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AIM: To determine the frequency, type, clinical, and sociodemographic associations of unmet social needs in children with cerebral palsy (CP). METHOD: We conducted a cross-sectional study of parents and carers of children with CP attending a specialist hospital clinic between July and September 2022. Unmet social needs were self-identified using a survey, guided by the WE CARE survey instrument and adapted to the local context. Sociodemographic and clinical data were obtained from medical records. We performed descriptive analysis of participants' unmet social needs, sociodemographic factors, and clinical factors, and examined for associations using a χ2 test and logistic regression. RESULTS: A total of 105 parents and carers completed the survey. Of these, 68 (64.8%) reported one or more unmet social need, with 24 (22.9%) reporting three or more unmet needs. A higher number (three or more) of unmet needs was associated with Gross Motor Function Classification System levels IV and V (odds ratio [OR] = 3.77, 95% confidence interval [CI] = 1.44-9.86) and intellectual disability (OR = 4.63, 95% CI = 1.61-13.31), but were not significant when corrected for neighbourhood socioeconomic disadvantage. The greatest socioeconomic disadvantage was associated with housing concerns (p = 0.002), food (p = 0.026), and financial insecurity (p = 0.02). INTERPRETATION: Unmet social needs are experienced by most families of children with CP. This study highlights the importance of systematic pathways to identify and address unmet social needs.
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INTRODUCTION: Advanced therapies offer unprecedented opportunities for treating rare neurological disorders (RNDs) in children. However, health literacy, perceptions and understanding of novel therapies need elucidation across the RND community. This study explored healthcare professionals' and carers' perspectives of advanced therapies in childhood-onset RNDs. METHODS: In this mixed-methodology cross-sectional study, 20 healthcare professionals (clinicians, genetic counsellors and scientists) and 20 carers completed qualitative semistructured interviews and custom-designed surveys. Carers undertook validated psychosocial questionnaires. Thematic and quantitative data analysis followed. RESULTS: Participants described high positive interest in advanced therapies, but low knowledge of, and access to, reliable information. The substantial 'therapeutic gap' and 'therapeutic odyssey' common to RNDs were recognised in five key themes: (i) unmet need and urgency for access; (ii) seeking information; (iii) access, equity and sustainability; (iv) a multidisciplinary and integrated approach to care and support and (v) difficult decision-making. Participants were motivated to intensify RND clinical trial activity and access to advanced therapies; however, concerns around informed consent, first-in-human trials and clinical trial procedures were evident. There was high-risk tolerance despite substantial uncertainties and knowledge gaps. RNDs with high mortality, increased functional burdens and no alternative therapies were consistently prioritised for the development of advanced therapies. However, little consensus existed on prioritisation to treatment access. CONCLUSIONS: This study highlights the need to increase clinician and health system readiness for the clinical translation of advanced therapeutics for RNDs. Co-development and use of educational and psychosocial resources to support clinical decision-making, set therapeutic expectations and promotion of equitable, effective and safe delivery of advanced therapies are essential. PATIENT OR PUBLIC CONTRIBUTION: Participant insights into the psychosocial burden and information need to enhance the delivery of care in this formative study are informing ongoing partnerships with families, including co-production and dissemination of psychoeducational resources featuring their voices hosted on the Sydney Children's Hospitals Network website SCHN Brain-Aid Resources.
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Enfermedades del Sistema Nervioso , Enfermedades Raras , Humanos , Enfermedades Raras/terapia , Estudios Transversales , Enfermedades del Sistema Nervioso/terapia , Femenino , Masculino , Australia , Adulto , Cuidadores/psicología , Encuestas y Cuestionarios , Entrevistas como Asunto , Participación de los Interesados , Persona de Mediana Edad , Personal de Salud/psicología , Investigación Biomédica Traslacional , Investigación CualitativaRESUMEN
OBJECTIVE: The objective was to describe mental health service and psychotropic medicine use among a cohort of Aboriginal young people and quantify their relation to sociodemographic, family and health factors. METHODS: In a prospective cohort study with data linkage, 892 Aboriginal children aged 0-17 years living in urban and regional areas of New South Wales, Australia, were included. We assessed mental health-related service use, paediatric service use and psychotropic medicine dispensing claims covered by the Australian Government Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme from July 2012 to June 2017. RESULTS: Most children (71%) did not have a record of mental health service or psychotropic medication use. 18.7% had ⩾1 mental health-related service claim; 26.7% had ⩾1 paediatric service claim; and 20.3% had ⩾1 psychotropic medicine dispensing claim. General practitioner services were the most accessed mental health-related service (17.4%) and 12.7% had been dispensed attention-deficit hyperactivity disorder medicines. Child characteristics associated with treatment included emotional and behavioural problems (prevalence ratio: 1.97, 95% confidence interval = [1.46, 2.64] for mental health services; prevalence ratio: 2.87, 95% confidence interval = [2.07, 3.96] for medicines) and risky behaviour (prevalence ratio: 1.56, 95% confidence interval = [1.12, 2.16] for mental health services; prevalence ratio: 2.28, 95% confidence interval = [1.54, 3.37] for medicines). Parent-related factors included chronic illness (prevalence ratio: 1.42, 95% confidence interval = [1.03, 1.95] for mental health services; prevalence ratio: 2.00, 95% confidence interval = [1.49, 2.69] for medicines) and functional limitations (prevalence ratio: 1.61, 95% confidence interval = [1.16, 2.24] for mental health services; prevalence ratio: 1.86, 95% confidence interval = [1.34, 2.59] for medicines). CONCLUSIONS: Most Aboriginal children and young people did not have claims for mental health services or medicines. Aboriginal children with emotional and behavioural problems, or parents with health problems were more likely to have mental health service or medicine claims.
