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1.
Pediatr Blood Cancer ; : e31308, 2024 Sep 03.
Article in English | MEDLINE | ID: mdl-39228075

ABSTRACT

OBJECTIVE: This study characterized caregivers' beliefs related to early intervention services for children with sickle cell disease (SCD) to gain an indepth understanding of caregivers' experiences and desires for early intervention services. METHODS: Both qualitative and quantitative data were collected from caregivers of children aged 0-4 years with SCD across two sites in the United States. Caregivers completed the Knowledge of Infant Development Inventory, a custom survey about their experiences with early intervention, and a qualitative interview. RESULTS: A total of 127 caregivers were approached, 47 participated in surveys, and 20 completed interviews. Caregivers expressed varying levels of confidence and understanding of developmental milestones across sites. Interviews highlighted three main themes: fear of SCD-related complications, variable buy-in to early intervention, and the importance of provider-caregiver relationships. While some caregivers appreciated early intervention, others questioned its necessity. Caregivers communicated interest in connecting with other families facing similar challenges, emphasizing the need for increased awareness of available resources. CONCLUSIONS: Fear about their child's well-being was expressed by many caregivers, emphasizing the need for a supportive healthcare team that can help families connect with preventive interventions. While about a quarter of children had been referred to rehabilitation services, caregivers were unaware of the elevated risk for developmental delay, which diminished caregiver interest in participating in programs like early intervention. This study underscores the importance of addressing knowledge gaps and overcoming barriers to enhance care for families affected by SCD.

2.
Matern Child Nutr ; : e13728, 2024 Sep 03.
Article in English | MEDLINE | ID: mdl-39228139

ABSTRACT

OBJECTIVES: Infant temperament is assumed to be primarily innate. However, newer research suggests that maternal affection impacts ratings of temperament and environmental factors, including feeding method, can also influence infant temperament. This study investigates child temperament and its relationships with maternal psychiatric symptoms, environmental variables and feeding method longitudinally in a cohort of children followed from 6 to 72 months. Differences in temperament by feeding group are also investigated. We hypothesized that maternal psychiatric symptoms, environmental stressors, and impaired family dynamics would have negative impact on child temperament, whereas breastfeeding would have a positive impact on child temperament. METHOD: Mothers' ratings of child's temperament, own psychiatric symptomatology, environmental stresses and family cohesion were obtained in 504 mother-infant dyads via rating scales completed by mothers. Infants were breastfeed (BF), fed soy-based infant formula (SF) or dairy-based infant formula (MF). Linear mixed effect models investigated the relationship of variables on child's temperament while controlling for significant covariates and repeated measurements. RESULTS: Mothers in this study did not endorse clinical-level psychiatric symptomatology; however, when adjusted for significant covariates, higher psychiatric symptomatology significantly correlated with environmental stressors, impaired family dynamics and elevations in temperament ratings of infants' adaptability and mood. There were no lasting differences for temperament between feeding groups. However, some significant transient increases in rhythmicity and adaptability were found between SF and BF children. CONCLUSION: Positive relationships between family environment stressors and maternal psychiatric ratings were found. Transient differences were found in child temperament based upon feeding method.

3.
Infant Ment Health J ; 2024 Sep 02.
Article in English | MEDLINE | ID: mdl-39223794

ABSTRACT

Responsive caregiving is associated with secure attachment and positive child developmental outcomes. However, there is some debate on whether responsive caregiving is a universal construct. Few studies have researched responsive caregiving in diverse cultural settings, particularly in low- and middle-income countries. In this study, we explore if and how responsive caregiving is conceptualized among mothers of children under 3-years-old in rural, Sindh Pakistan. A phenomenological qualitative study was implemented in Naushahro Feroze through in-depth interviews with twenty mothers. Mothers were asked about their aspirations for their children and how they would respond in a variety of different scenarios. Data were analyzed using thematic content analysis with an inductive-deductive coding scheme. There was substantial variation in mothers' described responsive behaviors and beliefs. Almost all mothers described using some form of responsive parenting. Responding to children's demands while the mother was preoccupied, using verbal responses to console children, and if mothers believed that children should be praised, lacked consensus. Most mothers described using breastfeeding for consolation and highlighted the importance of immediately consoling their crying child. The results suggest that there is a need for a more nuanced approach to understand caregiver behaviors across contexts.


