Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • View all journals
  • My Account Login
  • Explore content
  • About the journal
  • Publish with us
  • Sign up for alerts
  • Open access
  • Published: 12 October 2023

Prevalence and trends of developmental disabilities among US children and adolescents aged 3 to 17 years, 2018–2021

  • Qian Li 1   na1 ,
  • Yanmei Li 1   na1 ,
  • Juan Zheng 2   na1 ,
  • Xiaofang Yan 1 ,
  • Jitian Huang 1 ,
  • Yingxia Xu 1 ,
  • Xia Zeng 1 ,
  • Tianran Shen 3 ,
  • Xiaohui Xing 1 ,
  • Qingsong Chen 4 &
  • Wenhan Yang 1  

Scientific Reports volume  13 , Article number:  17254 ( 2023 ) Cite this article

2716 Accesses

11 Altmetric

Metrics details

  • Neuroscience

Developmental disabilities prevalence seem to be high in countries around the world. It’s worth understanding the most recent prevalence and trends of developmental disabilities. The objective of this study is to examine the prevalence and trends of developmental disabilities of US children and adolescents. A total of 26,422 individuals aged 3–17 years were included. Annual data were examined from the National Health Interview Survey (2018–2021). Weighted prevalence for each of the selected developmental disabilities were calculated. The prevalence of any developmental disabilities in individuals was 16.65% (95% CI 16.03–17.26%), prevalence of attention deficit/hyperactivity disorder (ADHD), learning disability (LD), autism spectrum disorder (ASD), intellectual disability (ID), and other developmental delay were 9.57% (95% CI 9.09–10.06%), 7.45% (95% CI 7.00–7.89%), 2.94% (95% CI 2.67–3.21%), 1.72% (95% CI 1.51–1.93%), and 5.24% (95% CI 4.89–5.59%), respectively. Significant increases were observed for other developmental delay (4.02–6.05%) and co-occurring LD & ID (1.03–1.82%). Findings form this study highlight a high prevalence of any developmental disabilities, although no significant increase was observed. The prevalence of other developmental delay and co-occurring LD & ID were significantly increased. Further investigation is warranted to assess potentially modifiable risk factors and causes of developmental disabilities.

Introduction

As a group of lifelong disorders, developmental disabilities are characterized by difficulties in one or more areas, including physical, learning, language, or behavior 1 , 2 , 3 . Examples of more common developmental disabilities include, attention deficit/hyperactivity disorder (ADHD), learning disability (LD), autism spectrum disorder (ASD), intellectual disability (ID), and other developmental delay 4 . Compared to children without developmental disabilities, children with developmental disabilities are at greater risk of suboptimal health, educational attainment and well-being 4 .

Developmental disabilities have profound impacts on the quality of life and social integration of individuals 4 . ADHD is characterized by inattention, hyperactivity, and impulsivity. Individuals with ADHD face an increased risk of adverse outcomes 5 , 6 , 7 . These outcomes include challenges such as decreased educational attainment, higher unemployment rates, increased driving accidents, and elevated risk for other mental health conditions 5 , 6 , 7 . LD primarily refers to difficulties in acquiring academic skills, such as reading or mathematics, which may hinder a child's educational progress 8 . ASD involves challenges in social interaction, communication, and repetitive behaviors, which can lead to differences in forming relationships and navigating everyday activities and social situation 9 . ID is characterized by limitations in intellectual functioning and adaptive behavior, affecting an individual's ability to independently handle daily tasks 10 . Other developmental delay encompasses a range of issues not falling into the above categories but still requiring specialized attention and support 1 , 2 , 3 .

It is important to note that, the number of children with developmental disabilities has been increasing all around the world in the past decades 4 . The United States is one of the major countries in the world with significant increasing trends in the prevalence of most developmental disabilities 4 . This can be attributed to various factors, such as improved awareness and identification of developmental disabilities, increased access to healthcare services, and changes in diagnostic criteria 1 , 4 . Over the past decade, the prevalence has steadily increased, with 17.76% in 2015–2017 compared with 16.22% in 2009–2011 1 . From 1997 to 2006, the average annual increase in the percentage of children diagnosed with ADHD was 3% 11 . Another study also showed that the prevalence of diagnosed ADHD among children and adolescents in the US increased from 6.1% in 1997–1998 to 10.2% in 2015–2016 5 . There was no significant annual average change was found in the percentage of children diagnosed with LD from 1997 to 2006 11 . In 2007, 5.5% of all students in public schools were identified as having LD 8 . The results of a recent study suggest that the prevalence of ASD among individuals aged 3 to 17 years in the US, based on data from the 2019 and 2020 survey years of NHIS, is approximately 3.14% 12 . In addition, an analysis of the National Health Interview Survey (NHIS) from 2014 to 2016 reported 23.21%, 3.64%, and 27.45% increase in the prevalence of ASD, ID, and other developmental delay, respectively 13 .

Understanding the prevalence and trends of these developmental disabilities is crucial. Firstly, the adverse impacts of these conditions on individuals and their families are profound and enduring 1 , 5 , 6 , 7 , 8 , 9 , 10 . They can lead to lower educational attainment, decreased quality of life, and increased healthcare needs 1 , 5 , 6 , 7 , 8 , 9 , 10 . Secondly, tracking the prevalence of these disabilities over time provides critical insights into potential factors such as changes in diagnostic criteria, awareness, or environmental influences 1 , 2 .

According to previous studies, it was common for children to be diagnosed with two or more of developmental disabilities 9 , 11 , 14 . This situation can complicate diagnosis and treatment, further impacting their quality of life and leading to economic burdens 9 , 11 , 14 . ADHD, LD, ASD, and ID are common co-occurring developmental disabilities 9 , 11 , 14 . For instance, approximately 30% to 80% of children with ASD also meet criteria for ID, and the estimated prevalence of co-occurring ASD and ADHD in children ranges from 20 to 50% 14 . The massive range may be due to studies conducted in various regions, cultures, and communities that may include individuals with varying degrees of developmental disabilities 9 , 11 , 14 . However, at present, studies on co-occurring developmental disabilities are still lacking. Current research predominantly focuses on a single condition, however, for individuals concurrently affected by multiple conditions, better comprehension of the risk factors leading to the co-occurrence of these conditions is needed. Understanding these risk factors can assist in better prevention and intervention strategies for co-occurring developmental disabilities.

Information on the prevalence and trends of developmental disabilities in recent years can provide important information for future research, clinical care, and decision-making about developmental disabilities. However, epidemiological data on developmental disabilities to guide comprehensive health policy engagements at the regional or national levels are lacking 4 . Timely data are not only critical to capturing changes in the prevalence of developmental disabilities, but also provide an opportunity to address challenges in estimating prevalence. The primary objective of this report is to describe the prevalence and the trends of developmental disabilities in individuals aged 3–17 years in the US using timely, nationally representative data from NHIS. As a secondary objective, this study also examined the prevalence of all possible combinations of two or more co-occurring ADHD, LD, ASD, and ID. These combinations include co-occurring ADHD & LD, co-occurring LD & ASD, co-occurring LD & ID, co-occurring ADHD & ASD, co-occurring ASD & ID, co-occurring ADHD & ID, co-occurring ADHD & LD & ASD, co-occurring LD & ASD & ID, co-occurring ADHD & LD & ID, co-occurring ADHD & ASD & ID, and co-occurring ADHD & LD & ASD & ID.

Data source

Data from the 2018–2021 NHIS, a nationally representative cross-sectional survey of the civilian non-institutionalized U.S. population, were used for this analysis. As a leading national health survey in the US, NHIS is conducted annually by the National Center for Health Statistics at the Centers for Disease Control and Prevention 5 . The NHIS is conducted using computer-assisted personal interviewing 5 . Face-to-face interviews are conducted in respondents’ homes, but follow-ups to complete interviews may be conducted over the telephone 6 . According to the data collection procedures of NHIS ( https://www.cdc.gov/nchs/nhis/about_nhis.htm ), a telephone interview may be conducted when the respondent requests a telephone interview or when road conditions or travel distances would make it difficult to schedule a personal visit before the required completion date. Information about the sample child was collected by interviewing a parent or guardian, who was knowledgeable about the child’s health 5 . For each interviewed family in the household, only one sample child, if any, was randomly selected by a computer program 5 . Sample children aged 3–17 years were included in this analysis (total unweighted sample size: n = 26,422). The total household response rate ranged from 50.7% to 64.2% and the conditional response rate for the sample child ranged from 86.9% to 93.5%, between 2018 and 2021.