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Precision medicine refers to treatments that are targeted to an individual's unique characteristics. Precision medicine for neurodevelopmental disorders (such as cerebral palsy, attention-deficit/hyperactivity disorder, obsessive-compulsive disorder, Tourette syndrome, and autism spectrum disorder) in children has predominantly focused on advances in genomic sequencing technologies to increase our ability to identify single gene mutations, diagnose a multitude of rare neurodevelopmental disorders, and gain insights into pathogenesis. Although targeting specific gene variants with high penetrance will help some children with rare disease, this approach will not help most children with neurodevelopmental disorders. A 'pathway' driven approach targeting the cumulative influence of psychosocial, epigenetic, or cellular factors is likely to be more effective. To optimize the therapeutic potential of precision medicine, we present a biopsychosocial integrated framework to examine the 'gene-environment neuroscience interaction'. Such an approach would be supported through harnessing the power of big data, transdiagnostic assessment, impact and implementation evaluation, and a bench-to-bedside scientific discovery agenda with ongoing clinician and patient engagement. WHAT THIS PAPER ADDS: Precision medicine has predominantly focused on genetic risk factors. The impact of environmental risk factors, particularly inflammatory, metabolic, and psychosocial risks, is understudied. A holistic biopsychosocial model of neurodevelopmental disorder causal pathways is presented. The model will provide precision medicine across the full spectrum of neurodevelopmental disorders.
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Trastorno por Déficit de Atención con Hiperactividad , Trastorno del Espectro Autista , Trastornos del Neurodesarrollo , Trastorno por Déficit de Atención con Hiperactividad/diagnóstico , Trastorno del Espectro Autista/genética , Trastorno del Espectro Autista/terapia , Niño , Genómica , Humanos , Trastornos del Neurodesarrollo/genética , Trastornos del Neurodesarrollo/terapia , Medicina de PrecisiónRESUMEN
In 2020, Australia's successful COVID-19 public health restrictions comprised a national "initial lockdown" (March-May) and "ongoing lockdown" (July-November) for metropolitan Victorian residents only. We evaluated associations between ongoing lockdown and family finances and mental health. In the June and September 2020 Royal Children's Hospital National Child Health Polls, caregivers of children in Victoria and New South Wales (NSW) reported the following: job/income loss; material deprivation (inability to pay for essential items); income poverty; mental health (Kessler-6); perceived impact on caregiver/child mental health; and caregiver/child coping. Data from caregivers (N = 1207/902) in June/September were analysed using difference-in-difference modelling (NSW provided the comparator). During Victoria's ongoing lockdown, job/income loss increased by 11% (95%CI: 3%-18%); Kessler-6 poor mental health by 6% (95%CI: -0.3%-12%) and perceived negative mental health impacts by 14% for caregivers (95%CI: 6%-23%) and 12% for children (95%CI: 4%-20%). Female (vs. male) caregivers, metropolitan (vs. regional/rural) families, and families with elementary school-aged children (vs. pre-/high-school) were the most affected. The ongoing lockdown was associated with negative experiences of mental health, employment and income, but not deprivation or poverty, likely because of government income supplements introduced early in the pandemic. Future lockdowns require planned responses to outbreaks and evidence-informed financial and mental health supports.