Una sensible prestación de cuidado se asocia con una afectividad segura y con resultados positivos en el desarrollo del niño. Sin embargo, se da un debate sobre si la sensible prestación de cuidado es una estructura universal. Pocos estudios han investigado la sensible prestación de cuidado en diversos escenarios culturales, particularmente en países de bajas y medias entradas económicas. En este estudio, exploramos si la sensible prestación de cuidado está conceptualizada entre las madres de niños menores de 3 años en el área rural de Sindh en Pakistán y cómo lo está. Un estudio fenomenológico cualitativo se implementó usando datos de Naushahro Feroze (ciudad en la provincia de Sindh), por medio de entrevistas profundas con veinte madres. A las madres se les preguntó acerca de sus aspiraciones con respecto a sus niños y cómo ellas responderían en una variedad de diferentes escenarios. Se analizaron los datos usando un análisis de contenido temático con un esquema de codificación inductivo­deductivo. Hubo variación sustancial en las descripciones de las madres acerca de sus conductas y creencias sensibles. Casi todas las madres hicieron las descripciones usando alguna forma de crianza sensible. Faltó el consenso en el caso de responder a las peticiones de los niños mientras la madre estaba preocupada, en el uso de respuestas verbales para consolar a los niños, así como en el caso de si las madres creían que los niños debían ser elogiados. La mayoría de las madres hizo sus descripciones usando el amamantar como manera de consolar y subrayó la importancia de consolar inmediatamente al niño que llora. Los resultados sugieren que hay una necesidad de un acercamiento más matizado para comprender las conductas de prestación de cuidado a través de los contextos.

4.
Article in English | MEDLINE | ID: mdl-39225185

ABSTRACT

BACKGROUND: One in ten U.S. children lives with a grandparent, and more foster children are being placed in kinship care. OBJECTIVES: Our objective was to compare early language and communication development and school readiness among children raised by grandparents (alone or in multigenerational households) to children raised by parents. METHODS: We included in this cross-sectional study children ages 1-5 years from the 2016-2020 National Survey of Children's Health to examine healthy and ready to learn school readiness outcomes and binary language and communication development (2018-2020 data only) by caregiver type (parent, multigenerational, and grandparent-only) with survey-weighted log-binomial regression adjusted for confounders. We stratified by survey years pre-COVID-19 pandemic versus during. RESULTS: Among 33,342 children, 86.0% (SE = 0.51) of children were 'On-Track' for language and communication development; only 37.2% (SE = 0.68) were 'On-Track' overall for school readiness. Children raised by grandparents or in multigenerational households were more often 'On-Track' for school readiness than children raised by parents, but only upon adjustment for covariates (adjusted prevalence ratio (aPR) for grandparent-only 1.13, 95% confidence interval (CI) 1.11, 1.15; aPR for multigenerational 1.13, CI 1.12, 1.15). Smaller and less consistent differences in prevalence were observed for the other outcomes (language and communication development, school readiness domains of early learning skills, social-emotional development, self-regulation development and physical well-being and motor development). A disparity in school readiness may have emerged during the COVID-19 pandemic; children in grandparent-only households had a lower prevalence of being 'On-Track' for school readiness (aPR 0.71, 95% CI 0.69, 0.73) compared to children in parent households, whereas children in multigenerational households continued to be more often school-ready than children in parent households. CONCLUSION: Large proportions of children across caregiver types were not fully prepared for school. Consideration of key covariates is important because socio-economic disadvantage may mask other advantages grandparent-led and multigenerational households offer children's early development.

5.
Article in English | MEDLINE | ID: mdl-39245975

ABSTRACT

Rare diseases, while individually rare, are common when considered collectively, affecting about one in 17 people across their lifetime. However, there is a lack of awareness of and education about rare diseases in nursing. To address this, the Global Nursing Network Rare Diseases (GNNRD) has been launched to connect nurses from within all fields of practice and at all levels of experience, with the aim of improving the lives of people with rare and undiagnosed diseases (RUDs). The GNNRD aims to empower nurses on a global scale through leadership, knowledge exchange and skill development and to provide a platform from which they can influence policy and advocate for patients and their families at regional, national and international levels. This article provides an overview of RUDs and some of the challenges experienced by patients and their families and describes the development and aims of the GNNRD.