Selected demographic and socioeconomic characteristics were provided by NHIS, including child’s age, sex, race/ethnicity, highest educational level of family members, family income to poverty ratio, and geographic region, collected during the interview using a standardized questionnaire. Race and Hispanic ethnicity (Hispanic, non-Hispanic White, non-Hispanic Black, and Other) were self-reported and classified based on the 1997 Office of Management and Budget Standards 5 . Income levels (family income to poverty ratio < 1.00, 1.00 to 1.99, 2.00 to 3.99, and ≥ 4.00) were classified according to the ratio of family income to federal poverty level 5 . In order to better understand the characteristics, needs, and developmental trends of children and adolescents of different age groups, we divided age into 3–5 years old (preschools), 6–11 years old (children), and 12–17 years old (adolescents). Following previous research, we categorized the highest educational level of family members into Less than high school, High school, and College or higher, in order to have a clear and concise understanding and analysis of the educational background of family members 12 . The classification of geographic region was determined by NHIS and divided into Northeast, Midwest, South, and West.

Developmental disabilities examined in this report were ADHD, LD, ASD, ID, and other developmental delay. ADHD, LD, ASD, ID, and other developmental delay were defined according to affirmative responses to the questions listed in Table S of Supplement respectively. In this study, parents were asked whether a doctor or health professional had ever informed them that their child had any of these conditions (ASD, ADHD, LD, ID, and other developmental delay), and children whose parents responded affirmatively to any of these conditions were defined as cases. A child was categorized as having “any developmental disability” if they presented with one or more of these aforementioned conditions at any point during their lifetime.

Statistical analysis

We estimated the prevalence estimates using survey weights, strata, and primary sampling units created by the National Center for Health Statistics to account for unequal probabilities of selection, oversampling, and nonresponse in the survey.

Differences between percentages of developmental disabilities by selected demographic and socioeconomic characteristics were evaluated using chi-squares. Given that prevalence may vary over time, we tested trends in the prevalence over time using a weighted logistic regression model, which included the survey year as a continuous variable and adjusted for age, sex, race/ethnicity, highest educational level of family members, family income, and geographic region. Prevalence and trends of co-occurring two or more of ADHD, LD, ASD, and ID were also examined. All statistical analyses were performed using SAS, version 9.4 (SAS Institute, Inc.). Two-sided P  < 0.05 was considered statistically significant.

All methods were carried out in accordance with the Declaration of Helsinki. NHIS was approved by the National Center for Health Statistics Research Ethics Review Board. All respondents provided informed verbal consent prior to participation. The Guangdong Pharmaceutical University Academic Review Board determined the present study was exempt from approval because of the use of de-identified data.

Ethical approval

The NHIS protocols were approved by the National Center for Health Statistics research ethics review board. Written informed consent was obtained for all participants. The Guangdong Pharmaceutical University Academic Review Board determined the present study was exempt from approval because of the use of deidentified data.

Among the total of 26,422 individuals aged 3–17 years included in the study, comprising 13,612 boys (51.52%) and 12,810 girls (48.48%), the overall prevalence of any developmental disability reported by parents was 16.65% (95% CI 16.03–17.26%) from 2018 to 2021. Specifically, the prevalence was 16.19% (95% CI 15.04–17.35%) in 2018, 15.42% (95% CI 14.45–16.40%) in 2019, 17.91% (95% CI 16.54–19.28%) in 2020, and 17.07% (95% CI 16.05–18.09%) in 2021. There was no significant trend observed over time ( P for trend = 0.22). From 2018 to 2021, significant variations in the prevalence of any developmental disability were noted across different age groups, sexes, races/ethnicities, family income-to-poverty ratios, and geographic regions (Table  1 ).

The weighted prevalence of ADHD, LD, ASD, ID, and other developmental delay were 9.57% (95% CI 9.09-10.06%), 7.45% (95% 7.00-7.89%), 2.94% (95% CI 2.67–3.21%), 1.72% (95% CI 1.51–1.93%), and 5.24% (95% CI 4.89–5.59%), respectively (Table  2 ).

Other developmental delay exhibited the only statistically significant increase in prevalence from 2018 to 2021 (4.02%, 95% CI 3.46–4.58%; 6.05%, 95% CI 5.36–6.74%; p  < 0.05, respectively) (Fig.  1 ). Moreover, an analysis of the co-occurring developmental disabilities among individuals aged 3 to 17 in the United States from 2018 to 2021 revealed significant overall increases in the prevalence of co-occurring LD & ID (1.03–1.82%, P for trend < 0.05) (Fig.  2 ). There were not significant increases observed for ADHD, LD, ASD, ID, co-occurring ADHD & LD, co-occurring LD & ASD, co-occurring ADHD & ASD, co-occurring ASD & ID, co-occurring ADHD & ID, co-occurring ADHD & LD & ASD, co-occurring LD & ASD & ID, co-occurring ADHD & LD & ID, co-occurring ADHD & ASD & ID, and co-occurring ADHD & LD & ASD & ID, all P for trend > 0.05 (Figs.  1 , 2 and 3 ).

figure 1

Trends in the Prevalence of Developmental Disabilities in US Children and Adolescents aged 3–17 years, 2018–2021. ADHD attention-deficit/hyperactivity disorder; LD learning disability; ASD autism spectrum disorder; ID intellectual disability.

figure 2

Prevalence of children and adolescents aged 3–17 years with two of selected developmental disabilities, by year: US, 2018–2021. ADHD & LD: co-occurring ADHD & LD; LD & ASD: co-occurring LD & ASD; LD & ID: co-occurring LD & ID; ADHD & ASD: co-occurring ADHD & ASD; ASD & ID: co-occurring ASD & ID; ADHD & ID: co-occurring ADHD & ID.

figure 3

Prevalence of children and adolescents aged 3–17 years with three or more of selected developmental disabilities, by year: US, 2018–2021. The vertical label refers from left to right: co-occurring ADHD & LD & ASD, co-occurring LD & ASD & ID, co-occurring ADHD & LD & ID, co-occurring ADHD & ASD & ID, and co-occurring ADHD & LD & ASD & ID.

Data from the 2018–2021 survey years of NHIS indicated that the prevalence of ADHD, LD, ASD, or ID were generally higher among the 12–17 years age group, boys, non-Hispanic white individuals or non-Hispanic black individuals, and individuals with lower family income levels. Additionally, the prevalence of other developmental delay was higher among the 3–5 years age group, boys, non-Hispanic black individuals, and individuals with lower family income levels. (see Supplementary Fig. S1 – S5 online).

From 2018 to 2021, the prevalence of ADHD ranged from 11.95% to 13.64% in individuals aged 12 to 17 years, 11.68–12.92% in boys, from 10.26 to 11.90% in non-Hispanic white individuals, and from 11.19 to 14.92% in family income-to-poverty ratio less than 1.00 (see Supplementary Fig.  S1 online). The prevalence of LD ranged from 8.11 to 10.61% in individuals aged 12 to 17 years, 11.68–12.92% in boys, from 8.59 to 9.80% in non-Hispanic white individuals, and from 11.19 to 14.92% in family income-to-poverty ratio less than 1.00 (see Supplementary Fig.  S2 online). The prevalence of ASD ranged from 2.41 to 3.88% in individuals aged 12 to 17 years, 3.54 to 4.98% in boys, from 2.08 to 5.22% in non-Hispanic black individuals, and from 3.21 to 6.21% in family income-to-poverty ratio less than 1.00 (see Supplementary Fig.  S3 online). As for ID, the prevalence ranged from 1.49 to 2.51% in children aged 12 to 17 years, from 1.70 to 2.76% in boys, from 1.95 to 4.29% in non-Hispanic black individuals, and from 2.20 to 2.38% in family income-to-poverty ratio less than 1.00 (see Supplementary Fig.  S4 online). From 2018 to 2021, significant increases in prevalence of other developmental delay were observed for children aged 6 to 11 years (3.94–6.38%), adolescents aged 12 to 17 years (3.87–5.36%), boys (5.18–7.63%), and non-Hispanic black individuals (4.05–7.70%), in addition, the prevalence of other developmental delay ranged from 5.11 to 7.45% among individuals with a family income-to-poverty ratio less than 1.00 (see Supplementary Fig.  S5 online).