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AIM: There is limited information on the health status of urban Australian Aboriginal children and young people attending community-based child health services. Such information is vital to plan appropriate services. The objective of the study is to describe the health status and service use of children and young people presenting to an urban Aboriginal Community Paediatric Service in Sydney, Australia. METHODS: Cross-sectional analysis of routinely collected data extracted from electronic medical records and the Australian Immunisation Register for urban Aboriginal children and young people aged 0-18 years who visited the service between January 2013 and December 2017. RESULTS: A total of 273 Aboriginal children and young people had 609 occasions of service. Almost all (97.35%) were fully immunised. Forty-six percent of occasions of service noted >3 diagnoses; 55% of the consultations were for mental health and behavioural disorders. The most frequent diagnoses were speech and language delay, attention deficit hyperactivity disorder and school difficulty. Psychosocial concerns were noted in 61.2% of occasions of service, and 19.4% of children had a history of prematurity. Eighty-five percent of consultations had an onward referral to additional services. The most common referrals were for audiology, ear-nose and throat specialists and speech therapy. There were low numbers of referrals to mental health services relative to the high number of mental health diagnoses. CONCLUSION: It is essential that we address the mental, developmental and psychosocial needs of Aboriginal children and young people who attend urban Community Child Health services. Integrated service models should be developed in partnership with Aboriginal community to do this.
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Servicios de Salud del Niño , Nativos de Hawái y Otras Islas del Pacífico , Adolescente , Australia , Niño , Estudios Transversales , Estado de Salud , Humanos , Aceptación de la Atención de SaludRESUMEN
BACKGROUND: Most Australian Aboriginal children are on track with their development, however, the prevalence of children at risk of or with a developmental or behavioural problem is higher than in other children. Aboriginal child development data mostly comes from remote communities, whereas most Aboriginal children live in urban settings. We quantified the proportion of participating children at moderate and high developmental risk as identified by caregivers' concerns, and determined the factors associated with developmental risk among urban Aboriginal communities. METHODS: Study methods were co-designed and implemented with four participating urban Aboriginal Community Controlled Health Services in New South Wales, Australia, between 2008 and 2012. Caregiver-reported data on children < 8 years old enrolled in a longitudinal cohort study (Study of Environment on Aboriginal Resilience and Child Health: SEARCH) were collected by interview. The Parents' Evaluation of Developmental Status (PEDS) was used to assess developmental risk through report of caregiver concerns. Odds ratios (OR) were calculated using multinomial logistic regression to investigate risk factors and develop a risk prediction model. RESULTS: Of 725 children in SEARCH with PEDS data (69% of eligible), 405 (56%) were male, and 336 (46%) were aged between 4.5 and 8 years. Using PEDS, 32% were at high, 28% moderate, and 40% low/no developmental risk. Compared with low/no risk, factors associated with high developmental risk in a mutually-adjusted model, with additional adjustment for study site, were male sex (OR 2.42, 95% confidence intervals 1.62-3.61), being older (4.5 to < 8 years versus < 3 years old, 3.80, 2.21-6.54), prior history of ear infection (1.95, 1.21-3.15), having lived in 4 or more houses versus one house (4.13, 2.04-8.35), foster care versus living with a parent (5.45, 2.32-12.78), and having a caregiver with psychological distress (2.40, 1.37-4.20). CONCLUSION: In SEARCH, 40% of urban Aboriginal children younger than 8 years were at no or low developmental risk. Several factors associated with higher developmental risk were modifiable. Aboriginal community-driven programs to improve detection of developmental problems and facilitate early intervention are needed.
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Salud Infantil , Nativos de Hawái y Otras Islas del Pacífico , Australia/epidemiología , Niño , Preescolar , Femenino , Humanos , Estudios Longitudinales , Masculino , Nueva Gales del SurRESUMEN
AIM: To determine population-based prevalence, hospital use and costs for children admitted to hospital with chronic conditions. METHODS: We used hospital admissions data for children aged <16 years, 2002-2013 in New South Wales, Australia. RESULTS: Of all admissions, 35% (n = 692 514) included a diagnosis of a chronic condition. In 2013, prevalence was 25.1 per 1000 children. Children with greater socio-economic disadvantage or living in regional and remote areas had lower prevalence, but a higher proportion of emergency admissions. Prevalence rates were highest for respiratory and neurological conditions (9.4, 7.4 per 1000, respectively). Mental health conditions were most common in older children. Admissions involving chronic conditions had longer length of stay (3.0 vs. 1.6 days), consumed more bed-days (50% of total) and involved 43% of total hospital costs. CONCLUSION: Differences in prevalence and use of hospital services suggest inequities in access and need for more appropriate and equitable models of care.
