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BACKGROUND: Integrated Child Development Services (ICDS) scheme, a large public health program, addresses the needs of young children with Anganwadi Workers (AWWs) as frontline agents of delivery. A scalable program incorporating early child development interventions (ASPIRE) has been developed to complement the program and address some of its gaps. OBJECTIVES: This paper describes formative work done with AWWs, as part of ASPIRE to assess their understanding of early childhood development (ECD) and acceptability of a novel ECD intervention using digital technology. MATERIALS AND METHODS: Six focus group discussions (FGDs) were conducted with 31 AWWs, using a semi-structured guide. RESULTS: Framework analysis of their responses from FGDs led to the identification of three themes: (1) time use, (2) understanding of ECD, and (3) delivering messages using videos. The findings suggest that AWWs tight schedules often leave them feeling overburdened with work. They are aware of factors that can aid as well as hinder child growth and development, but their understanding of play is limited to games played by older children. They expressed acceptability in using a video intervention, specifying features that would increase relevance for families. CONCLUSION: Integration of novel ECD interventions delivered by frontline workers needs to take into account their existing work schedules and associated challenges. Training on ECD interventions will need to broaden AWWs understanding of the critical foundational experiences which responsive caregiving and early child stimulation can provide.
Subject(s)
Child Development , Focus Groups , Humans , India , Female , Male , Child, Preschool , Qualitative Research , Adult , Early Intervention, Educational/organization & administration , Early Intervention, Educational/methods , Child Health Services/organization & administration , InfantABSTRACT
INTRODUCTION: Early childhood development forms the foundations for functioning later in life. Thus, accurate monitoring of developmental trajectories is critical. However, such monitoring often relies on time-intensive assessments which necessitate administration by skilled professionals. This difficulty is exacerbated in low-resource settings where such professionals are predominantly concentrated in urban and often private clinics, making them inaccessible to many. This geographic and economic inaccessibility contributes to a significant 'detection gap' where many children who might benefit from support remain undetected. The Scalable Transdiagnostic Early Assessment of Mental Health (STREAM) project aims to bridge this gap by developing an open-source, scalable, tablet-based platform administered by non-specialist workers to assess motor, social and cognitive developmental status. The goal is to deploy STREAM through public health initiatives, maximising opportunities for effective early interventions. METHODS AND ANALYSIS: The STREAM project will enrol and assess 4000 children aged 0-6 years from Malawi (n=2000) and India (n=2000). It integrates three established developmental assessment tools measuring motor, social and cognitive functioning using gamified tasks, observation checklists, parent-report and audio-video recordings. Domain scores for motor, social and cognitive functioning will be developed and assessed for their validity and reliability. These domain scores will then be used to construct age-adjusted developmental reference curves. ETHICS AND DISSEMINATION: Ethical approval has been obtained from local review boards at each site (India: Sangath Institutional Review Board; All India Institute of Medical Science (AIIMS) Ethics Committee; Indian Council of Medical Research-Health Ministry Screening Committee; Malawi: College of Medicine Research and Ethics Committee; Malawi Ministry of Health-Blantyre District Health Office). The study adheres to Good Clinical Practice standards and the ethical guidelines of the 6th (2008) Declaration of Helsinki. Findings from STREAM will be disseminated to participating families, healthcare professionals, policymakers, educators and researchers, at local, national and international levels through meetings, academic journals and conferences.
Subject(s)
Child Development , Mental Health , Humans , Child, Preschool , Infant , Child , India , Malawi , Female , Infant, Newborn , Male , Reproducibility of Results , Research DesignABSTRACT
Introduction: The onset of the COVID-19 pandemic and subsequent lockdowns in March 2020 disrupted the lives of families across India. The lockdown related restrictions brought forth a multitude of challenges including loss of employment, social isolation, school closures and financial burdens. Specifically, it also resulted in the restriction of health-care services for children with neurodevelopmental disabilities. Methods: This qualitative study was conducted as a part of a larger trial in India to understand the experiences of families of young children with autism during the pandemic. In-depth interviews were carried out with 14 caregivers residing in New Delhi, India. Results: Our findings identified pandemic and lockdown's universal impacts on family life and financial stability stemming from job loss, business closure, and salary deductions, affecting quality of life of families. Furthermore, COVID-19 pandemic's impact on autistic children was evident through limited access to essential services and financial challenges related service interruptions even after resumption of services. The lockdown's novelty also affected children's behavior, with both challenging behavioral changes and positive impacts. Primary caregivers, predominantly mothers, assumed additional responsibilities in household tasks, schooling, and therapy administration. While some these experiences were universally experienced, a few of these improved outcomes for autistic children. Despite challenges, parents expressed gratitude for their family's safety and well-being during the difficult time. Discussions: These findings inform service provision for vulnerable families and offer implications for designing interventions such as credit schemes for families, guidance and resources for establishing and maintaining routines of children with autism, adopting flexible and adaptable approaches to service delivery, and special provisions for children with autism to be able to maintain their routines outside of home. Furthermore, the study highlights the need for comprehensive support, including educational resources and stress management counselling to empower parents in supporting essential care and routines for their children during such unprecedented times.