6.
Ann N Y Acad Sci ; 2024 Sep 01.
Article in English | MEDLINE | ID: mdl-39217503

ABSTRACT

The Moments that Matter® parenting program aims to promote nurturing care and healthy early childhood development (ECD) through monthly home visits and monthly community group meetings that are delivered by ECD promoters and coordinated with faith leaders in rural Western Kenya. We designed a process evaluation in August 2023 during the first quarter of program implementation. We conducted in-depth interviews and focus group discussions with caregivers, ECD promoters, faith leaders, and program staff to capture their program experiences, assess program quality, and explore the implementation barriers and facilitators during this early stage of program roll-out. Although ECD promoters delivered the program with fidelity, the roles and responsibilities of faith leaders were relatively weaker and inconsistent. Key facilitators of quality implementation included visual aids of key messages and supportive supervision. Barriers included a lack of clarity about faith leaders' roles and relatively long group session duration. We highlight several key recommendations for improving fidelity, quality, and eventual program effects with respect to enhancing nurturing care and early child development. Overall, our study showcases how a process evaluation conducted during the early phase of program implementation can reveal practical insights that can be used to inform program adaptations and quality improvement.

7.
AIDS Behav ; 2024 Sep 09.
Article in English | MEDLINE | ID: mdl-39249627

ABSTRACT

Children who are HIV-exposed and uninfected (CHEU) are at increased risk for poor growth, health, and development compared to children who are HIV-unexposed and uninfected. To support families with CHEU, we assessed the acceptability of engaging family members to support women living with HIV (WLWH) with exclusive breastfeeding (EBF) and antiretroviral therapy (ART) adherence and to engage in responsive infant caregiving. We conducted trials of improved practices, a consultative research approach, that follows participants over time as they try recommended behaviors. We enrolled postpartum women in Lusaka, Zambia, who identified home supporters. At visit 1, WLWH were interviewed about current practices. At visit 2, WLWH and home supporters received tailored EBF, responsive care, and ART adherence counseling. At visit 3, WLWH and home supporters were interviewed about their experiences trying recommended practices for 2-3 weeks. Interview transcripts were analyzed thematically. Participants included 23 WLWH, 15 male partners, and 8 female family members. WLWH reported several barriers to EBF. The most common were fear of HIV transmission via breastfeeding-despite high ART adherence-and insufficient breastmilk. After counseling, WLWH reported less fear of HIV transmission and improved breastfeeding practices. Home supporters reported providing WLWH increased support for EBF and ART adherence and practicing responsive caregiving. Both male and female home supporters appreciated being included in counseling and more involved in caregiving, and WLWH valued the increased support. Families with CHEU need focused support. Tailored counseling and family support for WLWH show promise for improving EBF, responsive caregiving, and ART adherence.

8.
Bol Med Hosp Infant Mex ; 81(4): 217-224, 2024.
Article in English | MEDLINE | ID: mdl-39236669

ABSTRACT

BACKGROUND: Some cancer survivors experience difficulties with concentration, attention, and memory; however, there are no studies on neurodevelopment in patients under 5 years of age who are undergoing cancer treatment. Our aim was to evaluate neurodevelopment in cancer patients under 5 years of age using the Early Development Instrument (EDI) test, considering factors such as nutritional status, type of cancer, and treatment effect. METHODS: A cross-sectional study was conducted from February 2018 to March 2019. Patients with cancer diagnoses outside the central nervous system in any phase of cancer treatment were included. RESULTS: A total of 45 patients were included. Regarding fine motor skills, 28% of patients with retinoblastoma and 23% of patients with leukemia or lymphoma had a risk of developmental delay compared to 0% of patients with solid tumors (p = 0.025). The final results showed that 19 (42.2%) patients had normal neurodevelopment (gray), 7 (15.5%) had a delay in neurodevelopment (light gray), and 19 (42.2%) had a risk of developmental delay (black). Regarding developmental delay, 52% of patients in the leukemia and lymphoma group, 71% in the retinoblastoma group, and 23% in the solid tumor group presented developmental delay (p = 0.06). CONCLUSIONS: The risk of delay and lag in neurodevelopment is common in cancer patients under 5 years of age undergoing treatment. However, more studies are required to evaluate the effect of treatment on this group of patients as it may be affected by various factors.