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Costos de Hospital , Hospitalización , Adolescente , Australia , Niño , Hospitales , Humanos , Tiempo de Internación , Nueva Gales del Sur/epidemiología , PrevalenciaRESUMEN
AIM: To investigate the impact of socio-economic disadvantage on indicators of cerebral palsy (CP) severity - motor impairment, intellectual disability, and the presence of severe comorbidities - in children with CP in Australia. METHOD: Data from the Australian Cerebral Palsy Register were analysed. Socio-economic disadvantage was assessed using maternal age, maternal country of birth, and a measure of neighbourhood socio-economic status (SES) at the time of the child's birth. Descriptive bivariate analysis, trend analysis, risk ratios, and mediation analysis were undertaken to examine the impact of disadvantage on the indicators of CP severity. RESULTS: A socio-economic gradient was demonstrated with an increasing proportion of children with non-ambulant status, at least moderate intellectual disability, and the presence of severe comorbidities (having epilepsy, functional blindness, bilateral deafness, and/or no verbal communication) with decreasing neighbourhood SES, adolescent motherhood, and maternal minority ethnicity. INTERPRETATION: In Australia, socio-economic disadvantage at birth impacts adversely on CP severity at age 5 years. By identifying that socio-economically disadvantaged children with CP are at greater risk of more severe functional outcomes, we can inform targeted interventions at the family and neighbourhood level to reduce these inequities for children with CP. WHAT THIS PAPER ADDS: Socio-economic disadvantage is associated with increased severity of cerebral palsy functional outcomes. This encompasses low neighbourhood socio-economic status, adolescent motherhood, and maternal minority ethnicity.
IMPACTO DE LA DESVENTAJA SOCIAL SOBRE LA SEVERIDAD DE LA PARÁLISIS CEREBRAL: OBJETIVO: Investigar el impacto de la desventaja socioeconómica en los indicadores de severidad de la parálisis cerebral (PC), definida como - deterioro motor, discapacidad intelectual y la presencia de severidad de las comorbilidades: en niños con PC en Australia. MÉTODO: Se analizaron los datos del Australian Cerebral Palsy Register. La desventaja socioeconómica se evaluó utilizando la edad materna, el país de nacimiento de la madre, y una medida de estado socioeconómico del vecindario (SES) en el momento del nacimiento del niño. Se realizaron análisis bivariados, análisis de tendencias, índices de riesgo y análisis de mediación para examinar el impacto de la desventaja en los indicadores de severidad PC. RESULTADOS: Se demostró un gradiente socioeconómico con una proporción creciente de niños con estado no ambulante, al menos discapacidad intelectual moderada, y la presencia de comorbilidades graves (con epilepsia, ceguera funcional, sordera bilateral y / o sin comunicación verbal) con SES vecinales, maternidad adolescente, y etnia de la minoría materna. INTERPRETACIÓN: En Australia, la desventaja socioeconómica al nacer tiene un impacto adverso en la severidad de PC a la edad de 5 años. Al identificar a los niños con desventajas socioeconómicas con PC tienen un mayor riesgo de resultados funcionales más severos. Con esta información podemos guiar intervenciones a nivel familiar y de vecindario para reducir estas inequidades en los niños con PC.
IMPACTO DA DESVANTAGEM SOCIAL NA SEVERIDADE DA PARALISIA CEREBRAL: OBJETIVO: Investigar o impacto da desvantagem sócio-econômica nos indicadores de severidade da paralisia (PC) - comprometimento motor, deficiência intelectual, e a presença de comorbidades graves - em crianças com PC na Austrália. MÉTODO: Dados do Registro Austrliano de Paralisia Cerebral foram analisados. Desvantagens sócio-econômicas foram avaliadas usando-se a idade materna, o país de Nascimento da mãe, e uma medida do estado sócio-econômico (ESE) da vizinhança no momento do nascimento da criança. Análise bivariada descritiva, análise de tendências, taxas de risco, e análise de mediação foram realizados para examinar o impacto da desvantagem nos indicadores da severidade da PC. RESULTADOS: Um gradiente sócio-econômico foi demonstrado com um aumento da proporção de crianças com situação não ambilante, deficiência intelectual pelo menos moderada, e presença de comorbidades severas (epilepsia, cegueira funcional, surdez bilateral, e/ou nenhuma comunicação verbal) quanto menor o ESE da vizinhança, a minoria étnica materna e maternidade na adolescência. INTERPRETAÇÃO: Na Austrália, a desvantagem sócio-econômica ao nascimento impacta adversamente a severidade da PC na idade de 5 anos. Ao identificar que crianças com PC em desvantagem sócio-econômica têm maior risco de resultados funcionais mais severos, podemos informar intervenções específicas voltadas para a família e para a vizinhança para reduzir o nível destas inequidades para crianças com PC.