Subject(s)
Autism Spectrum Disorder , COVID-19 , Child, Preschool , Humans , Autism Spectrum Disorder/epidemiology , COVID-19/epidemiology , Pandemics , Parents , Quality of Life , Qualitative ResearchABSTRACT
LAY ABSTRACT: Parents of autistic children and health professionals who work with autistic children in Brazil had positive views about introducing Paediatric Autism Communication Therapy as a therapy for autistic children in Brazil. The parents and clinicians also mentioned some difficulties about using Paediatric Autism Communication Therapy in Brazil. We made adaptations to Paediatric Autism Communication Therapy to address these difficulties. Paediatric Autism Communication Therapy is a therapy to support the development of social and communication skills for autistic children aged 2-10 years. The therapy is conducted with the autistic child's parent. Paediatric Autism Communication Therapy has not been used in Brazil before. There are few therapy options available for autistic children in Brazil and we believed that Paediatric Autism Communication Therapy may be useful. We asked three groups of people in Brazil about their views of Paediatric Autism Communication Therapy, after explaining how the therapy works. Group 1 included 18 parents of autistic children aged 2-10 years. Group 2 included 20 health professionals such as psychologists who work with autistic children. Group 3 included 15 parents of autistic children aged 2-7 years who received the Paediatric Autism Communication Therapy. We learned that parents and clinicians felt that Paediatric Autism Communication Therapy would be a beneficial therapy for autistic children in Brazil. We also found out about the challenges of using Paediatric Autism Communication Therapy in Brazil. We used these findings to make small cultural adaptations to Paediatric Autism Communication Therapy to make it more suitable for Brazil.
Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Humans , Child , Autistic Disorder/therapy , Feasibility Studies , Brazil , Autism Spectrum Disorder/therapy , Communication , ParentsABSTRACT
LAY ABSTRACT: Autism is diagnosed by highly trained professionals- but most autistic people live in parts of the world that harbour few or no such autism specialists and little autism awareness. So many autistic people go undiagnosed, misdiagnosed, and misunderstood. We designed an app (START) to identify autism and related conditions in such places, in an attempt to address this global gap in access to specialists. START uses computerised games and activities for children and a questionnaire for parents to measure social, sensory, and motor skills. To check whether START can flag undiagnosed children likely to have neurodevelopmental conditions, we tested START with children whose diagnoses already were known: Non-specialist health workers with just a high-school education took START to family homes in poor neighbourhoods of Delhi, India to work with 131 two-to-seven-year-olds. Differences between typically and atypically developing children were highlighted in all three types of skills that START assesses: children with neurodevelopmental conditions preferred looking at geometric patterns rather than social scenes, were fascinated by predictable, repetitive sensory stimuli, and had more trouble with precise hand movements. Parents' responses to surveys further distinguished autistic from non-autistic children. An artificial-intelligence technique combining all these measures demonstrated that START can fairly accurately flag atypically developing children. Health workers and families endorsed START as attractive to most children, understandable to health workers, and adaptable within sometimes chaotic home and family environments. This study provides a proof of principle for START in digital screening of autism and related conditions in community settings.