INTRODUCCIÓN: En algunos pacientes supervivientes de cáncer se presentan dificultades de concentración, atención y memoria, sin embargo no hay estudios en relación al neurodesarrollo en pacientes menores de 5 años que se encuentran en tratamiento oncológico. Por lo que el objetivo fue valorar el neurodesarrollo en pacientes con cáncer durante el tratamiento oncológico mediante la prueba EDI tomando en cuenta diversos factores como su estado nutricional, tipo de cancer, y el efecto del tratamiento. MÉTODOS: Se realizó un estudio transversal, de febrero de 2018 a marzo de 2019. Se incluyeron pacientes mayores de 1 año y menores de 5 años con diagnóstico de cáncer fuera del sistema nervioso central, en tratamiento oncológico. RESULTADOS: Se incluyeron 45 pacientes. En el área motor fina el 28% de los pacientes con retinoblastoma y 23% con leucemias y linfomas se encontraron en rojo (retraso) en comparación con 0% de los pacientes con tumores sólidos (p = 0.025). En el resultado global se encontró que 19 (42.2%) pacientes tuvieron neurodesarrollo normal (gris), 7 (15.5%) rezago en el neurodesarrollo (gris claro) y 19 (42.2%) con riesgo de retraso en el desarrollo (negro). De los pacientes que presentaron riesgo de retraso el 52% fueron del grupo de leucemias y linfomas, el 71% en el grupo de retinoblastoma y el 23% del grupo de tumores sólidos (p = 0.06). CONCLUSIONES: La presencia de riesgo de retraso y rezago en el neurodesarrollo es frecuente en menores de 5 años con diagnóstico de cáncer. Se requieren más estudios, para evaluar el efecto del tratamiento en este grupo de pacientes, ya que pueden influir diversos factores.


Subject(s)
Developmental Disabilities , Neoplasms , Humans , Cross-Sectional Studies , Child, Preschool , Male , Female , Infant , Developmental Disabilities/etiology , Developmental Disabilities/epidemiology , Neurodevelopmental Disorders/epidemiology , Neurodevelopmental Disorders/etiology , Retinoblastoma , Nutritional Status , Child Development/physiology , Cancer Survivors/statistics & numerical data , Risk Factors
9.
Cureus ; 16(8): e66478, 2024 Aug.
Article in English | MEDLINE | ID: mdl-39246890

ABSTRACT

Postpartum depression (PPD) has been widely studied, assessed, and promptly intervened in new mothers. However, paternal postpartum depression gained attention not long ago. Postpartum depression in men could present over one year following the birth of the child, frequently presenting with symptoms like irritability, low mood, sleep disturbances, changes in appetite, fatigue, and loss of interest in everyday activities; amongst other symptoms of Major Depressive Disorder which may hinder them from taking care of themselves and the baby. Paternal PPD significantly impacts partner relationships causing maternal PPD, poor infant bonding, and therefore, affecting overall child development. The following narrative review is based on a literature search of articles published on paternal postnatal depression. The primary emphasis of this review has been to provide an overview of the current comprehension of paternal postpartum depression regarding prevalence, global incidence, and risk factors and to explore potential diagnostic tools for assessment and interventional strategies to treat this condition. Interestingly, pandemic-related stressors have been positively attributed to an increase in PPD prevalence post-pandemic. While more research is being conducted on this subject, research on the measurement characteristics of the diagnostic tools is highly recommended to implement well-defined criteria for early diagnosis of paternal PPD. The significant adverse consequences of PPD for not just the new mother, but also the infants, necessitate proper and timely diagnosis of PPD. Despite its severity, there have been no specific treatment modalities.

10.
BMC Pediatr ; 24(1): 500, 2024 Aug 03.
Article in English | MEDLINE | ID: mdl-39097686

ABSTRACT

BACKGROUND AND OBJECTIVES: Electronic media (e-media) has become a universal part of young children's daily lives. Previous studies have found an association between increased screen time and children's psychosocial symptoms. We investigated whether parents' psychological distress and parenting style dimensions explain the association between children's screen time and psychosocial symptoms. Moreover, we investigated whether parents' mental well-being and parenting style dimensions moderate this association. METHODS: We used data from the Finnish CHILD-SLEEP birth cohort study. Parents and the child were assessed when the child was 5 years old (N = 671). The measure of screen time included program viewing from TV and other devices. Child's psychosocial problems and parents' depression, stress and parenting style dimensions were assessed by self-reports. RESULTS: A high level of screen time in children was associated with attention and concentration difficulties, hyperactivity and impulsivity symptoms as well as internalizing and externalizing symptoms among 5-year-olds. For the most part, the associations remained significant despite controlling for parents' mental health, parenting style dimensions and multiple background factors, especially associations relating to attention and concentration difficulties and hyperactivity symptoms were robust. Maternal stress and depression moderated the association between children's screen time and psychosocial symptoms, indicating a more pronounced association among stressed or depressed mothers. CONCLUSION: There is an independent association between children's screen time and psychosocial symptoms which is especially pronounced among those children whose mothers had poorer mental well-being. In clinical practice, the length of screen time should be inquired already at a young age and parents should be offered guidance to reduce the possible ill effects of excessive screen time, as well as help with their own mental health problems.