This study provided the parent-reported prevalence estimates of ADHD, LD, ID, ASD, and other developmental delay in children and adolescents aged 3–17 years. The overall prevalence of any developmental disability did not increase significantly during this period. Approximately one in six children and adolescents aged 3–17 years in the US were reported by their parents to have any developmental disability during the period of 2018–2021. Additionally, the latest data from NHIS indicated that prevalence estimates of ADHD, LD, ASD, and ID were mostly similar to those reported in previous years. Moreover, we also found that the prevalence of other developmental delay and co-occurring LD & ID were significantly increased.

From the results, we observed that the prevalence of developmental disabilities in 2021 was lower than that in 2020. The COVID-19 pandemic may have indirectly influenced the prevalence of developmental disabilities by affecting people's lifestyles, healthcare access, and social support systems 15 . For instance, since the onset of the pandemic, disruptions in services for children with developmental disabilities in the United States and a transition to remote healthcare have been widespread 15 . While most developmental disabilities (ADHD, LD, ASD, and ID) did not show an increasing trend during the period of this study from 2018 to 2021, the prevalence of developmental disabilities appeared to be higher compared to findings from previous research. It should be noted that changes in diagnostic criteria may have an impact on the reported overall prevalence rates provided in this study. DSM-5, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, was implemented in 2013, replacing DSM-IV 16 , 17 . For developmental disabilities, DSM-5 introduced significant changes to the diagnostic criteria, which could affect the prevalence rates 16 , 17 . For instance, DSM-5 revised the age range and subtype diagnosis for ADHD, merged the diagnoses of ASD into a unified concept, and made adjustments to the classification and assessment of LD and ID 16 , 17 . These changes may have an impact on the prevalence rates, and further research and data are needed to evaluate the specific effects.

Attention-deficit/hyperactivity disorder

The overall weighted prevalence of ADHD in 2018–2021 was 9.57% and there was not a significant increase in the prevalence of ADHD during this period. The prevalence in this study was higher than the community prevalence globally (ranged from 2 to 7%) from a systematic review in 2018 18 , very similar to the results from 2015–2017 (9.54%) to 2017–2018 (9.6%) of NHIS 1 , 6 , and slightly lower than the prevalence reported from 2016 to 2019 (9.8%) of National Survey of Children’s Health (NSCH) 6 . In addition, this study found that the prevalence of co-occurring ADHD & LD was similar to the 3.7% prevalence of both conditions in children and adolescents aged 6 to 17 reported by the NHIS from 2004 to 2006 11 . The annual prevalence of ADHD has not changed much in recent years. Notably, the estimated prevalence of ADHD among U.S. individuals in this study was higher than the prevalence estimated in 1997–1998 (6.1%) 19 . In theory, the increased prevalence may be due to increased awareness of ADHD and its different manifestations 19 .

Given that ADHD has a high prevalence that persists into adult life, individuals with this condition face an increased risk of adverse outcomes 6 , 7 . Thus timely identification and treatment of children and adolescents with ADHD provides an opportunity to improve long-term outcomes. However, as a neurodevelopmental disorder, ADHD has a highly complex etiology. Both genetic risk factors and environmental risk factors are believed to contribute to the development of ADHD 5 . The contributions of these risk factors to the etiologic source of ADHD, both separately and jointly, warrant further investigation.

Moreover, we found that the prevalence of co-occurring ADHD & LD was higher than co-occurring ADHD & other developmental disabilities. It’s not uncommon for individuals with ADHD to also experience co-occurring LD, ASD, or ID 11 , 14 , 20 . It is worth noting that the co-occurring ADHD & LD can introduce additional complexity to the educational setting 11 . The presence of ADHD, ASD, and ID can complicate diagnostic and intervention efforts because some symptoms overlap, for example, difficulties with attention and impulsivity are all common symptoms of ADHD, ASD, and ID 14 . This further emphasizes the complexity of developmental disabilities. Further investigation is warranted to assess potentially modifiable risk factors, and provide adequate resources for treatment of affected individuals in the future.

Learning disability

This study did not find a significant increase in the prevalence of LD among children and adolescents in the US, nor did previous study observe a significant increase in LD prevalence 1 . The observed prevalence of LD was similar to the prevalence in 2015–2018 (7.7%) and in 2015–2017 (7.86%) from NHIS 1 , 2 . These data indicate that LD is a common chronic condition among US children, affecting about 8 in 100 overall. LD is difficult to diagnose and older children may have higher prevalence rate due to longer exposure to the possibility of evaluation and diagnosis 11 . Notably, the Response to Intervention (RTI) framework is used in US schools to provide early interventions for students' academic and behavioral success 21 , 22 . By intervening early and offering various levels of support, the RTI framework can potentially result in improved academic outcomes for many students 21 , 22 . Thus, the RTI framework could have implications for the diagnosis of LD.

This study found that the prevalence of co-occurring LD & ID showed a significant increase trend. Although LD and ID are clinically regarded as distinct conditions, both LD and ID can involve difficulties with learning and academic achievement 8 , 9 , 11 , 14 . This could imply deeper associations, such as shared genetic factors, overlapping neurodevelopmental pathways, and more. Future research will need to delve deeper into this issue, including exploring potential influencing factors, examining relationships between variables, and assessing how this trend might impact clinical practices and intervention strategies. Moreover, LD may prevent children from reaching their full potential and cause educational, social, and economic burdens 8 . The consensus among experts and scholars is that children who exhibit signs of LD should be identified and intervened as early as possible, because the beneficial effects of early identification and intervention are clear 8 .

Autism spectrum disorder

The parent-reported lifetime prevalence from this study was higher than the reported results in 2014–2016 (2.47%) and in 2017–2018 (2.4%) 6 , 23 . The observed prevalence was also higher than the prevalence in 2018 (2.30%) from the Autism and Developmental Disabilities Monitoring Network (ADDM), which assesses the prevalence of currently diagnosed children with autism 24 . Additionally, the observed prevalence was higher than the prevalence in 2016 (2.50%) from NSCH 25 , slightly lower than the prevalence in 2016–2019 (3.1%) from NSCH and the prevalence in 2019–2020 (3.14%) from NHIS 6 , 13 . A review in 2012 commissioned by WHO estimated the global prevalence of ASD at about 1% 26 , and systematic review analysis of the global prevalence of ASD from 2008 to 2022 showed that the prevalence of ASD in Asia, America, Europe, Africa and Australia was 0.4%, 1%, 0.5%, 1%, and 1.7% respectively 27 . Additionally, this study also found that among the co-occurring developmental disabilities investigated in this study, the prevalence of co-occurring LD & ASD, co-occurring ADHD & LD & ASD, and co-occurring LD & ASD & ID were high; and it has been pointed out that the rate of co-occurring ASD and ID is high 14 .

Estimates of prevalence vary from study to study in different countries 27 . Variations in prevalence stem from differences in diagnostic standards and practices, cultural influences, healthcare access, study designs and protocols, and awareness levels 27 . ASD primarily impacts social communication and behavior habits, and may affect the typical development of children and adolescents 27 , 28 . Considering ASD is a lifetime diagnosis, parents of children with ASD face addition challenges in ensuring their child is provided with treatment, services, and necessary resources 26 , 27 , 28 . There are also varying degrees of ASD and some children with ASD may not be able to live independently which places additional strain on caregivers, healthcare systems, and the economy 26 , 27 , 28 . Study suggested that total costs attributable to ASD will rise to more than 450 billion dollars by 2025 28 . It is common for ASD to co-occur with other developmental disabilities. ASD may be caused by the interaction of genetic and environmental factors, that is, genetic abnormalities cause a particular individual's genetic susceptibility, and adverse environmental factors before conception, during pregnancy, or during childbirth are the trigger factors for the condition 27 , 29 . The contribution of these non-genetic and genetic risk factors to the etiological source of ASD deserves further investigation.