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Autism Spectrum Disorder , Autistic Disorder , Child Development Disorders, Pervasive , Humans , Child , Autistic Disorder/diagnosis , Autism Spectrum Disorder/diagnosis , India , ParentsSubject(s)
Autism Spectrum Disorder , Autistic Disorder , Child Development Disorders, Pervasive , Child , HumansABSTRACT
BACKGROUND: Autism Spectrum Disorder (ASD) is a neurodevelopmental disability affecting at least 5 million children in South Asia. Majority of these children are without access to evidence-based care. The UK Pre-school Autism Communication Therapy (PACT) is the only intervention to have shown sustained impact on autism symptoms. It was systematically adapted for non-specialist community delivery in South Asia, as the 'Parent-mediated Autism Social Communication Intervention for non-Specialists (PASS)' and extended 'PASS Plus' interventions. RCTs of both showed feasibility, acceptability and positive effect on parent and child dyadic outcomes. METHODS: The Communication-centred Parent-mediated treatment for Autism Spectrum Disorder in South Asia (COMPASS) trial is now a scale-up two-centre, two-arm single (rater) blinded random allocation parallel group study of the PASS Plus intervention in addition to treatment as usual (TAU) compared to TAU alone, plus health economic evaluation embedded in the India health system. Two hundred forty children (approximately 120 intervention/120 TAU) with ASD aged 2-9 years will be recruited from two tertiary care government hospitals in New Delhi, India. Accredited Social Health Activists will be one of the intervention delivery agents. Families will undertake up to 12 communication sessions over 8 months and will be offered the Plus modules which address coexisting problems. The trial's primary endpoint is at 9 months from randomisation, with follow-up at 15 months. The primary outcome is autism symptom severity; secondary outcomes include parent-child communication, child adaptation, quality of life and parental wellbeing. Primary analysis will follow intention-to-treat principles using linear mixed model regressions with group allocation and repeated measures as random effects. The cost-effectiveness analysis will use a societal perspective over the 15-month period of intervention and follow-up. DISCUSSION: If clinically and cost-effective, this programme will fill an important gap of scalable interventions delivered by non-specialist health workers within the current care pathways for autistic children and their families in low-resource contexts. The programme has been implemented through the COVID-19 pandemic when restrictions were in place; intervention delivery and evaluation processes have been adapted to address these conditions. TRIAL REGISTRATION: ISRCTN; ISRCTN21454676 ; Registered 22 June 2018.
Subject(s)
Autism Spectrum Disorder , Humans , Child, Preschool , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/therapy , Cost-Benefit Analysis , Quality of Life , Pandemics , India , Randomized Controlled Trials as TopicABSTRACT
Introduction: Intervention strategies that seek to improve early childhood development outcomes are often targeted at the primary caregivers of children, usually mothers. The interventions require mothers to assimilate new information and then act upon it by allocating sufficient physical resources and time to adopt and perform development promoting behaviours. However, women face many competing demands on their resources and time, returning to familiar habits and behaviours. In this study, we explore mothers' allocation of time for caregiving activities for children under the age of 2, nested within a cluster randomised controlled trial of a nutrition and care for development intervention in rural Haryana, India. Methods: We collected quantitative maternal time use data at two time points in rural Haryana, India, using a bespoke survey instrument. Data were collected from 704 mothers when their child was 12 months old, and 603 mothers when their child was 18 months old. We tested for significant differences in time spent by mothers on different activities when children are 12 months of age vs. 18 months of age between arms as well as over time, using linear regression. As these data were collected within a randomised controlled trial, we adjusted for clusters using random effects when testing for significant differences between the two time points. Results: At both time points, no statistically significant difference in maternal time use was found between arms. On average, mothers spent most of their waking time on household chores (over 6â h and 30â min) at both time points. When children were aged 12 months, approximately three and a half hours were spent on childcare activities for children under the age of 2 years. When children were 18 months old, mothers spent more time on income generating activities (30â min) than when the children were 12 years old, and on leisure (approximately 4â h and 30â min). When children were 18 months old, less time was spent on feeding/breastfeeding children (30â min less) and playing with children (15â min). However, mothers spent more time talking or reading to children at 18 months than at 12 months. Conclusion: We find that within a relatively short period of time in early childhood, maternal (or caregiver) time use can change, with time allocation being diverted away from childcare activities to others. This suggests that changing maternal time allocation in resource poor households may be quite challenging, and not allow the uptake of new and/or optimal behaviours.