Subject(s)
Parenting , Parents , Screen Time , Humans , Child, Preschool , Female , Male , Parenting/psychology , Finland , Parents/psychology , Depression/psychology , Depression/etiology , Stress, Psychological , Parent-Child Relations , Birth Cohort
11.
Child Care Health Dev ; 50(5): e13314, 2024 Sep.
Article in English | MEDLINE | ID: mdl-39108055

ABSTRACT

AIM: We aimed to estimate the prevalence of risk for developmental and behavioural problems for children in their first year of full-time primary education in the Australian Capital Territory (ACT). METHODS: We conducted an analysis of the 2014-2017 Kindergarten Health Check (KHC), an annual series of complete enumeration surveys of all children in their first year of full-time primary education in the ACT. Risk for developmental and behavioural problems was determined using the Parents' Evaluation of Developmental Status (PEDS) questionnaire. RESULTS: 19 414 children (mean age 5.56 years; 51.4% boys; 2.3% Aboriginal and Torres Strait Islander; 18.4% quintile of greatest relative disadvantage) who participated in the 2014-2017 KHC were included in the study (87%). More than half of ACT children in their first year of primary education had low/no developmental risk identified through the PEDS questionnaire, with 1 in 10 at high risk. CONCLUSIONS: Those more likely to have a high risk PEDS score were boys, those from the areas experiencing relative disadvantage, and Aboriginal and Torres Strait Islander children. While we can identify children at risk through screening, the greater challenge remains to identify and address the underlying causes of healthy inequalities, even within highly socioeconomically advantaged communities.


Subject(s)
Child Behavior Disorders , Developmental Disabilities , Child , Child, Preschool , Female , Humans , Male , Australian Capital Territory/epidemiology , Child Behavior Disorders/epidemiology , Developmental Disabilities/epidemiology , Prevalence , Risk Factors , Socioeconomic Factors , Surveys and Questionnaires , Australian Aboriginal and Torres Strait Islander Peoples
12.
Sci Rep ; 14(1): 18360, 2024 08 07.
Article in English | MEDLINE | ID: mdl-39112666

ABSTRACT

Evidence suggests that maternal metabolome may be associated with child health outcomes. We analyzed the association between the maternal metabolome between 28-35 gestational weeks and child growth and development during the first year. A prospective cohort of 98 mother-child dyads was followed at birth, 1, 6, and 12 months. Maternal serum samples were collected for targeted LC-MS/MS analysis, which measured 132 metabolites. The child's growth and development were assessed at each time-point. Z-scores were calculated based on WHO growth standards, and the domains of development were assessed using the Ages and Stages Questionnaires (ASQ-3). Multiple linear mixed-effects models were performed and confounders were identified using a Diagram Acyclic Graph. The Benjamini-Hochberg correction was used for multiple comparison adjustments. We found a positive association between lysophosphatidylcholines (14:0; 16:0; 16:1; 17:0; 18:0; 18:1; 18:2; 20:4) with the z-score of weight-for-age, and lysophosphatidylcholines (14:0; 16:0; 16:1; 18:0) and taurine with the z-score of weight-for-length, and lysophosphatidylcholines (14:0; 16:0; 16:1; 17:0; 18:0; 18:1; 18:2; 20:4) and glycine with the z-score of BMI-for-age. The leucine, methionine, tryptophan, and valine were negatively associated with the fine motor skills domain. We observed an association between maternal metabolome and the growth and child's development throughout the first year.


Subject(s)
Child Development , Metabolome , Pregnancy Trimester, Third , Humans , Female , Pregnancy , Infant , Pregnancy Trimester, Third/blood , Infant, Newborn , Male , Prospective Studies , Adult , Mothers
13.
Front Psychol ; 15: 1384424, 2024.
Article in English | MEDLINE | ID: mdl-39086429

ABSTRACT

Limiting children's screen time has become a new parenting challenge. Due to the high attractiveness of media and digital devices, many children experience painful transitions in screen time to other activities. Screen time tantrums is a new concept that describes children's negative affect screen time limits. Knowing the factors that increase children's negative reactions will be helpful in parents and educators practice to prevent screen time tantrums or enrich children's nondigital activities, making them attractive alternatives to the media. Based on theoretical insights into the coping mechanisms of frustration and anger in preschool children, this study was aimed to explore the effects of executive functions skills, family activities, and children's play behavior with real toys on screen time tantrums. Sample included 654 caregiver-child pairs (M children age = 70.3 months, SD = 4.02). Results confirmed the hypothesis that play behavior with real toys is a stronger preventor of screen time tantrum than EF skills. The findings suggest that supporting play activity in preschool children might help them to avoid strong negative affects due to screen time limitation. The results of this study may be also considered as a support for the theoretical assumptions that play can be considered as a universal way of coping with frustration and anger in childhood.