Intellectual disability

The results of this study indicated no significant increase in the prevalence of individuals diagnosed with ID from 2018 to 2021, but the overall prevalence was higher than in previous studies. In this study, the overall prevalence of ID was higher than that of the (ADDM) among eight-year-old children in 2014 (1.2%) and the reported prevalence in 2015–2017 (1.17%) from NHIS 1 , 10 . In 2019, systematic review reported the prevalence ranged from 1.10 to 1.34% in children and adolescents with ID in 2010 or later, a range smaller than the prevalence reported by this study (1.33–2.19%) 30 . It is worth noting that past increases in the prevalence of ID appear to be related to changes in the terminology of survey questions in the NHIS. From 1997 to 2010, when the survey asked about “mental retardation”, the NHIS has updated the term to “intellectual disability”, also known as “mental retardation” since 2011 30 . The prevalence of ID was relatively stable (7.1 or 7.8 per 1000) during the 1997–2010 study period, but increased by 72% in 2011–2013 1 , 30 . Although this study used the same terminology, the prevalence of ID described in this report was higher than that described in previous reports using NHIS data 1 , 2 , 30 . As a severe lifelong disability, the most common causes of ID are birth defects and genetic conditions. In addition, the risk of ID is increased by older maternal age at childbirth, lower maternal education, lower socioeconomic status and so on 10 . Future studies could further explore the interactions among different factors to gain a more comprehensive insight into the mechanisms and preventative measures associated with intellectual disabilities.

Other developmental delay

In this study, other developmental delay showed a statistically significant increase over time, contrary to a statistically significant decrease in 2009 to 2017 reported by Zablotsky, et al. 1 . The possible reason for the reduced prevalence seen in the study by Zablotsky and colleagues was that children have increasingly been diagnosed with another specified condition on the survey, so the parents have become less likely to select this category 1 . Notably, the questionnaire of NHIS underwent a significant redesign in 2019 to reduce the burden on respondents and align its content with other federal health surveys 30 . With these changes, some conditions will no longer be included in NHIS, such as cerebral palsy, seizures and stuttering or stammering, which could result in higher prevalence of other developmental delay in 2019 to 2021 (5.07–6.05%) than in 2015–2017(4.06%) and 2018 (4.02%) 1 , 30 . The prevalence of cerebral palsy, seizures and stuttering or stammering had not increased significantly in the decades before the 2019 questionnaire redesign 1 , 30 . But a true increase of other developmental delay in the study years assessed, which did not include cerebral palsy, seizures, and stuttering or stammering, cannot be ruled out. Supporting this notion, evidence revealed that the prevalence of other developmental delays in the NHIS survey increased from 3.57% in 2014 to 4.55% in 2016 13 . According to the NSCH report in 2016, less than a third of children aged 9 to 35 months had received standardized parent-completed developmental screening from healthcare professionals in the past year, and only one in five of those children received both screening and surveillance 31 . Extensive medical and developmental assessments are needed to detect developmental delays at an early age, and development outcomes for all children can be greatly improved through systematic screening and development surveillance for children.

Co-occurring developmental disabilities

This survey showed that co-occurring LD & ID showed significant increase over time. In addition, this study also found that among the co-occurring developmental disabilities investigated in this study, the prevalence of co-occurring ADHD & LD, co-occurring LD & ASD, co-occurring ADHD & LD & ASD, co-occurring ADHD & LD & ID, and co-occurring LD & ASD & ID were high in children and adolescents. A whole population study from Scotland’s Census 2011 census reported that 21.7% of people with ID also had ASD and 18.0% of those with ASD also had an ID 32 . Approximately 4.7% of US children and adolescents aged 6 to 17 have ADHD without LD, 4.9% have LD without ADHD, and 3.7% have both conditions in NHIS 2004–2006 11 .

The increase in co-occurrence of LD and ID may be due to shared risk factors, cognitive similarities, challenges in early identification, and ambiguous diagnostic criteria 8 , 9 , 11 , 14 . Despite this overlap, it’s important to differentiate between LD and ID as their intervention needs vary 8 , 9 , 11 , 14 . Notably, one of the developmental disabilities may exacerbate or mitigate the typical symptoms of the other, which may complicate differential diagnosis or delay diagnosis and thus miss opportunity for treatment 9 , 14 , 32 . In addition, they may be associated in nature 33 , 34 , and future research should focus not only on exploring risk factors and etiology of co-occurring developmental disabilities, but also on perfecting diagnostic criteria for highly co-occurring conditions.

Demographic and socioeconomic characteristics

There was significant difference across age, sex, race/ethnicity, family income levels, and geographic region for percentage among children and adolescents with any developmental disabilities in this study. Similar to previous surveys, the percentage of developmental disabilities did vary significantly by age, sex, race/ethnicity, or family income level 1 , 4 , 6 , 13 , 35 . Children and adolescents with a higher prevalence of any developmental disabilities were observed to be older (12–17 years old), boys, non-Hispanic, less educational level of family members, and lower family income to poverty ratio. These may be due to the fact that younger children are less likely to be screened or diagnosed 11 , 31 , biological or sex-specific manifestations 35 , 36 , and black individuals have improved access to health care in recent years 37 . In addition, children living in poverty experience adverse early experiences, such as inadequate stimulation or life stress, with exposure to multiple risks that affect brain development 38 . The brain develops rapidly in early life, and early childhood is a critical period for a child's cognitive, language, social, emotional and motor development 38 . Impaired brain development may lead to a higher susceptibility to developmental disabilities 38 . Children living in poverty have poorer grades in school or lower educational attainment, which ultimately lead to lower wages and income in adulthood 39 .

Strengths and limitations

Our study has several notable strengths. Firstly, it benefits from a nationally representative sample derived from the US population, therefore enhancing the generalizability of our findings to a broader population. Secondly, our study has a large sample size and encompasses a diverse population with varying racial and ethnic backgrounds. This diversity allows us to examine disparities in the prevalence of developmental disabilities across different population characteristics.

However, there are also limitations. Initially diagnoses for all conditions were reported by parents or guardians, which may be subject to misreporting and recall bias, especially among parents of older children. Moreover, because of the cross-sectional design of the NHIS, direction of effects or inferences about causality cannot be made. Additionally, due to changes in the 2019 NHIS redesign, some conditions were removed, such as cerebral palsy, seizures and stuttering or stammering, and the overall prevalence of developmental disabilities may be impacted. Finally, the persistence of developmental disabilities varies depending on the conditions 1 . As parents reported lifelong diagnoses, some of the children included in the current analysis might no longer have diagnosable developmental disabilities.

Conclusions

This study presents a comprehensive analysis of the prevalence and characteristics of children and adolescents who had ever been diagnosed with developmental disabilities, as reported by their parents, during the period from 2018 to 2021. We did not find an upward trend in the percentage of any developmental disability during this period, but given the high prevalence of developmental disabilities, it remains essential that we need to continue to monitor prevalence to understand potentially modifiable environmental risk factors and provide adequate resources for future diagnosis and treatment.

Data availability

The original contributions presented in the study are publicly available. The datasets analyzed during current study are available at NHIS online website: https://www.cdc.gov/nchs/nhis/index.htm .

Zablotsky, B. et al. Prevalence and trends of developmental disabilities among children in the United States: 2009–2017. Pediatrics https://doi.org/10.1542/peds.2019-0811 (2019).

Article   PubMed   Google Scholar  

Zablotsky, B. & Black, L. I. Prevalence of children aged 3–17 years with developmental disabilities, by urbanicity: United States, 2015–2018. Natl. Health Stat. Rep. 1–7 (2020).

Zablotsky, B., Black, L. I., Maenner, M. J., Schieve, L. A. & Blumberg, S. J. Estimated prevalence of autism and other developmental disabilities following questionnaire changes in the 2014 national health interview survey. Natl. Health Stat. Rep. 1–20 (2015).

