Publications

Review our reports, journal articles, conference poster presentations and other materials that have been generated by our research.

The importance of caregivers in child wellbeing and mental health policy and practice

As we celebrate World Caring Day this June, we recognise the vital contributions of families caring for children with disabilities. They play a crucial role in supporting some of society’s most vulnerable children. Despite their invaluable work, caregivers face immense challenges such as emotional stress, financial strain, and social stigma, which can significantly affect their health and caregiving capacity.

Effective solutions exist to support caregivers, with peer support groups and networks offering promising results. These initiatives enhance mental health and foster social connections. However, such resources are often limited due to disjointed mental health and child development services. To make these programmes widely available, it is essential to integrate community-based interventions into health policies and ensure that caregivers are involved in the creation and implementation of these initiatives.

For long-term progress, national and international bodies must prioritise caregiver support through dedicated funding and comprehensive policy frameworks. Developing national action plans that include early detection of disabilities and sustained caregiver assistance, alongside setting measurable goals for improvement, is crucial.

Read more about this call to action here

By fostering strong global partnerships and providing robust support, we can ensure caregivers receive the acknowledgment and assistance they need.

 

 

 

Strategies for addressing the needs of children with and at risk of disabilities

Global leadership is needed to optimise early childhood development for children with disabilities.

We identify geographical and disability-related evidence gaps, and the limited early detection practices for children under 5 years with developmental disabilities.

We call for a collaborative effort to integrate evidence-based interventions, disability inclusive health systems, and comprehensive early child development programmes for equitable child health.

Read more here about the evidence that we found for interventions, and the effectiveness of these interventions here

Opportunities for children with disabilities to play

Children with disabilities face challenges in having enough play opportunities, no matter where they live. We found that these disparities vary between countries and affect children with learning and communication difficulties the most.

What does this mean? It highlights the importance of making sure all kids, especially those with learning or communication challenges, are included in early child development programs. We suggest tailoring these programs to the specific needs of children and supporting parents in countries with fewer resources.

It is crucial to spread awareness and improve attitudes among parents, teachers, and caregivers. We also need policies that break down barriers to participation, ensuring every child gets a fair chance to play and learn.
Read our paper here

The economic burden incurred by families caring for a young child with developmental disability in Uganda

Every year, millions of children worldwide are at risk of developmental difficulties and disabilities, particularly in resource-constrained countries. We estimated the financial burden faced by families caring for a young child with developmental disability in Uganda. The findings were alarming, with families spending on average $949 annually on illness-related costs, including seeking care and loss of employment income. This exceeded the national average household expenditure, and the cost of illness for all households was over 100% of the national GDP per capita. Caregivers faced economic consequences and resorted to wealth-reducing coping strategies in 84% of cases. Families caring for children with severe impairment incurred even higher costs, with paternal abandonment also being common, resulting in financial loss for affected mothers. Caring for a young child with developmental disability was unaffordable for all households. Early care and support programs have the potential to alleviate these financial burdens, but national efforts are urgently needed to address this catastrophic health expenditure. Together, we can make a difference for these marginalised children and their families.

Read more in PLOS Global Public Health

UNICEF and global leadership for disability inclusion in early childhood

We applaud UNICEF’s Disability Inclusion Policy and Strategy 2022-30. This groundbreaking report outlines bold commitments for inclusive education and global health. It’s crucial to utilize existing evidence and lessons from successful programs to accelerate progress. Robust funding, realistic benchmarks, and tangible benefits are essential. Inclusion is about transforming systems, not tokenism. We urge UNICEF to swiftly implement SDG 4.2 to realize the global commitment to inclusive education by 2030. Together, we can make a difference for children with disabilities worldwide!

Read more here from the Lancet

Global leadership is needed to optimize early childhood development for children with disabilities

UNICEF and other international bodies must prioritise development and education for children with disabilities to achieve the United Nations Sustainable Development Goals. With over 53 million children under five years old worldwide facing developmental disabilities, it’s time to take action. Despite slow progress and limited funding, it’s not too late to make a difference. Let’s break barriers, ensure inclusive education, and give every child with a disability the opportunity to thrive. Join us in this global mission for a brighter future!

Read our commentary published in Nature Medicine

Global prevalence of developmental disabilities in children and adolescents: a systematic umbrella review.

The United Nations’ Sustainable Development Goals (SDGs) have put a spotlight on disability-inclusive education, leading to increased interest in understanding the prevalence of developmental disabilities among children worldwide. In this comprehensive umbrella review, we searched the literature for systematic reviews and meta-analyses published between 2015 and 2022. Out of thousands of articles, we selected 10 studies that reported prevalence estimates for various developmental disabilities including ADHD, autism, cerebral palsy, and more. However, limitations in geographical coverage and methodology heterogeneity in the studies prevent us from drawing definitive conclusions about the global and regional prevalence of these disabilities. Nonetheless, our findings highlight the need for population-based data and standardized approaches to inform global health policies and interventions. It’s time to shed light on developmental disabilities and pave the way for inclusive care for all children and adolescents.