14.
Prev Sci ; 2024 Aug 08.
Article in English | MEDLINE | ID: mdl-39115651

ABSTRACT

The COVID-19 pandemic and resulting mitigation measures have led to increased vulnerabilities in early child development. However, research is scarce and there are no studies on the persistence of these losses three years into the pandemic among young children. To fill in this gap, we examined census-like evaluations of school readiness carried out among preschoolers in Uruguay. The assessments were carried out among 5 cohorts of 5-year-olds: who were assessed prior to the pandemic (2018, 2019); during the pandemic (2020, 2021); and after the health emergency declaration ended in Uruguay (2022). A total of 180,984 teacher evaluations were included covering cognitive, motor and socio-emotional development, as well as attitudes toward learning. Overall, we found that scores in most spheres of child development decreased from before to during the pandemic in 2020 and 2021. In 2022, scores returned to pre-pandemic levels. Our findings suggest the recovery of developmental losses among cohorts of children in kindergarten took more than two years in a country that experienced a mild-to-moderate impact of the COVID-19 pandemic.

15.
BMC Health Serv Res ; 24(1): 978, 2024 Aug 24.
Article in English | MEDLINE | ID: mdl-39180037

ABSTRACT

BACKGROUND: Children and families from priority populations experienced significant psychosocial and mental health issues to the COVID-19 pandemic. Yet they also faced significant barriers to service access, particularly families from culturally and linguistically diverse (CALD) backgrounds. With most child and family health nurse clinics ceasing in-person consultations due to the pandemic, many children missed out on health and developmental checks. The aim of this study was to investigate the perspectives and experiences of family members and service providers from an urban, CALD community regarding the implementation of a digital, developmental surveillance, Watch Me Grow-Electronic (WMG-E) program. METHODS: Semi-structured interviews were conducted with 17 family members, service navigators, and service providers in a multicultural community in South Western Sydney, Australia. This qualitative study is an implementation evaluation which formed as part of a larger, two-site, randomised controlled trial of the WMG-E program. A reflexive thematic analysis approach, using inductive coding, was adopted to analyse the data. RESULTS: Participants highlighted the comprehensive and personalised support offered by existing child and family health services. The WMG-E was deemed beneficial because the weblink was easy and quick to use and it enabled access to a service navigator who support family access to relevant services. However, the WMG-E was problematic because of technology or language barriers, and it did not facilitate immediate clinician involvement when families completed the weblink. CONCLUSIONS: Families and service providers in this qualitative study found that using WMG-E empowered parents and caregivers to access developmental screening and learn more about their child's development and engage with relevant services. This beds down a new and innovative solution to the current service delivery gap and create mechanisms that can engage families currently not accessing services, and increases knowledge around navigating the health and social care services. Notwithstanding the issues that were raised by families and service providers, which include accessibility challenges for CALD communities, absence of clinical oversight during screening, and narrow scope of engagement with available services being offered, it is worth noting that improvements regarding these implementation factors must be considered and addressed in order to have longevity and sustainability of the program. TRIAL REGISTRATION: The study is part of a large randomised controlled trial (Protocol No. 1.0, Version 3.1) was registered with ANZCTR (registration number: ACTRN12621000766819) on July 21st, 2021 and reporting of the trial results will be according to recommendations in the CONSORT Statement.


Subject(s)
COVID-19 , Cultural Diversity , Qualitative Research , Humans , Female , Male , Child , Family/psychology , Health Services Accessibility , Adult , SARS-CoV-2 , Australia , Child Health Services/organization & administration , Patient Navigation/organization & administration , Interviews as Topic , Middle Aged
16.
Trials ; 25(1): 556, 2024 Aug 23.
Article in English | MEDLINE | ID: mdl-39180108