Olusanya, B. O. et al. Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990–2016: A systematic analysis for the global burden of disease study 2016. Lancet Glob. Health 6 , e1100–e1121. https://doi.org/10.1016/s2214-109x(18)30309-7 (2018).

Article   Google Scholar  

Xu, G., Strathearn, L., Liu, B., Yang, B. & Bao, W. Twenty-year Trends in diagnosed attention-deficit/hyperactivity disorder among US children and adolescents, 1997–2016. JAMA Netw. Open 1 , e181471. https://doi.org/10.1001/jamanetworkopen.2018.1471 (2018).

Article   PubMed   PubMed Central   Google Scholar  

Bitsko, R. H. et al. Mental health surveillance among children - United States, 2013–2019. MMWR Suppl. 71 , 1–42. https://doi.org/10.15585/mmwr.su7102a1 (2022).

Article   ADS   PubMed   PubMed Central   Google Scholar  

Chamberlain, S. R., Cortese, S. & Grant, J. E. Screening for adult ADHD using brief rating tools: What can we conclude from a positive screen? Some caveats. Compr. Psychiatry 106 , 152224. https://doi.org/10.1016/j.comppsych.2021.152224 (2021).

Handler, S. M., Fierson, W. M., Section on Ophthalmology and Council on Children with Disabilities. Learning disabilities, dyslexia, and vision. Pediatrics 127 , e818–e856. https://doi.org/10.1542/peds.2010-3670 (2011).

Bougeard, C., Picarel-Blanchot, F., Schmid, R., Campbell, R. & Buitelaar, J. Prevalence of autism spectrum disorder and co-morbidities in children and adolescents: A systematic literature review. Front. Psychiatry 12 , 744709. https://doi.org/10.3389/fpsyt.2021.744709 (2021).

Patrick, M. E. et al. Prevalence of intellectual disability among eight-year-old children from selected communities in the United States, 2014. Disabil. Health J. 14 , 101023. https://doi.org/10.1016/j.dhjo.2020.101023 (2021).

Pastor, P. N. & Reuben, C. A. Diagnosed attention deficit hyperactivity disorder and learning disability: United States, 2004–2006. Vital Health Stat. 10 , 1–14 (2008).

Google Scholar  

Li, Q. et al. Prevalence of autism spectrum disorder among children and adolescents in the United States from 2019 to 2020. JAMA Pediatr. https://doi.org/10.1001/jamapediatrics.2022.1846 (2022).

Zablotsky, B., Black, L. I. & Blumberg, S. J. Estimated prevalence of children with diagnosed developmental disabilities in the United States, 2014–2016. NCHS Data Brief, 1–8 (2017).

McClain, M. B., Hasty Mills, A. M. & Murphy, L. E. Inattention and hyperactivity/impulsivity among children with attention-deficit/hyperactivity-disorder, autism spectrum disorder, and intellectual disability. Res. Dev. Disabil. 70 , 175–184. https://doi.org/10.1016/j.ridd.2017.09.009 (2017).

Zhang, S., Hao, Y., Feng, Y. & Lee, N. Y. COVID-19 pandemic impacts on children with developmental disabilities: Service disruption, transition to telehealth, and child wellbeing. Int. J. Environ. Res. Public Health https://doi.org/10.3390/ijerph19063259 (2022).

Doernberg, E. & Hollander, E. Neurodevelopmental disorders (ASD and ADHD): DSM-5, ICD-10, and ICD-11. CNS Spectr. 21 , 295–299. https://doi.org/10.1017/s1092852916000262 (2016).

Harris, J. C. New classification for neurodevelopmental disorders in DSM-5. Curr. Opin. Psychiatry 27 , 95–97. https://doi.org/10.1097/yco.0000000000000042 (2014).

Sayal, K., Prasad, V., Daley, D., Ford, T. & Coghill, D. ADHD in children and young people: Prevalence, care pathways, and service provision. Lancet Psychiatry 5 , 175–186. https://doi.org/10.1016/s2215-0366(17)30167-0 (2018).

Srichawla, B. S., Telles, C. C., Schweitzer, M. & Darwish, B. Attention deficit hyperactivity disorder and substance use disorder: A narrative review. Cureus 14 , e24068. https://doi.org/10.7759/cureus.24068 (2022).

Thapar, A. & Cooper, M. Attention deficit hyperactivity disorder. Lancet (London, England) 387 , 1240–1250. https://doi.org/10.1016/s0140-6736(15)00238-x (2016).

Milburn, T. F., Lonigan, C. J., Allan, D. M. & Phillips, B. M. Agreement among traditional and RTI-based definitions of reading-related learning disability with preschool children. Learn. Individ. Differ. 55 , 120–129. https://doi.org/10.1016/j.lindif.2017.03.011 (2017).

Cavendish, W. Identification of learning disabilities: Implications of proposed DSM-5 criteria for school-based assessment. J. Learn. Disabil. 46 , 52–57. https://doi.org/10.1177/0022219412464352 (2013).

Xu, G., Strathearn, L., Liu, B. & Bao, W. Prevalence of autism spectrum disorder among US children and adolescents, 2014–2016. Jama 319 , 81–82. https://doi.org/10.1001/jama.2017.17812 (2018).

Maenner, M. J. et al. Prevalence and characteristics of autism spectrum disorder among children aged 8 years - Autism and developmental disabilities monitoring network, 11 sites, United States, 2018. Morb. Mortal. Wkly Rep. Surveill. Summ. 70 , 1–16 (2021).

Kogan, M. D. et al. The prevalence of parent-reported autism spectrum disorder among US children. Pediatrics https://doi.org/10.1542/peds.2017-4161 (2018).

Elsabbagh, M. et al. Global prevalence of autism and other pervasive developmental disorders. Autism Res 5 , 160–179. https://doi.org/10.1002/aur.239 (2012).

Salari, N. et al. The global prevalence of autism spectrum disorder: A comprehensive systematic review and meta-analysis. Ital. J. Pediatr. 48 , 112. https://doi.org/10.1186/s13052-022-01310-w (2022).

Leigh, J. P. & Du, J. Brief report: Forecasting the economic burden of autism in 2015 and 2025 in the United States. J. Autism Dev. Disord. 45 , 4135–4139. https://doi.org/10.1007/s10803-015-2521-7 (2015).

Lyall, K. et al. The changing epidemiology of autism spectrum disorders. Annu. Rev. Public Health 38 , 81–102. https://doi.org/10.1146/annurev-publhealth-031816-044318 (2017).

McGuire, D. O., Tian, L. H., Yeargin-Allsopp, M., Dowling, N. F. & Christensen, D. L. Prevalence of cerebral palsy, intellectual disability, hearing loss, and blindness, National Health Interview Survey, 2009–2016. Disabil. Health J. 12 , 443–451. https://doi.org/10.1016/j.dhjo.2019.01.005 (2019).

Hirai, A. H., Kogan, M. D., Kandasamy, V., Reuland, C. & Bethell, C. Prevalence and variation of developmental screening and surveillance in early childhood. JAMA Pediatr. 172 , 857–866. https://doi.org/10.1001/jamapediatrics.2018.1524 (2018).

Dunn, K., Rydzewska, E., Fleming, M. & Cooper, S. A. Prevalence of mental health conditions, sensory impairments and physical disability in people with co-occurring intellectual disabilities and autism compared with other people: A cross-sectional total population study in Scotland. BMJ Open 10 , e035280. https://doi.org/10.1136/bmjopen-2019-035280 (2020).

Hollingdale, J., Woodhouse, E., Young, S., Fridman, A. & Mandy, W. Autistic spectrum disorder symptoms in children and adolescents with attention-deficit/hyperactivity disorder: a meta-analytical review. Psychol Med 50 , 2240–2253. https://doi.org/10.1017/s0033291719002368 (2020).

Langer, N., Benjamin, C., Becker, B. L. C. & Gaab, N. Comorbidity of reading disabilities and ADHD: Structural and functional brain characteristics. Hum Brain Mapp 40 , 2677–2698. https://doi.org/10.1002/hbm.24552 (2019).