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Parálisis Cerebral , Trastornos de la Comunicación/epidemiología , Sordera/epidemiología , Epilepsia/epidemiología , Factores Socioeconómicos , Poblaciones Vulnerables , Adolescente , Australia/epidemiología , Peso al Nacer , Ceguera/epidemiología , Parálisis Cerebral/epidemiología , Parálisis Cerebral/psicología , Niño , Preescolar , Femenino , Edad Gestacional , Humanos , Masculino , Edad Materna , Estudios Retrospectivos , Adulto JovenRESUMEN
BACKGROUND: Encouraging early child development and the early identification of developmental difficulties is a priority. The Ministry of Health in the Australian State of New South Wales (NSW), has recommended a program of developmental surveillance using validated screening questionnaires, namely, the Parents' Evaluation of Development Status (PEDS) and Ages and Stages Questionnaire (ASQs), however, the use of these tools has remained sub-optimal. A longitudinal prospective birth cohort "Watch Me grow" study was carried out in the South Western Sydney (SW) region of NSW to ascertain the uptake as well as the strategies and the resources required to maximise engagement in the surveillance program. This paper reports on a qualitative component of the study examining the attitudes, enablers and barriers to the current developmental surveillance practices, with reference to screening tools, amongst health professionals. METHODS: Qualitative data from 37 primary health care providers in a region of relative disadvantage in Sydney was analysed. RESULTS: The major themes that emerged from the data were the "difficulties/problems" and "positives/benefits" of surveillance in general, and "specificity" of the tools which were employed. Barriers of time, tool awareness, knowledge and access of referral pathways, and services were important for the physician providers, while the choice of screening tools and access to these tools in other languages were raised as important issues by Child and Family Health Nurses (CFHN). The use of these tools by health professionals was also influenced by what the professionals perceived as the parents' understanding of their child's development. While the PEDS and ASQs was utilised by CFHNs, both General Practitioners (GPs) and paediatricians commented that they lacked awareness of developmental screening tools and highlighted further training needs. CONCLUSIONS: The results highlight the practical challenges to, and limited knowledge and uptake of, the use of recommended screening tools as part of developmental surveillance. There is a need for further research regarding the most effective integrated models of care which will allow for a better collaboration between parents and service providers and improve information sharing between different professionals such as CFHNs GPs, Practices nurses and Paediatricians involved in screening and surveillance programs.
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Actitud del Personal de Salud , Discapacidades del Desarrollo/diagnóstico , Tamizaje Masivo , Desarrollo Infantil , Preescolar , Femenino , Encuestas de Atención de la Salud , Humanos , Lactante , Masculino , Nueva Gales del Sur , Padres , Encuestas y CuestionariosRESUMEN
OBJECTIVE: The current study aimed to examine the impact of sociodemographic and health-service factors on breast-feeding in sub-Saharan African (SSA) countries with high diarrhoea mortality. DESIGN: The study used the most recent and pooled Demographic and Health Survey data sets collected in nine SSA countries with high diarrhoea mortality. Multivariate logistic regression models that adjusted for cluster and sampling weights were used to investigate the association between sociodemographic and health-service factors and breast-feeding in SSA countries. SETTING: Sub-Saharan Africa with high diarrhoea mortality. SUBJECTS: Children (n 50 975) under 24 months old (Burkina Faso (2010, N 5710); Demographic Republic of Congo (2013, N 6797); Ethiopia (2013, N 4193); Kenya (2014, N 7024); Mali (2013, N 3802); Niger (2013, N 4930); Nigeria (2013, N 11 712); Tanzania (2015, N 3894); and Uganda (2010, N 2913)). RESULTS: Overall prevalence of exclusive breast-feeding (EBF) and early initiation of breast-feeding (EIBF) was 35 and 44 %, respectively. Uganda, Ethiopia and Tanzania had higher EBF prevalence compared with Nigeria and Niger. Prevalence of EIBF was highest in Mali and lowest in Kenya. Higher educational attainment and frequent health-service visits of mothers (i.e. antenatal care, postnatal care and delivery at a health facility) were associated with EBF and EIBF. CONCLUSIONS: Breast-feeding practices in SSA countries with high diarrhoea mortality varied across geographical regions. To improve breast-feeding behaviours among mothers in SSA countries with high diarrhoea mortality, breast-feeding initiatives and policies should be context-specific, measurable and culturally appropriate, and should focus on all women, particularly mothers from low socio-economic groups with limited health-service access.
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Lactancia Materna/estadística & datos numéricos , Diarrea/mortalidad , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Encuestas Epidemiológicas/estadística & datos numéricos , Adolescente , Adulto , África del Sur del Sahara/epidemiología , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Persona de Mediana Edad , Prevalencia , Factores Socioeconómicos , Adulto JovenRESUMEN
AIM: To examine socio-demographic factors associated with maternal help-seeking for child developmental concerns in a longitudinal birth cohort study. An understanding of these factors is critical to improving uptake of services to maximise early identification and intervention for developmental concerns. METHODS: A birth cohort was recruited from the post-natal wards of two teaching hospitals and through community nurses in South Western Sydney, Australia, between November 2011 and April 2013. Of the 4047 mothers approached, 2025 consented to participate (response rate = 50%). Socio-demographic and service use information was collected after the child's birth and when the child was 18 months of age. Sources of help were divided into three categories (formal health services, other formal services and informal supports) and compound variables were created by summing the number of different sources identified by mothers. RESULTS: Significantly more sources of help were intended to be used and/or actually accessed by mothers born in Australia, whose primary language was English, with higher levels of education and annual household income, and among mothers of first-born children. CONCLUSIONS: Developmental concerns are known to increase with increased psychosocial adversity. Our findings of reduced intent to access and use of services by socio-economically disadvantaged families and those from culturally and linguistically diverse backgrounds suggests that an inverse care effect is in operation whereby those children with the greatest health needs may have the least access to services. Possible explanations for this, and recommendations for improving service accessibility for these populations through targeted and culturally appropriate services, are discussed.