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Introduction: There is limited evidence from low and middle-income settings on the effectiveness of early child development interventions at scale. To bridge this knowledge-gap we implemented the SPRING home visiting program where we tested integrating home visits into an existing government program (Pakistan) and employing a new cadre of intervention workers (India). We report the findings of the process evaluation which aimed to understand implementation. Methods and materials: We collected qualitative data on acceptability and barriers and facilitators for change through 24 in-depth interviews with mothers; eight focus group discussions with mothers, 12 with grandmothers, and 12 with fathers; and 12 focus group discussions and five in-depth interviews with the community-based agents and their supervisors. Results: Implementation was sub-optimal in both settings. In Pakistan issues were low field-supervision coverage and poor visit quality related to issues scheduling supervision, a lack of skill development, high workloads and competing priorities. In India, issues were low visit coverage - in part due to employing new workers and an empowerment approach to visit scheduling. Coaching caregivers to improve their skills was sub-optimal in both sites, and is likely to have contributed to caregiver perceptions that the intervention content was not new and was focused on play activities rather than interaction and responsivity - which was a focus of the coaching. In both sites caregiver time pressures was a key reason for low uptake among families who received visits. Discussion: Programs need feasible strategies to maximize quality, coverage and supervision including identifying and managing problems through monitoring and feedback loops. Where existing community-based agents are overstretched and system strengthening is unlikely, alternative implementation strategies should be considered such as group delivery. Core intervention ingredients such as coaching should be prioritized and supported during training and implementation. Given that time and resource constraints were a key barrier for families a greater focus on communication, responsivity and interaction during daily activities could have improved feasibility.
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Introduction: Almost 250 million children fail to achieve their full growth or developmental potential, trapping them in a cycle of continuing disadvantage. Strong evidence exists that parent-focussed face to face interventions can improve developmental outcomes; the challenge is delivering these on a wide scale. SPRING (Sustainable Programme Incorporating Nutrition and Games) aimed to address this by developing a feasible affordable programme of monthly home visits by community-based workers (CWs) and testing two different delivery models at scale in a programmatic setting. In Pakistan, SPRING was embedded into existing monthly home visits of Lady Health Workers (LHWs). In India, it was delivered by a civil society/non-governmental organisation (CSO/NGO) that trained a new cadre of CWs. Methods: The SPRING interventions were evaluated through parallel cluster randomised trials. In Pakistan, clusters were 20 Union Councils (UCs), and in India, the catchment areas of 24 health sub-centres. Trial participants were mother-baby dyads of live born babies recruited through surveillance systems of 2 monthly home visits. Primary outcomes were BSID-III composite scores for psychomotor, cognitive and language development plus height for age z-score (HAZ), assessed at 18 months of age. Analyses were by intention to treat. Results: 1,443 children in India were assessed at age 18 months and 1,016 in Pakistan. There was no impact in either setting on ECD outcomes or growth. The percentage of children in the SPRING intervention group who were receiving diets at 12 months of age that met the WHO minimum acceptable criteria was 35% higher in India (95% CI: 4-75%, p = 0.023) and 45% higher in Pakistan (95% CI: 15-83%, p = 0.002) compared to children in the control groups. Discussion: The lack of impact is explained by shortcomings in implementation factors. Important lessons were learnt. Integrating additional tasks into the already overloaded workload of CWs is unlikely to be successful without additional resources and re-organisation of their goals to include the new tasks. The NGO model is the most likely for scale-up as few countries have established infrastructures like the LHW programme. It will require careful attention to the establishment of strong administrative and management systems to support its implementation.
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Evidence suggests that parenting an autistic child or a child with neurodevelopmental disabilities can be more challenging than parenting a child meeting their developmental milestones, especially when there is a dearth of support services, such as in low- and middle-income countries (LMICs). Despite the majority of the world's children residing in LMICs, there are limited studies examining the understanding of developmental disorders and autism in these regions. We therefore aim to investigate perceptions of autism and developmental disabilities in caregivers of children in an urban setting in New Delhi, India. Thirteen semi-structured interviews with parents/caregivers of children were conducted in three groups: (1) caregivers with a child with a diagnosis of autism spectrum disorder (ASD); (2) caregivers with a child with a diagnosis of intellectual disability (ID); (3) and caregivers with children meeting their developmental milestones. Transcripts were analysed using framework analysis. Three themes on the impact of cultural and contextual factors on the recognition, interpretation, and reporting of autistic symptoms are discussed, and additional themes focus on the impact of diagnosis and family support. Our findings highlighted a vital need for greater community awareness and recognition of autism in India, for example through community and healthcare training, which may help to reduce stigma and facilitate wider family support.