Boyle, C. A. et al. Trends in the prevalence of developmental disabilities in US children, 1997–2008. Pediatrics 127 , 1034–1042. https://doi.org/10.1542/peds.2010-2989 (2011).

deHaas, P. A. Attention styles and peer relationships of hyperactive and normal boys and girls. J Abnorm Child Psychol 14 , 457–467. https://doi.org/10.1007/bf00915438 (1986).

Article   CAS   PubMed   Google Scholar  

Yuan, J., Li, M. & Lu, Z. K. Racial/ethnic disparities in the prevalence and trends of autism spectrum disorder in US children and adolescents. JAMA Netw. Open 4 , e210771. https://doi.org/10.1001/jamanetworkopen.2021.0771 (2021).

Wei, Q. W. et al. High prevalence of developmental delay among children under three years of age in poverty-stricken areas of China. Public Health 129 , 1610–1617. https://doi.org/10.1016/j.puhe.2015.07.036 (2015).

Hair, N. L., Hanson, J. L., Wolfe, B. L. & Pollak, S. D. Association of child poverty, brain development, and academic achievement. JAMA Pediatr. 169 , 822–829. https://doi.org/10.1001/jamapediatrics.2015.1475 (2015).

Download references

Acknowledgements

The authors would like to acknowledge the support from all the team members and all staff of the National Center for Health Statistics.This research was funded by the National Natural Science Foundation of China (Grant No. 81973063).

The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

Author information

These authors contributed equally: Qian Li, Yanmei Li, and Juan Zheng.

Authors and Affiliations

Department of Child and Adolescent Health, School of Public Health, Guangdong Pharmaceutical University, Guangzhou, 510006, Guangdong Province, China

Qian Li, Yanmei Li, Xiaofang Yan, Jitian Huang, Yingxia Xu, Xia Zeng, Xiaohui Xing & Wenhan Yang

Department of Child Health, Maternity and Child Health Hospital of Baiyun District, Guangzhou, 510400, China

Department of Nutrition and Food Health, School of Public Health, Guangdong Pharmaceutical University, Guangzhou, 510006, Guangdong Province, China

Tianran Shen

Department of Occupational and Environmental Health, School of Public Health, Guangdong Pharmaceutical University, Guangzhou, 510006, Guangdong Province, China

Qingsong Chen

You can also search for this author in PubMed   Google Scholar

Contributions

Dr. W.Y. has full access to all of the data in this study and assumes responsibility for study supervision. Concept and design: W.Y., Q.C., Acquisition, analysis, or interpretation of data: W.Y., Q.L., Y.L., J.Z., Drafting of the manuscript: Q.L., Y.L., J.Z., Critical revision of the manuscript for important intellectual content: All authors, Statistical analysis: W.Y., Q.L., Y.L., J.Z.

Corresponding authors

Correspondence to Qingsong Chen or Wenhan Yang .

Ethics declarations

Competing interests.

The authors declare no competing interests.

Additional information

Publisher's note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Supplementary information., rights and permissions.

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ .

Reprints and permissions

About this article

Cite this article.

Li, Q., Li, Y., Zheng, J. et al. Prevalence and trends of developmental disabilities among US children and adolescents aged 3 to 17 years, 2018–2021. Sci Rep 13 , 17254 (2023). https://doi.org/10.1038/s41598-023-44472-1

Download citation

Received : 06 May 2023

Accepted : 09 October 2023

Published : 12 October 2023

DOI : https://doi.org/10.1038/s41598-023-44472-1

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

By submitting a comment you agree to abide by our Terms and Community Guidelines . If you find something abusive or that does not comply with our terms or guidelines please flag it as inappropriate.

Quick links

  • Explore articles by subject
  • Guide to authors
  • Editorial policies

Sign up for the Nature Briefing newsletter — what matters in science, free to your inbox daily.

research in developmental disabilities peer review

REVIEW article

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

\nBolajoko O. Olusanya

  • 1 Centre for Healthy Start Initiative, Lagos, Nigeria
  • 2 International Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine, London, United Kingdom
  • 3 Division of Physiotherapy, Department of Health and Rehabilitation Sciences, Stellenbosch University, Cape Town, South Africa
  • 4 Riverland Academy of Clinical Excellence (RACE), Riverland Mallee Coorong Local Health Network, SA Health | Government of South Australia, Berri, SA, Australia
  • 5 Translational Health Research Institute (THRI), Campbelltown Campus, Western Sydney University, Penrith, NSW, Australia
  • 6 NIMS-Spectrum-Child Development Research Centre, NIMS Medicity, Thiruvananthapuram, Kerala, India
  • 7 Department of Pediatrics, Division of Pediatric Neurology, Fetal-Neonatal Neurology Program, Rainbow Babies and Children's Hospital, University Hospitals Cleveland Medical Center, Cleveland, OH, United States
  • 8 MacDonald Hospital for Women, Case Western Reserve University School of Medicine, University Hospitals Cleveland Medical Center, Cleveland, OH, United States
  • 9 Department of Population Health, London School of Economics, London, United Kingdom
  • 10 Vision and Eye Research Institute, School of Medicine Anglia Ruskin University, Cambridge, United Kingdom

Aim: The provisions of the United Nation's Sustainable Development Goals (SDGs) for disability-inclusive education have stimulated a growing interest in ascertaining the prevalence of children with developmental disabilities globally. We aimed to systematically summarize the prevalence estimates of developmental disabilities in children and adolescents reported in systematic reviews and meta-analyses.

Methods: For this umbrella review we searched PubMed, Scopus, Embase, PsycINFO, and Cochrane Library for systematic reviews published in English between September 2015 and August 2022. Two reviewers independently assessed study eligibility, extracted the data, and assessed risk of bias. We reported the proportion of the global prevalence estimates attributed to country income levels for specific developmental disabilities. Prevalence estimates for the selected disabilities were compared with those reported in the Global Burden of Disease (GBD) Study 2019.

Results: Based on our inclusion criteria, 10 systematic reviews reporting prevalence estimates for attention-deficit/hyperactivity disorder, autism spectrum disorder, cerebral palsy, developmental intellectual disability, epilepsy, hearing loss, vision loss and developmental dyslexia were selected from 3,456 identified articles. Global prevalence estimates were derived from cohorts in high-income countries in all cases except epilepsy and were calculated from nine to 56 countries. Sensory impairments were the most prevalent disabilities (approximately 13%) and cerebral palsy was the least prevalent disability (approximately 0.2–0.3%) based on the eligible reviews. Pooled estimates for geographical regions were available for vision loss and developmental dyslexia. All studies had a moderate to high risk of bias. GBD prevalence estimates were lower for all disabilities except cerebral palsy and intellectual disability.

Conclusion: Available estimates from systematic reviews and meta-analyses do not provide representative evidence on the global and regional prevalence of developmental disabilities among children and adolescents due to limited geographical coverage and substantial heterogeneity in methodology across studies. Population-based data for all regions using other approaches such as reported in the GBD Study are warranted to inform global health policy and intervention.

Introduction

The United Nations' Sustainable Development Goals (SDGs) are widely embraced, especially in low- and middle-income countries (LMICs), as the priority global agenda for improving population health and well-being by 2030 ( 1 ). The disability-inclusive provisions of the SDGs have stimulated a growing interest in children and adolescents (hereinafter reported as “children”) with developmental disabilities globally ( 2 , 3 ). The Convention on the Rights of Persons with Disabilities (CRPD) defines persons with disabilities to include “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” ( 4 ). Developmental disabilities are frequently defined as chronic physical, cognitive, speech or language, psychological, or self-care conditions that typically originate during childhood before the age of 22 years; are likely to continue indefinitely; and require additional coordinated services, support, or other assistance for an extended duration or during a lifetime; and represent a subset of conditions that affect children with special health care needs ( 5 , 6 ). Right from birth, children with developmental disabilities, especially in LMICs experience stigma along with negative attitudes and beliefs that place them at increased risk of neglect, exploitation, and violence, as well as premature death including infanticide ( 2 ). These children also perform significantly poorer than children without disabilities across virtually all indicators of health and educational wellbeing in early childhood ( 2 ).