Read more here

Assessment of the feasibility of Juntos: A support programme for families of children affected by Congenital Zika Syndrome

When the Zika epidemic struck in 2015-16, thousands of children were born with congenital Zika syndrome (CZS), leaving parents with gaps in health information and support. In response, we developed and piloted Juntos – a participatory support program for caregivers of children with CZS in Brazil. Using a feasibility framework, we assessed the program’s potential across various areas including acceptability, demand, implementation, practicality, adaptation, and limited efficacy. The results were promising, with high acceptability and demand, demonstrated implementation and practicality, and potential for adaptability. Caregivers reported improved quality of life and family relationships, showing limited efficacy. However, further research is needed to explore scalability, integration, expansion, and efficacy. Juntos is empowering caregivers and bridging gaps in Zika-related care, but more studies are warranted to determine its effectiveness in the long run.

Read our article here

Building a Bright Future: Integrating Rehabilitation into Early Childhood Development

The power of rehabilitation in shaping the lives of children with developmental disabilities cannot be overstated. This commentary delves into the global action plan for rehabilitation by the World Health Organisation (WHO) and its alignment with the United Nations’ Sustainable Development Goal for inclusive education. While the importance of a life-course approach to rehabilitation is acknowledged, the critical role of rehabilitation in early childhood development (ECD) for children with disabilities, particularly in low- and middle-income countries, is not adequately addressed. Early intervention through routine screening, assessment, and surveillance from birth is crucial to optimize school readiness for children with developmental disabilities. We must nurture the culture and practice of rehabilitation from infancy, ensuring that children with disabilities have access to effective rehabilitation services over their life course. Global investment in promoting and supporting rehabilitation services within health systems and community settings is essential to achieve the sustainable development goals for children with disabilities. Let’s build a bright future by integrating rehabilitation into early childhood development and unlocking the potential of every child.

Read our article here

Cerebral palsy and developmental intellectual disability in children younger than 5 years

Children with developmental disabilities, such as cerebral palsy and intellectual disability, face significant challenges in accessing education and achieving optimal educational outcomes. This global study reveals that millions of children under 5 years old are estimated to have cerebral palsy or intellectual disability, with the majority residing in low-income and middle-income countries. These disabilities account for a significant proportion of years lived with disability (YLDs) worldwide. The African Region has the highest prevalence of cerebral palsy, while South-East Asia Region has the highest prevalence of intellectual disability. It’s time for universal early detection and support services to prioritize inclusive education for these children, in alignment with the United Nations’ Sustainable Development Goals. Let’s unlock the potential of every child and ensure they have the opportunity to thrive in school and beyond.

Read the article here

The importance of caregivers in child wellbeing and mental health policy and practice

As we celebrate World Caring Day this June, we recognise the vital contributions of families caring for children with disabilities. They play a crucial role in supporting some of society’s most vulnerable children. Despite their invaluable work, caregivers face immense challenges such as emotional stress, financial strain, and social stigma, which can significantly affect their health and caregiving capacity.

Effective solutions exist to support caregivers, with peer support groups and networks offering promising results. These initiatives enhance mental health and foster social connections. However, such resources are often limited due to disjointed mental health and child development services. To make these programmes widely available, it is essential to integrate community-based interventions into health policies and ensure that caregivers are involved in the creation and implementation of these initiatives.

For long-term progress, national and international bodies must prioritise caregiver support through dedicated funding and comprehensive policy frameworks. Developing national action plans that include early detection of disabilities and sustained caregiver assistance, alongside setting measurable goals for improvement, is crucial.

Read more about this call to action here

By fostering strong global partnerships and providing robust support, we can ensure caregivers receive the acknowledgment and assistance they need.

 

 

 

Strategies for addressing the needs of children with and at risk of disabilities

Global leadership is needed to optimise early childhood development for children with disabilities.

We identify geographical and disability-related evidence gaps, and the limited early detection practices for children under 5 years with developmental disabilities.

We call for a collaborative effort to integrate evidence-based interventions, disability inclusive health systems, and comprehensive early child development programmes for equitable child health.

Read more here about the evidence that we found for interventions, and the effectiveness of these interventions here

Opportunities for children with disabilities to play

Children with disabilities face challenges in having enough play opportunities, no matter where they live. We found that these disparities vary between countries and affect children with learning and communication difficulties the most.

What does this mean? It highlights the importance of making sure all kids, especially those with learning or communication challenges, are included in early child development programs. We suggest tailoring these programs to the specific needs of children and supporting parents in countries with fewer resources.

It is crucial to spread awareness and improve attitudes among parents, teachers, and caregivers. We also need policies that break down barriers to participation, ensuring every child gets a fair chance to play and learn.
Read our paper here

The economic burden incurred by families caring for a young child with developmental disability in Uganda

Every year, millions of children worldwide are at risk of developmental difficulties and disabilities, particularly in resource-constrained countries. We estimated the financial burden faced by families caring for a young child with developmental disability in Uganda. The findings were alarming, with families spending on average $949 annually on illness-related costs, including seeking care and loss of employment income. This exceeded the national average household expenditure, and the cost of illness for all households was over 100% of the national GDP per capita. Caregivers faced economic consequences and resorted to wealth-reducing coping strategies in 84% of cases. Families caring for children with severe impairment incurred even higher costs, with paternal abandonment also being common, resulting in financial loss for affected mothers. Caring for a young child with developmental disability was unaffordable for all households. Early care and support programs have the potential to alleviate these financial burdens, but national efforts are urgently needed to address this catastrophic health expenditure. Together, we can make a difference for these marginalised children and their families.