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Autism Spectrum Disorder , Autistic Disorder , Intellectual Disability , Child , Humans , Caregivers , Intellectual Disability/epidemiology , India/epidemiologyABSTRACT
Background: Early adversities negatively impact children's growth and development, putatively mediated by chronic physiological stress resulting from these adverse experiences. We aimed to estimate the associations between prospectively measured cumulative early adversities with growth and cognition outcomes in rural Indian preschool children and to explore if hair cortisol concentration (HCC), a measure of chronic physiological stress, mediated the above association. Methods: Participants were recruited from the SPRING cRCT in rural Haryana, India. Adversities experienced through pregnancy and the first year of life were measured in 1304 children at 12-months. HCC was measured at 12-months in 845 of them. Outcome measures were height-for-age-z-score (HAZ), weight-for-age-z-score (WAZ) and cognition, measured in 1124 children followed up at 3-years. Cognition was measured using a validated tablet-based gamified tool named DEEP. Results: Cumulative adversities at 12-months were inversely associated with all outcomes measures at 3-years. Each unit increase in adversity score led to a decrease of 0·08 units [95% confidence interval (CI):-0·11,-0·06] in DEEP-z-score; 0·12 units [-0·14,-0·09] in HAZ and 0·11 units [-0·13,-0·09] in WAZ. 12-month HCC was inversely associated with DEEP-z-score (-0·09 [-0·16,-0·01]) and HAZ (-0·12 [-0·20,-0·04]), but the association with WAZ was not significant (p = 0·142). HCC marginally mediated the association between cumulative adversities and HAZ (proportion mediated = 0·06, p = 0·014). No evidence of mediation was found for the cognition outcome. Conclusions: Cumulative early adversities and HCC measured at 12-months have persistent negative effects on child growth and cognition at 3-years. The association between adversities and these two child outcomes were differentially mediated by HCC, with no evidence of mediation observed for the cognitive outcome. Future studies should focus on other stress biomarkers, and alternate pathways such as the immune, inflammation and cellular ageing pathways, to unpack key mechanisms underlying the established relationship between early adversities and poor child outcomes.
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BACKGROUND: The economic burden of autism is substantial and includes a range of costs, including healthcare, education, productivity losses, informal care and respite care, among others. In India, approximately, 2 million children aged 2-9 years have autism. Given the likely substantial burden of illness and the need to identify effective and cost-effective interventions, this research aimed to produce a comprehensive cost of illness inventory (COII) suitable for children with autism in South Asia (India) to support future research. METHODS: A structured and iterative design process was followed to create the COII, including literature reviews, interviews with caregivers, pilot testing and translation. Across the development of the COII, thirty-two families were involved in the design and piloting of the tool. The COII was forward translated (from English to Hindi) and back translated. Each stage of the process of development of the COII resulted in the further refinement of the tool. RESULTS: Domains covered in the final COII include education, childcare, relocation, healthcare contacts (outpatient, inpatient, medical emergencies, investigations and medication), religious retreats and rituals, specialist equipment, workshops and training, special diet, support and care, certification, occupational adjustments and government rebates/schemes. Administration and completion of the COII determined it to be feasible to complete in 35 minutes by qualified and trained researchers. The final COII is hosted by REDCap Cloud and is a bilingual instrument (Hindi and English). CONCLUSIONS: The COII was developed using experiences gathered from an iterative process in a metropolitan area within the context of one low- and middle-income country (LMIC) setting, India. Compared to COII tools used for children with autism in high-income country settings, additional domains were required, such as complimentary medication (e.g. religious retreats and homeopathy). The COII will allow future research to quantify the cost of illness of autism in India from a broad perspective and will support relevant economic evaluations. Understanding the process of developing the questionnaire will help researchers working in LMICs needing to adapt the current COII or developing similar questionnaires.
Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/therapy , Child , Cost of Illness , Humans , India , Surveys and QuestionnairesABSTRACT
Background: As countries like India improve access to maternal and infant care, the health systems need to develop services that enable all children to thrive. A key demographic which needs to be supported are children with disabilities, such as autism. With an estimated prevalence of one percent, there are over five million young children who need services to support their needs. However, the paucity of specialist care makes access to interventions difficult. In this context a public health research not-for-profit is evaluating the effectiveness of the task-sharing approach to support the delivery of an evidenced social communication intervention for young children with autism. This paper describes the process of engaging and training the non-specialist frontline Accredited Social Health Activists (ASHAs), who are embedded within the Ministry of Health and Family Welfare under the Delhi State Health Mission, to deliver a complex intervention for autism to inform the future scalability of services for neurodevelopmental disorders. Methods: The present study describes the process which included (i) engagement meetings, (ii) recruitment, (iii) training, (iv) internship, and (v) competency evaluation. The shortlisted ASHAs received a 7-day classroom training followed by an internship period with practice cases. Finally, competency assessments, comprising of a test of knowledge and skills through role-plays, was administered. Results: Twenty three Primary Urban Health Centers across seven districts of Delhi were approached and 408 ASHAs were engaged in initial meetings. Telephonic screening with 127 ASHAs resulted in 72 ASHAs being selected for in-person interviews. Of the 45 ASHAs who attended, 33 were shortlisted for training and 18 completed it. Fifteen ASHAs entered the internship of which 7 ASHAs achieved competency. Discussion and conclusion: There was significant attrition along the pathway to having a competent non-specialist worker deliver a complex autism intervention. The lessons learnt from this process can inform the possibility of developing a cadre of disability specific frontline health workers who can deliver evidence-based interventions for neurodevelopmental disorders under supervision.
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Introduction: The past decade has seen key advances in early intervention for autistic children in high-income countries, with most evidence based on specialist delivery of interventions. The care gap seen in low- and middle-income countries (LMIC) remains close to 100%. A key challenge in addressing this care gap concerns the paucity of specialists available to deliver services. Task-sharing provides an important potential solution; there is a need to identify interventions that are suitable for scaled-up delivery through task-sharing in low-resourced settings. We aimed to conduct a scoping review to identify studies which reported autism intervention delivered by non-specialists within LMIC and, using established frameworks, specify intervention components with evidence of successful non-specialist delivery. Methods: A scoping literature search, conducted within four databases, generated 2,535 articles. Duplicates were removed, followed by screening of titles and abstracts, with 10% double-rated for reliability. 50 full text articles were then screened independently by two raters. Articles were included if studies: (a) were conducted in LMIC; (b) included samples of autistic children (age < 10); (c) evaluated psycho-social interventions delivered by non-specialists; (d) reported child outcomes; and (e) were peer-reviewed full-texts in English. Two established frameworks - @Practicewise and NDBI-Fi framework - were then used to ascertain the commonly delivered components of these interventions. Results: Two studies met the inclusion criteria. Both studies evaluated parent-mediated interventions delivered by non-specialists in South Asia. Through the two frameworks, we identified elements and techniques that had been delivered successfully by non-specialists. Conclusion: There is evidence from two acceptability and feasibility trials that non-specialists can be trained to deliver some intervention elements and techniques within parent-mediated interventions, with good fidelity and acceptability and evidence of effectiveness. The review points up the lack of a widespread evidence base in this area and need for further research in low resourced settings, including well-powered trials and mechanistic analyses to identify active ingredients. A focus on the pre-requisites for non-specialist delivery is critical to reduce inequity and provide universal health coverage within resource-constrained health systems.
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Electroencephalography (EEG) provides a non-invasive means to advancing our understanding of the development and function of the brain. However, the majority of the world's population residing in low and middle income countries has historically been limited from contributing to, and thereby benefiting from, such neurophysiological research, due to lack of scalable validated methods of EEG data collection. In this study, we establish a standard operating protocol to collect approximately 3 min each of eyes-open and eyes-closed resting-state EEG data using a low-cost portable EEG device in rural households through formative work in the community. We then evaluate the acceptability of these EEG assessments to young children and feasibility of administering them through non-specialist workers. Finally, we describe properties of the EEG recordings obtained using this novel approach to EEG data collection. The formative phase was conducted with 9 families which informed protocols for consenting, child engagement strategies and data collection. The protocol was then implemented on 1265 families. 977 children (Mean age = 38.8 months, SD = 0.9) and 1199 adults (Mean age = 27.0 years, SD = 4) provided resting-state data for this study. 259 children refused to wear the EEG cap or removed it, and 58 children refused the eyes-closed recording session. Hardware or software issues were experienced during 30 and 25 recordings in eyes-open and eyes-closed conditions respectively. Disturbances during the recording sessions were rare and included participants moving their heads, touching the EEG headset with their hands, opening their eyes within the eyes-closed recording session, and presence of loud sounds in the testing environment. Similar to findings in laboratory-based studies from high-income settings, the percentage of recordings which showed an alpha peak was higher in eyes-closed than eyes-open condition, with the peak occurring most frequently in electrodes at O1 and O2 positions, and the mean frequency of the alpha peak was found to be lower in children (8.43 Hz, SD = 1.73) as compared to adults (10.71 Hz, SD = 3.96). We observed a deterioration in the EEG signal with prolonged device usage. This study demonstrates the acceptability, feasibility and utility of conducting EEG research at scale in a rural low-resource community, while highlighting its potential limitations, and offers the impetus needed to further refine the methods and devices and validate such scalable methods to overcome existing research inequity.