Up-to-date prevalence estimates are essential to raise awareness and inform policy initiatives, service planning, resource allocation, and research priorities ( 2 ). Evidence from global health databases suggests that about 240 million children globally have developmental disabilities based on parent-reported functional difficulties compared to 290 million children using statistical modeling techniques ( 3 ). Although systematic reviews and meta-analyses are more suited for evaluating the effectiveness of health interventions and accuracy of diagnostic tests from clinical trials ( 7 – 9 ), it is not uncommon to use pooled prevalence estimates from individual primary studies as proxies for the global and regional prevalence of children with developmental disabilities ( 10 – 13 ). However, it is unclear how such prevalence estimates compare with those reported in global health databases from the World Health Organization (WHO), United Nations Children's Fund (UNICEF), the World Bank or the Global Burden of Disease (GBD) Study published by the Institute for Health Metrics and Evaluation (IHME), USA. Umbrella reviews are increasingly being used to summarize evidence from systematic reviews and meta-analyses, especially for health care interventions ( 14 , 15 ). We, therefore, set out to conduct an umbrella review of systematic reviews and meta-analyses of the prevalence estimates of developmental disabilities for comparison with estimates from other sources of population data in global health. The primary goal of this umbrella review was to provide a narrative synthesis of the selected reviews due to well-documented differences in the methodological approaches to disability measurement ( 3 ).

The protocol for this systematic umbrella review was registered in the International Prospective Register of Systematic Reviews (PROSPERO), reference number #CRD42022373552 ( https://www.crd.york.ac.uk/prospero/#searchadvanced ). We adopted the Preferred Reporting Items for Overviews of Reviews (PRIOR) statement for conducting umbrella reviews ( 16 ). This statement was considered more up-to-date and better suited for an umbrella review than the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). The term “reviews” in this paper is used for published articles that are systematic reviews and meta-analyses of primary studies. The term “primary studies” refers to any original research or investigation conducted to determine the prevalence of specific developmental disabilities in a defined population.

Search strategy and selection criteria

We searched PubMed, Scopus, EMBASE, PsycINFO, and Cochrane Library in October 2022 using the terms (“prevalence” OR “incidence”) AND (“disability” OR “impairment” OR “disorder”), filtered for systematic reviews and meta-analyses, English Language, and children under 20 years published between September 2015 (when the SDGs were launched) and August 2022. Eligible systematic reviews were those that were peer-reviewed with a clearly stated research question, systematic search of at least two databases and systematic data synthesis. No supplementary search for primary studies was conducted ( 16 ). The GBD Study from IHME ( https://vizhub.healthdata.org/gbd-results/ ) is presently the only global health database that provides global, regional, and national prevalence estimates of specific disabilities among children and adolescents according to the American Psychiatric Association's (APA's) Diagnostic and Statistical Manual of Mental Disorders (DSM) ( 17 ), or WHO's International Classification of Diseases (ICD) codes ( 18 ). The selection of specific disabilities for our umbrella review was therefore guided by those typically reported by GBD database to facilitate appropriate comparability ( 3 ). These disabilities include attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder (or simply “autism” hereinafter), cerebral palsy, developmental intellectual disability, epilepsy, hearing loss and vision loss. We also included developmental dyslexia because of its relevance to the disability-inclusive education provision in the SDGs ( 1 ). Developmental dyslexia is a specific impairment characterized by severe and persistent problems in the acquisition of reading skills and it is not typically reported by GBD. Two independent reviewers/authors (BOO and TS) searched titles and abstracts for eligibility and evaluated the full texts of the eligible articles for inclusion. Any unresolved conflict was to be referred to a third reviewer/author (FAO) for adjudication. Reviews that provided pooled estimates with confidence intervals of the selected disabilities were included. In general, these reviews assessed the heterogeneity of the eligible primary studies and performed random effects meta-analysis to estimate the pooled prevalence of a disability. No distinction was made between reviews that evaluated population-based primary studies and those based on a random sample of participants. We excluded reviews that focused on a specific population group such as children who are born preterm, those with different birth weights, refugees, children exposed to HIV or malnourished children. We also excluded reviews that reported a subset of children with a specific disability such as children with refractive errors among those with vision loss as well as reviews that were published before September 2015, that focused on specific countries, one geographical region, or had less than 10 primary studies as such reviews were unlikely to accurately reflect the overall prevalence of disability among all children and adolescents. In order to minimize the risk of missing other relevant systematic reviews, a further manual search of PubMed and selected child health journals was conducted specifically for each of the eight selected disabilities. The reference lists of included reviews were also searched for the identification of additional eligible references.

Data extraction

The citations for the retrieved reviews were first migrated to separate spreadsheets based on the standard fields in each database. A combined spreadsheet was then created for the selected articles with the following fields: source database, year of publication, authors, title, journal, abstract and journal link to the full text. From the full text of the selected articles, the following information were extracted by two authors (BOO and TS): name of disability, citation, year of publication, databases searched, number of primary studies, number of countries covered, proportion of countries from LMICs, overall study size, age group of the reported prevalence estimate, global prevalence estimate, prevalence estimate for high-income countries (HICs), prevalence estimate for LMICs, and remarks. The composition of HICs and LMICs is based on the 2022 World Bank classification ( https://data.worldbank.org/country/XO ).

Evaluation of the methodological quality

The risk of bias (quality) of included reviews was assessed independently by two reviewers (BOO and TS). The Assessment of Multiple Systematic Reviews (AMSTAR2) tool (available at https://amstar.ca/Amstar-2.php ) ( 19 ) and the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for umbrella reviews ( 20 ) were used as neither tool covered all relevant sources of bias in reviews on the prevalence estimates of developmental disabilities. For instance, AMSTAR2 was specifically designed for health intervention research but it is more comprehensive than JBI checklist and accounts for the quality of the primary studies included in the meta-analysis, without limiting the quality assessment to the technical aspects of the meta-analysis itself. The AMSTAR2 questionnaire has 16 criteria and requires reviewers to respond with a “Yes” or “Partial Yes” or “No” or “No Meta-analysis” option. Overall quality was classified as “critically low,” “low,” “moderate,” and “high” ( 17 ). JBI consists of 10 criteria scored as being “met” (1), “not met” (0), or “unclear” (UC), resulting in an overall quality score of 0 to 10. The scores were categorized as low (0–4), medium (5–7), and high-quality (8–10) reviews. Disagreements on risk of bias ratings were resolved through discussion.

Global Burden of Disease estimates

The latest GBD estimates of developmental disabilities in children and adolescents in 2019 were obtained from two publications ( 3 , 21 ), which were extracted from the substantive GBD 2019 Database ( https://vizhub.healthdata.org/gbd-results/ ) and the GBD-WHO Rehabilitation Database or “WHO Rehabilitation Need Estimator” ( https://vizhub.healthdata.org/rehabilitation/ ). These are the only sources of global and regional prevalence estimates of specific developmental disabilities covering 204 countries and territories, including the 193 UN Member States. The GBD methodology has been extensively reported ( 3 , 21 , 22 ). In summary, the prevalence estimation for each condition begins with the compilation of all available data inputs from systematic reviews of the literature, hospital and claims databases, health surveys, case notification systems, cohort studies, and multinational survey data. A comprehensive list of the sources of input data for each condition is publicly available at the Global Health Data Exchange ( https://ghdx.healthdata.org/gbd-2019/data-input-sources ). In the data preparation, efforts were made to (i) optimize the comparability of data derived from various sources using different methods; (ii) find a consistent set of estimates across prevalence data; and (iii) generate estimates for locations with sparse or no data by using available information from other locations combined with covariates. Prevalence estimates are then generated using DisMod-MR 2.1, a statistical modeling technique developed specifically for the GBD project. This is a Bayesian meta-regression tool that synthesizes epidemiological data for fatal and non-fatal health outcomes from disparate settings and sources, adjusting for different case definitions/diagnostic criteria or sampling methods, to generate internally consistent estimates by geographical location, year, age group, and sex. The GBD database contains estimates from 1990 to 2019 and are accompanied by the corresponding 95% uncertainty bounds intervals (UI). Prevalence estimates are available for seven of the eight selected disabilities. Developmental dyslexia is presently not included in the GBD databases. We did a narrative synthesis of included studies in comparison to the GBD (2019) study and compared prevalence estimates for the eight selected disabilities.