Read more in PLOS Global Public Health

UNICEF and global leadership for disability inclusion in early childhood

We applaud UNICEF’s Disability Inclusion Policy and Strategy 2022-30. This groundbreaking report outlines bold commitments for inclusive education and global health. It’s crucial to utilize existing evidence and lessons from successful programs to accelerate progress. Robust funding, realistic benchmarks, and tangible benefits are essential. Inclusion is about transforming systems, not tokenism. We urge UNICEF to swiftly implement SDG 4.2 to realize the global commitment to inclusive education by 2030. Together, we can make a difference for children with disabilities worldwide!

Read more here from the Lancet

Global leadership is needed to optimize early childhood development for children with disabilities

UNICEF and other international bodies must prioritise development and education for children with disabilities to achieve the United Nations Sustainable Development Goals. With over 53 million children under five years old worldwide facing developmental disabilities, it’s time to take action. Despite slow progress and limited funding, it’s not too late to make a difference. Let’s break barriers, ensure inclusive education, and give every child with a disability the opportunity to thrive. Join us in this global mission for a brighter future!

Read our commentary published in Nature Medicine

Global prevalence of developmental disabilities in children and adolescents: a systematic umbrella review.

The United Nations’ Sustainable Development Goals (SDGs) have put a spotlight on disability-inclusive education, leading to increased interest in understanding the prevalence of developmental disabilities among children worldwide. In this comprehensive umbrella review, we searched the literature for systematic reviews and meta-analyses published between 2015 and 2022. Out of thousands of articles, we selected 10 studies that reported prevalence estimates for various developmental disabilities including ADHD, autism, cerebral palsy, and more. However, limitations in geographical coverage and methodology heterogeneity in the studies prevent us from drawing definitive conclusions about the global and regional prevalence of these disabilities. Nonetheless, our findings highlight the need for population-based data and standardized approaches to inform global health policies and interventions. It’s time to shed light on developmental disabilities and pave the way for inclusive care for all children and adolescents.

Read more here

Assessment of the feasibility of Juntos: A support programme for families of children affected by Congenital Zika Syndrome

When the Zika epidemic struck in 2015-16, thousands of children were born with congenital Zika syndrome (CZS), leaving parents with gaps in health information and support. In response, we developed and piloted Juntos – a participatory support program for caregivers of children with CZS in Brazil. Using a feasibility framework, we assessed the program’s potential across various areas including acceptability, demand, implementation, practicality, adaptation, and limited efficacy. The results were promising, with high acceptability and demand, demonstrated implementation and practicality, and potential for adaptability. Caregivers reported improved quality of life and family relationships, showing limited efficacy. However, further research is needed to explore scalability, integration, expansion, and efficacy. Juntos is empowering caregivers and bridging gaps in Zika-related care, but more studies are warranted to determine its effectiveness in the long run.

Read our article here

Building a Bright Future: Integrating Rehabilitation into Early Childhood Development

The power of rehabilitation in shaping the lives of children with developmental disabilities cannot be overstated. This commentary delves into the global action plan for rehabilitation by the World Health Organisation (WHO) and its alignment with the United Nations’ Sustainable Development Goal for inclusive education. While the importance of a life-course approach to rehabilitation is acknowledged, the critical role of rehabilitation in early childhood development (ECD) for children with disabilities, particularly in low- and middle-income countries, is not adequately addressed. Early intervention through routine screening, assessment, and surveillance from birth is crucial to optimize school readiness for children with developmental disabilities. We must nurture the culture and practice of rehabilitation from infancy, ensuring that children with disabilities have access to effective rehabilitation services over their life course. Global investment in promoting and supporting rehabilitation services within health systems and community settings is essential to achieve the sustainable development goals for children with disabilities. Let’s build a bright future by integrating rehabilitation into early childhood development and unlocking the potential of every child.

Read our article here

Cerebral palsy and developmental intellectual disability in children younger than 5 years

Children with developmental disabilities, such as cerebral palsy and intellectual disability, face significant challenges in accessing education and achieving optimal educational outcomes. This global study reveals that millions of children under 5 years old are estimated to have cerebral palsy or intellectual disability, with the majority residing in low-income and middle-income countries. These disabilities account for a significant proportion of years lived with disability (YLDs) worldwide. The African Region has the highest prevalence of cerebral palsy, while South-East Asia Region has the highest prevalence of intellectual disability. It’s time for universal early detection and support services to prioritize inclusive education for these children, in alignment with the United Nations’ Sustainable Development Goals. Let’s unlock the potential of every child and ensure they have the opportunity to thrive in school and beyond.

Read the article here

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