ABSTRACT

BACKGROUND: Vulnerable children, including those with neuro-developmental delays and disabilities, often face barriers in accessing early primary education, thus hindering progress toward Sustainable Development Goal 4.2. Evidence-based interventions are essential to enhancing inclusivity and establishing sustainable implementation strategies to address this challenge. This study, Every Newborn-Reach up Early Education Intervention for All Children (EN-REACH), builds on the previous Every Newborn- Simplified Measurement Integrating Longitudinal Neurodevelopmental and Growth (EN-SMILING) observational cohort study. This paper provides the protocol for a cluster randomized controlled trial (cRCT) to evaluate the effectiveness of a parenting group intervention program for enhancing school readiness in Bangladesh, Nepal, and Tanzania, and an embedded process evaluation to inform scalability and feasibility. METHODS: EN-REACH is a cRCT with at least 150 clusters to evaluate the impact of a parent training program led by trained parent-teacher facilitator pairs, focusing on children aged 4 ~ 6 years preparing for preschool. Approximately 500 participants from the EN-SMILING cohort at each site have been identified. A geographic information system will define ~ 50 clusters in each of the three countries, each with approximately ten parent-child dyads. Half the clusters will be randomly assigned to intervention and control groups. The primary outcome is "school readiness", assessed using the Measuring Early Learning Quality and Outcomes tool. Secondary outcomes include Intelligence Quotient, child functioning, growth, visual, and hearing assessments. Data will be collected at baseline, and post-intervention data following implementation of the parent group intervention sessions over approximately 5 months. Quantitative data on coverage and quality care, combined with qualitative insights from children, caregivers, facilitators, and stakeholders' perspectives, will be used to conduct a process evaluation applying the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework.  DISCUSSION: This protocol details a trial focused on enhancing school readiness and cognitive abilities in young children, inclusive of those with disabilities, aiming to bridge gap from home to early primary education. EN-REACH aims to provide insights into the effectiveness and acceptability of a co-designed disability-inclusive school readiness program in three countries, potentially impacting national and global policies for all children, including those with disabilities. TRIAL REGISTRATION: The trial was retrospectively registered on clinicaltrials.gov on 29 February 2024 (NCT06334627).


Subject(s)
Child Development , Early Intervention, Educational , Parents , Randomized Controlled Trials as Topic , Humans , Tanzania , Child, Preschool , Nepal , Early Intervention, Educational/methods , Bangladesh , Parents/education , Parents/psychology , Child , Female , Male , Multicenter Studies as Topic , Time Factors , Parenting , Child Behavior , Infant, Newborn , Age Factors , Teacher Training/methods
17.
Disabil Rehabil ; : 1-11, 2024 Aug 26.
Article in English | MEDLINE | ID: mdl-39185771

ABSTRACT

PURPOSE: A powerful aphorism states: "If I hadn't believed it, I wouldn't have seen it!" This challenging notion reminds us how strongly we are influenced by prevailing ideas, and how we interpret things according to current fashions and teachings. MATERIALS AND METHODS: In this paper we present and discuss contemporary perspectives concerning childhood-onset disability and the evolving nature of how people are thinking and acting. We illustrate these ideas by reminding readers of how we have all traditionally been trained and acculturated to think about many dimensions of neurodevelopmental disability ("What?"); reflect on the impact of these ways of thinking in terms of what we have conventionally "seen" and done ("So What?"); and contrast those traditions with contemporary concepts that we believe or know impact the field ("Now What?"). RESULTS: Many of the concepts discussed here will be familiar to readers. In taking this analytically critical perspective we aim to illustrate that by weaving these individual threads together we are able to create a coherent fabric that can serve children with childhood-onset NDD, their families, service providers, the community, and policy-makers. We do not purport to offer a comprehensive view of the whole field. CONCLUSIONS: We encourage readers to consider the integration of these new ways of thinking and acting in our still-evolving field of "childhood-onset disability".


21st-century thinking about childhood-onset neurodisability builds on WHO's ICF framework for health, expanding well beyond traditional primary biomedical foci on diagnosis and management and toward a focus on functioning and belonging.New emphases put family at the centre, attending to family voices and prioritizing family wellbeing as targets for intervention equal to a focus on the child.There is strong emerging evidence to support the value and impact of these broader approaches on overall family functioning and wellbeing.These developments are primarily conceptual rather than technical: they emphasize child and family development, parenting, promotion of functioning, and a life-course approach from the start of intervention.