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Of all the potentially modifiable influences affecting children's development and mental health across the life course, none is more important than the quality of parenting and family life. In this position paper, we argue that parenting is fundamentally linked to the development of life skills that children need in order to achieve the United Nations Sustainable Development Goals. We discuss key principles that should inform the development of a global research and implementation agenda related to scaling up evidence-based parenting support programs. Research over the past 50 years has shown that parenting support programs of varied intensity and delivery modality can improve a wide range of developmental, emotional, behavioral and health outcomes for parents and their children. Such findings have been replicated across culturally and socioeconomically diverse samples, albeit primarily in studies from Western countries. We highlight the evidence for the relevance of parenting interventions for attaining the SDGs globally, and identify the barriers to and strategies for achieving their scale-up. The implications of the global COVID-19 pandemic for the delivery of evidence-based parenting support are also discussed.
Subject(s)
COVID-19 , Parenting , Child , Humans , Pandemics , Parenting/psychology , Parents , Sustainable DevelopmentABSTRACT
Background: Measurement of social and cognitive brain development using electroencephalography (EEG) offers the potential for early identification of children with elevated risk of developmental delay. However, there have been no published reports of how acceptable EEG technology is to parents and children within communities, especially in low-resource contexts such as in low and middle income countries (LMICs), which is an important question for the potential scalability of these assessments. We use a mixed-methods approach to examine whether EEG assessments are acceptable to children and their caregivers in a low resource community setting in India. Methods: We assessed the acceptability of neurophysiology research and Braintools (a novel neurodevelopmental assessment toolkit using concurrent EEG and eye-tracking technology) using: 1) a child engagement measure, 2) interviews with caregivers (n=8); 3) survey about caregiver's experience (n=36). Framework analysis was used to analyse interview data. Results: A high level of child engagement in EEG tasks was demonstrated, with children's gaze at the screen during the task averaging at 85.4% (±12.06%) of the task time. External distractions and noise during the tasks were measured, but not found to significantly effect child's attention to the screen during EEG tasks. Key topics were examined using the framework analysis: 1) parental experience of the assessment; and 2) the acceptability of research. From topic 1, four sub-themes were identified: i) caregivers' experience of the assessment, ii) caregivers' perception of child's experience of assessment, iii) logistical barriers and facilitators to participation, and iv) recommendations for improvement. Results from interviews and the survey indicated acceptability for gaze-controlled EEG research for parents and children. From topic 2, three themes were identified: i) caregivers' understanding of the research, ii) barriers to participation, and iii) facilitators to participation. Barriers to participation mainly included logistical challenges, such as geographic location and time, whereas involvement of the wider family in decision making was highlighted as an important facilitator to partake in the research. Conclusions: We demonstrate for the first time the acceptability of conducting neurodevelopmental assessments using concurrent EEG and eye-tracking in preschool children in uncontrolled community LMIC settings. This kind of research appears to be acceptable to the community and we identify potential barriers and facilitators of this research, thus allowing for future large scale research projects to be conducted investigating neurodevelopment and risk factors for suboptimal development in LMICs.
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Timely recognition of autism in children is integral to improve developmental outcomes. This study used mixed-methods (84 case-registers and 20 in-depth interviews with caregivers of children with a diagnosis of autism) to explore the extent to which the nature of parental concerns and prior knowledge of developmental disorders impact the time between symptom recognition and autism diagnosis, and the contextual family, societal and health-system related factors that impede the autism help-seeking pathway. Lack of awareness of age-appropriate child developmental milestones, apparent amongst the community and health professionals, contributed to a 1.5-year delay between parental concerns and autism diagnosis. Recommendations to shorten this help-seeking pathway include harnessing the potential of non-specialist workers to increase awareness and enable developmental monitoring of young children through scalable tools.