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Desarrollo Infantil , Demografía , Conducta de Búsqueda de Ayuda , Madres/psicología , Australia , Niño , Servicios de Salud del Niño , Diagnóstico Precoz , Femenino , Hospitales de Enseñanza , Humanos , Estudios Longitudinales , Masculino , Encuestas y CuestionariosRESUMEN
BACKGROUND: Regular health visits for parents with young children provide an opportunity for developmental surveillance and anticipatory guidance regarding common childhood problems and help to achieve optimal developmental progress prior to school entry. However, there are few published reports from Australian culturally and linguistically diverse (CALD) communities exploring parents' experiences for accessing child health surveillance programs. This paper aims to describe and explain parental experiences for accessing developmental surveillance and anticipatory guidance for children. METHODS: Qualitative data was obtained from 6 focus groups (33 parents) and seven in-depth interviews of CALD parents recruited from an area of relative disadvantage in Sydney. Thematic analysis of data was conducted using an ecological framework. RESULTS: An overarching theme of "awareness-beliefs-choices" was found to explain parents' experiences of accessing primary health care services for children. "Awareness" situated within the meso-and macro-systems explained parents knowledge of where and what primary health services were available to access for their children. Opportunities for families to obtain this information existed at the time of birth in Australian hospitals, but for newly arrived immigrants with young children, community linkages with family and friends, and general practitioner (GPs) were most important. "Beliefs" situated within the microsystems included parents' understanding of their children's development, in particular what they considered to be "normal" or "abnormal". Parental "choices", situated within meso-systems and chronosystems, related to their choices of service providers, which were based on the proximity, continuity, purpose of visit, language spoken by the provider and past experience of a service. CONCLUSIONS: CALD parents have diverse experiences with primary health care providers which are influenced by their awareness of available services in the context of their duration of stay in Australia. The role of the general practitioner, with language concordance, suggests the importance of diversity within the primary care health workforce in this region. There is a need for ongoing cultural competence training of health professionals and provisions need to be made to support frequent use of interpreters at general practices in Australia.
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Desarrollo Infantil , Servicios de Salud del Niño/normas , Diversidad Cultural , Accesibilidad a los Servicios de Salud/normas , Niño , Servicios de Salud Comunitaria/organización & administración , Competencia Cultural , Emigrantes e Inmigrantes/estadística & datos numéricos , Femenino , Grupos Focales , Personal de Salud/estadística & datos numéricos , Humanos , Lenguaje , Nueva Gales del Sur , Padres , Atención Primaria de Salud/organización & administración , Factores SocioeconómicosRESUMEN
Communication impairments (CIs) in preschool children are common and can have long-term adverse consequences if not detected and treated early. This study investigated the knowledge, training and practice of primary health-care practitioners in the identification and management of CIs in preschool-aged children. A cross-sectional survey of 277 primary health-care practitioners in the Inner West and South West Sydney was undertaken. The majority of practitioners surveyed understood the importance of early identification of CIs. Eight per cent ofpractitioners correctly identified all of the 'red flags' for verbal and non-verbal communication. The majority (80%) correctly described the management of a typical case presentation. Two-thirds of practitioners reported using a tool in their practice for developmental surveillance, but the quality of surveillance tools was variable. One-third felt their training in this area was poor and 90% indicated they would like further training. Barriers to referral included waiting times, availability and cost of services. We concluded that primary health-care practitioners are aware that CIs are significant and they need to be identified early. There are opportunities for further training and promoting high-quality developmental surveillance in primary care. In addition, there are broader health system issues that include promotion of an integrated response to the detection and management of CIs.