18.
Philos Trans R Soc Lond B Biol Sci ; 379(1911): 20230154, 2024 Oct 07.
Article in English | MEDLINE | ID: mdl-39155719

ABSTRACT

A fundamental component of human cognition is the ability to intuitively reason about behaviours of objects and systems in the physical world without resorting to explicit scientific knowledge. This skill was traditionally considered a symbolic process. However, in the last decades, there has been a shift towards ideas of embodiment, suggesting that accessing physical knowledge and predicting physical outcomes is grounded in bodily interactions with the environment. Infants and children, who learn mainly through their embodied experiences, serve as a model to probe the link between reasoning and physical concepts. Here, we tested school-aged children (5- to 15-year-olds) in online reasoning games that involve different physical action concepts such as supporting, launching and clearing. We assessed changes in children's performance and strategies over development and their relationships with the different action concepts. Children reasoned more accurately in problems that involved supporting actions compared to launching or clearing actions. Moreover, when children failed, they were more strategic in subsequent attempts when problems involved support rather than launching or clearing. Children improved with age, but improvements differed across action concepts. Our findings suggest that accessing physical knowledge and predicting physical events are affected by action concepts, and those effects change over development. This article is part of the theme issue 'Minds in movement: embodied cognition in the age of artificial intelligence'.


Subject(s)
Child Development , Cognition , Humans , Child , Adolescent , Male , Female , Child, Preschool , Child Development/physiology , Concept Formation , Thinking/physiology , Problem Solving
19.
Article in English | MEDLINE | ID: mdl-39122562

ABSTRACT

OBJECTIVE: To investigate in extremely low birthweight (ELBW; <1000 g) babies the associations between refeeding syndrome (serum phosphate <1.4 mmol·L-1 and serum total calcium>2.8 mmol·L-1) and hypophosphataemia in the first week and death or neurodisability at 2 years' corrected age (CA). DESIGN: Secondary cohort analysis of the ProVIDe trial participants with serum biochemistry within 7 days of birth. At 2 years' CA, neurodisability was assessed by Bayley Scales of Infant Development Edition III and neurological examination. Associations between neurodisability and other variables were analysed using t-tests and logistic regression adjusted for sex and smallness-for-gestational age. SETTING: Six tertiary neonatal intensive care units (NICUs) in New Zealand. PARTICIPANTS: 352 ELBW babies born between 29 April 2014 and 30 October 2018. MAIN OUTCOME MEASURE: Death or neurodisability at 2 years' CA. RESULTS: Fifty-nine babies died, two after discharge from the NICU. Of the 336 babies who survived to 2 years' CA, 277 had neurodevelopmental assessment and 107 (39%) had a neurodisability. Death or neurodisability was more likely in babies who had refeeding syndrome (aOR 1.96 (95% CI 1.09 to 3.53), p=0.02) and in babies who had hypophosphataemia (aOR 1.74 (95% CI 1.09 to 2.79), p=0.02). Hypophosphataemia was associated with increased risk of death (aOR 2.07 (95% CI 1.09 to 3.95), p=0.03)) and severe hypophosphataemia (<0.9 mmol·L-1) with increased risk of death (aOR 2.67 (95% CI 1.41 to 5.00), p=0.002) and neurodisability (aOR 2.31 (95% CI 1.22 to 4.35), p=0.01). CONCLUSIONS: In ELBW babies, refeeding syndrome and hypophosphataemia in the first week are associated with death or neurodisability. Until optimal phosphate requirements are determined through further research, monitoring for hypophosphataemia and mitigation strategies are indicated. TRIAL REGISTRATION NUMBER: ACTRN12612001084875.

20.
Am J Intellect Dev Disabil ; 129(5): 387-404, 2024 Sep 01.
Article in English | MEDLINE | ID: mdl-39197852

ABSTRACT

Motivation is a key factor for child development, but very few studies have examined child and family predictors of both child task and perceived motivation. Thus, the three aims of this 6-month longitudinal study in preschoolers with global developmental delays (GDD) were to explore: 1) differences between task and perceived motivation in cognitive domain; 2) differences among three domains of perceived motivation: cognitive, gross motor, and social; and 3) early child and family predictors of cognitive task motivation and the three domains of perceived motivation 6 months later. Results indicated that preschoolers with GDD showed higher cognitive task motivation than cognitive perceived motivation, and lower perceived cognitive motivation than the other two perceived motivation domains. Different child and family factors predicted cognitive task motivation and the three domains of perceived motivation. Practitioners should educate caregivers on how to observe children's motivation to enhance children's active participation.


Subject(s)
Developmental Disabilities , Motivation , Humans , Motivation/physiology , Developmental Disabilities/psychology , Child, Preschool , Male , Female , Longitudinal Studies , Child Development/physiology , Cognition/physiology , Family/psychology , Motor Skills/physiology , Infant
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