tibial bone architecture between the spastic and non-spastic limbs in children with unilateral spastic CP and the association between physical activity habits with spastic limb bone architecture. Twenty-four ambulatory children with CP (13 females, 11 males; 7.8 ± 1.7 years) completed bilateral high-resolution peripheral quantitative computed tomography (HR-pQCT) at the distal tibia metaphysis. The frequency of participation (FPS), bone specific physical activity questionnaire (BPAQ), and dynamic participation survey (DPS) were used to assess physical activity habits. Differences between limb architecture were assessed with paired t-tests. Linear regressions were performed on FPS/BPAQ/DPS scores with each HR-pQCT outcome separately. HR-pQCT data without significant motion artifacts were available for eighteen participants. The spastic limb had less total area (p = 0.013, 95%CI 4.87-35.13mm2), trabecular area (p = 0.035, 95%CI 1.22-29.96mm2), cortical area (p = 0.008, 95%CI 1.35-7.63mm2), cortical perimeter (p = 0.012, 95%CI 0.52-3.60 mm), cortical thickness (p = 0.046, 95%CI 0.001-0.112 mm), stiffness (p = 0.012, 95%CI 2065-13,429 N/mm), and failure load (p = 0.008, 95%CI 128-747 N) than the non-spastic limb. Only BPAQ was associated with limb length (p = 0.011, R = -0.584). The distal tibia metaphysis of the spastic limb had similar bone density but was smaller and weaker compared to the non-spastic limb. Differences in bone geometry likely accounted for between-limb differences in estimated bone strength.

Stockhausen JL, Carballido-Gamio J, Carpenter D et al.