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Trastornos de la Comunicación/diagnóstico , Trastornos de la Comunicación/terapia , Conocimientos, Actitudes y Práctica en Salud , Pautas de la Práctica en Medicina/estadística & datos numéricos , Atención Primaria de Salud , Australia , Preescolar , Femenino , Humanos , Masculino , Encuestas y CuestionariosRESUMEN
BACKGROUND: Early childhood interventions have the potential to reduce children's developmental inequities. We aimed to estimate the extent to which household income supplements for lower-income families in early childhood could close the gap in children's developmental outcomes and parental mental health. METHODS: Data were drawn from a nationally representative birth cohort, the Longitudinal Study of Australian Children (N = 5107), which commenced in 2004 and conducted follow-ups every two years. Exposure was annual household income (0-1 year). Outcomes were children's developmental outcomes, specifically social-emotional, physical functioning, and learning (bottom 15% versus top 85%) at 4-5 years, and an intermediate outcome, parental mental health (poor versus good) at 2-3 years. We modelled hypothetical interventions that provided a fixed-income supplement to lower-income families with a child aged 0-1 year. Considering varying eligibility scenarios and amounts motivated by actual policies in the Australian context, we estimated the risk of poor outcomes for eligible families under no intervention and the hypothetical intervention using marginal structural models. The reduction in risk under intervention relative to no intervention was estimated. RESULTS: A single hypothetical supplement of AU$26,000 (equivalent to â¼USD$17,350) provided to lower-income families (below AU$56,137 (â¼USD$37,915) per annum) in a child's first year of life demonstrated an absolute reduction of 2.7%, 1.9% and 2.6% in the risk of poor social-emotional, physical functioning and learning outcomes in children, respectively (equivalent to relative reductions of 12%, 10% and 11%, respectively). The absolute reduction in risk of poor mental health in eligible parents was 1.0%, equivalent to a relative reduction of 7%. Benefits were similar across other income thresholds used to assess eligibility (range, AU$73,329-$99,864). CONCLUSIONS: Household income supplements provided to lower-income families may benefit children's development and parental mental health. This intervention should be considered within a social-ecological approach by stacking complementary interventions to eliminate developmental inequities.
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Renta , Padres , Niño , Preescolar , Humanos , Estudios Longitudinales , Australia , Ajuste SocialRESUMEN
BACKGROUND: Asthma is the leading source of unscheduled hospitalisation in Australian children, with a high burden placed upon children, their parents/families, and the healthcare system. In Australia, there are widening disparities in paediatric asthma care including inequitable access to comprehensive ongoing and planned asthma care for children. METHODS: The Asthma Care from Home Project is a comprehensive virtually enabled asthma model of care that aims to a. supports families, communities and healthcare providers, b. flexible and locally acceptable, and c. allow for adoption of innovations such as digital technologies so that asthma care can be provided "from home", reduce potentially preventable asthma hospitalisation, and ensure satisfaction at a patient, family, and healthcare provider level. The model of care includes standardisation of discharge care through provision of an asthma discharge resource pack containing individual asthma action plan, follow-up letters for the child's general practitioner (GP) and school/child care, and access to online asthma educational sessions and resource; post-discharge care coordination through text message reminders for families for regular GP review, email correspondence with their child's GP and school/childcare; and virtual home visits to discuss home environmental triggers, provide personalised asthma education and respond to parental concerns relating to their child's asthma. This study is comprised of three components: 1) a quasi-experimental pre/post impact evaluation assessing the impact of the model on healthcare utilisation and asthma control measures; 2) a mixed-methods implementation evaluation to understand how and why our intervention was effective or ineffective in producing systems change; 3) an economic evaluation to assess the cost-effectiveness of the proposed model of care from a family and health services perspective. DISCUSSION: This study aims to improve access to asthma care for children in rural and remote areas. Implementation evaluation and economic evaluation will provide insights into the sustainability and scalability of the asthma model of care.
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Asma , Población Rural , Asma/terapia , Humanos , Niño , Nueva Gales del Sur , Preescolar , Femenino , Masculino , Telemedicina , AdolescenteRESUMEN
The purpose of this perspective article is to emphasise the importance of the 'First 2000 Days' policy of life from conception to age five, and to propose new directions in which the policy's implementation could be extended for the benefit of children and families. The proposed approach highlights principles of responsiveness, integration, sustainability and equity, specifying initiatives that embody the kind of innovation each principle aspires to. The article also proposes innovations in data collection and linkages that would strengthen the implementation of first 2000 days policies and frameworks. This perspective proposes a framework that could improve health systems implementation of services in the first 5 years of life, by proposing a well-coordinated continuum of services with integrated physical and digital solutions. This has the potential to transform how the health system monitors and responds to children and families' needs in the critical early years of life during and beyond the current pandemic.
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COVID-19 , Niño , Humanos , Pandemias , Familia , Políticas , Atención a la SaludRESUMEN
PURPOSE: To examine the need, feasibility and acceptability of speech-language pathologists (SLPs) implementing a systematic, routine, unmet social needs identification and referral pathway, as a means of promoting health equity and addressing Sustainable Development Goals (SDGs). METHOD: Quality Improvement methodologies were used to adapt and pilot an unmet social needs identification and referral pathway for use with parents/carers of children with communication disabilities referred to an urban Australian speech-language pathology service. SLPs were surveyed about the acceptability and feasibility of this practice. RESULT: The majority of parents/carers, 289 of 293 (99%), agreed to participate in the study, with 31 of the 289 (11%) reporting concerns about unmet social needs. The most common unmet need related to household bills (n = 17, 28%), followed by childcare (n = 12, 20%), employment (n = 10, 16%), food (n = 8, 13%), housing (n = 7, 11%), and parent/carer education (n = 7, 11%). The majority of these families, 26 of 31 (84%), requested referral to, or information about, local community services/resources. SLPs reported high levels of acceptability (93%) and feasibility (98%). CONCLUSION: This study demonstrates the need, feasibility and acceptability of SLPs implementing an unmet social needs identification and referral pathway, and the potential to scale this initiative across other speech-language pathology services and allied health contexts. This paper focusses on SDG 1, SDG 2, SDG 3, SDG 4, SDG 8, SDG 10, SDG 11, SDG 16, and also addresses SDG 17.
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Patología del Habla y Lenguaje , Desarrollo Sostenible , Humanos , Niño , Australia , PadresRESUMEN
BACKGROUND: The identification of reproducible subtypes within autistic populations is a priority research area in the context of neurodevelopment, to pave the way for identification of biomarkers and targeted treatment recommendations. Few previous studies have considered medical comorbidity alongside behavioural, cognitive, and psychiatric data in subgrouping analyses. This study sought to determine whether differing behavioural, cognitive, medical, and psychiatric profiles could be used to distinguish subgroups of children on the autism spectrum in the Australian Autism Biobank (AAB). METHODS: Latent profile analysis was used to identify subgroups of children on the autism spectrum within the AAB (n = 1151), utilising data on social communication profiles and restricted, repetitive, and stereotyped behaviours (RRBs), in addition to their cognitive, medical, and psychiatric profiles. RESULTS: Our study identified four subgroups of children on the autism spectrum with differing profiles of autism traits and associated comorbidities. Two subgroups had more severe clinical and cognitive phenotype, suggesting higher support needs. For the 'Higher Support Needs with Prominent Language and Cognitive Challenges' subgroup, social communication, language and cognitive challenges were prominent, with prominent sensory seeking behaviours. The 'Higher Support Needs with Prominent Medical and Psychiatric and Comorbidity' subgroup had the highest mean scores of challenges relating to social communication and RRBs, with the highest probability of medical and psychiatric comorbidity, and cognitive scores similar to the overall group mean. Individuals within the 'Moderate Support Needs with Emotional Challenges' subgroup, had moderate mean scores of core traits of autism, and the highest probability of depression and/or suicidality. A fourth subgroup contained individuals with fewer challenges across domains (the 'Fewer Support Needs Group'). LIMITATIONS: Data utilised to identify subgroups within this study was cross-sectional as longitudinal data was not available. CONCLUSIONS: Our findings support the holistic appraisal of support needs for children on the autism spectrum, with assessment of the impact of co-occurring medical and psychiatric conditions in addition to core autism traits, adaptive functioning, and cognitive functioning. Replication of our analysis in other cohorts of children on the autism spectrum is warranted, to assess whether the subgroup structure we identified is applicable in a broader context beyond our specific dataset.
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BACKGROUND: Prevention is key to reducing socioeconomic inequities in children's mental health problems, especially given limited availability and accessibility of services. We investigated the potential to reduce inequities for disadvantaged children by improving parental mental health and preschool attendance in early childhood. METHODS: Data from the nationally representative birth cohort, Longitudinal Study of Australian Children (N = 5107, commenced in 2004), were used to examine the impact of socioeconomic disadvantage (0-1 year) on children's mental health problems (10-11 years). Using an interventional effects approach, we estimated the extent to which inequities could be reduced by improving disadvantaged children's parental mental health (4-5 years) and their preschool attendance (4-5 years). RESULTS: Disadvantaged children had a higher prevalence of elevated mental health symptoms (32.8%) compared with their nondisadvantaged peers (18.7%): confounder-adjusted difference in prevalence is 11.6% (95% confidence interval: 7.7% to 15.4%). Improving disadvantaged children's parental mental health and their preschool attendance to the level of their nondisadvantaged peers could reduce 6.5% and 0.3% of socioeconomic differences in children's mental health problems, respectively (equivalent to 0.8% and 0.04% absolute reductions). If these interventions were delivered in combination, a 10.8% (95% confidence interval: 6.9% to 14.7%) higher prevalence of elevated symptoms would remain for disadvantaged children. CONCLUSIONS: Targeted policy interventions that improve parental mental health and preschool attendance for disadvantaged children are potential opportunities to reduce socioeconomic inequities in children's mental health problems. Such interventions should be considered within a broader, sustained, and multipronged approach that includes addressing socioeconomic disadvantage itself.