The initial search of the five bibliographic databases yielded 3453 articles composed as follows: Scopus ( n = 1,788), PubMed ( n = 681), EMBASE ( n = 755), PsycINFO ( n = 87) and Cochrane Library ( n = 142). Three articles were identified from outside the databases giving a total of 3,456 articles ( Figure 1 ). A total of 54 articles were selected for full-text review based on the inclusion and exclusion criteria. After the review of the full-texts, 44 articles were excluded and the reasons for their exclusion are summarized in Supplementary Table S1 . The most common reason for exclusion was the absence of global and regional prevalence estimates for children and adolescents. Of the 10 articles selected for inclusion that reported pooled global prevalence estimates of disabilities ( 10 – 12 , 23 – 29 ), three articles focused on ASD and the remaining seven articles were each focused on one disability. A summary of the selected reviews is presented in Table 1 . The primary studies covered by the selected systematic reviews and meta-analyses ranged from 14 to 88 articles and the vast majority were from HICs. The reported age groups varied across most reviews except for cerebral palsy, hearing loss and vision loss. Prevalence estimates of developmental disabilities in LMICs were only reported for ASD, cerebral palsy, and developmental dyslexia. Prevalence estimates for the WHO or World Bank world regions were reported for developmental dyslexia and vision loss. Since the prevalence estimates from most of the systematic reviews were derived from primary studies conducted in HICs, the GBD global estimates were reported along with the estimates for HICs as prevalence estimates for LMICs as a group are not reported separately by GBD ( Figure 2 ).

www.frontiersin.org

Figure 1 . Flow diagram of the study selection process and results.

www.frontiersin.org

Table 1 . Prevalence estimates of developmental disabilities in children and adolescents reported in systematic reviews (2015–2022) compared to GBD 2019 estimates.

www.frontiersin.org

Figure 2 . Prevalence estimates of selected developmental disabilities in children under 20 years in 2019 by the Global Burden of Disease (GBD) Study Group.

Attention-deficit/hyperactivity disorder

Barican et al. reported a pooled prevalence of 3.7% (95% CI: 2.3–5.7) in children aged 4–18 years from 14 primary studies in 11 countries ( 23 ). The primary studies covered the period January 1990 to February 2021, and specifically excluded studies from LMICs. The GBD estimated the prevalence of ADHD among children 0–19 years as 1.9% (95% UI: 1.3–2.6) in 2019 ( Table 1 ). The GBD prevalence estimate of ADHD for HICs is approximately 3.0% (95% UI: 2.0–4.2), suggesting a far lower estimate for LMICs ( Figure 2 ).

Autism spectrum disorder

Three reviews all published in 2022 reported prevalence estimates of ASD DHD that ranged from 0.6% (95% CI: 0.4–1.0) to a median of 1.0% (Interquartile range: 1.1–4.4) ( 11 , 24 , 25 ). One study by Barican et al. reported estimates for ADHD and ASD, but the estimate for ASD was not considered as it was derived from only four primary studies ( 23 ). None of the reviews provided pooled estimates specifically for children and adolescents. The primary studies covered ranged from 51 to 71 articles derived from 25 to 41 countries, less than half of which were LMICs in all three reviews. One of the reviews by Wang et al. aimed to determine the prevalence of gastrointestinal symptoms in individuals with ASD and reported pooled estimates of ASD for HICs (0.9%, 95% CI: 0.8–1.2) and LMICs (1.6%, 95% CI: 1.1–2.0) ( 25 ). Four of the 51 primary studies in this review involved individuals older 20 years or older and the selected studies were published between 2001 and 2022. Regional estimates were reported for Africa (3.0%, 95% CI: 2.5–3.4), Oceania (2.6%, 95% CI: 1.6–3.8), the Americas (1.3%, 95% CI: 1.1–1.6), Asia (0.3%, 95% CI: 0.3–0.4) and Europe (0.7%, 95% CI: 0.6–0.8). The GBD global estimate for ASD was 0.4% (95% UI: 0.3–0.5) with a higher prevalence of 0.7% (95% UI: 0.6–0.8) estimated for HICs ( Figure 2 ), suggesting a lower prevalence for LMICs compared to HICs.

Cerebral palsy

The included systematic review by McIntyre et al. reported prevalence estimates for HICs and LMICs separately ( 10 ). A total of 41 primary studies were included in the review derived predominantly from surveillance registries in 27 countries, six of which were LMICs. The review covered studies published between January 2011 and November 2020 and the sample included children with birth year of 1995 and beyond. The estimated birth prevalence of cerebral palsy was approximately 0.2% (95% CI: 0.1–0.2) for HICs and 0.3% (95% CI: 0.3–0.4) for LMICs among children 0–18 years. A pooled global estimate was not reported nor estimates by geographical world regions. The meta-analysis was based on children with birth year from 2010. The GBD estimate for cerebral palsy was 0.9% (95% UI: 0.8–2.0) globally based on children with moderate to severe motor impairment ( 21 ). The prevalence estimate for HICs was 0.6% (95% UI: 0.5–0.6) which would suggest a higher prevalence for LMICs than the reported global estimate.

Developmental intellectual disability

Only one systematic review by McKenzie et al. published in 2016 was identified for this study ( 26 ). The review included primary studies published between 2010 to 2015 and no meta-analysis was conducted. There were 18 primary studies covering all age groups from 9 countries, and all but 2 countries were HICs. Prevalence was highly variable across studies and ranged from 0.22 % in 2007–2008 (USA) to 1.55 % in 1996 (USA) among children and adolescents. The GBD global estimate was 3.1% (95% UI: 2.3–3.8) and the estimate for HICs was 1.5% (95% UI: 1.2–1.8), suggesting a significantly higher prevalence for LMICs than the global estimate ( Figure 2 ).

One systematic review by Fiest et al. published in 2017 was eligible for inclusion ( 27 ). The review covered the period from 1985 to October 2013 and included 63 primary studies in all age groups (0–60+ years) from 42 countries, only 8 of which were HICs. Prevalence estimate was reported separately for children aged 0–9 years (0.5%, 95% CI: 0.4–0.8) and children/adolescents aged 10–19 years (0.9%, 95% CI: 0.7–1.2). Overall pooled estimates for all age groups were reported separately for HICs and LMICs but not for children and adolescents. The GBD global estimate was 0.7% (95% UI: 0.6–0.9) and the estimate for HICs was 0.6% (95% UI: 0.5–0.8), suggesting a significantly higher prevalence for LMICs than the global estimate ( Figure 2 ).

Hearing loss

The systematic review by Wang et al. published in 2019 was the only eligible study ( 28 ). The review was specifically conducted for children aged 0–18 years and included 88 articles published between January 1996 and August 2017 from 39 countries, 23 (or roughly 60%) of which were LMICs. The review computed pooled estimates at different hearing threshold levels, and the prevalence decreased as the severity of hearing loss (the threshold cutoff) increased. Prevalence estimates ranged widely from as low as 0.1% (95% CI, 0.1–0.2) when hearing loss was defined using a lower frequency average (0.5, 1, and 2 kHz) with a hearing threshold/level of 40 decibel (40-dBHL) in both ears to as high as 17.9% (95% CI: 15.9–20.0) when using a full frequency average (0.5 to 8 kHz) with a 15 dBHL threshold in 1 or both ears. Two global prevalence estimates using the most reported thresholds for hearing loss were presented: 13.1% (95% CI: 10.0–17.0) based on >15 dBHL and 8.1% (95% CI: 1.3–19.8) based on >20 dBHL. As recommended by the WHO, the GBD uses 20 dBHL threshold for all its computations. The global prevalence was estimated as 4.0% (95% UI: 3.5–4.5) while the estimate for HICs was 1.9% (95% UI: 1.6–2.1), which suggests a higher prevalence for LMICs than the global estimate ( Figure 2 ).

Vision loss

One systematic review by Yekta et al. published in 2022 met our inclusion criteria ( 12 ). The review included 80 studies published between 1971 and 2018 from 28 countries, 19 of which are LMICs. It is the only systematic review that was specifically conducted among children and adolescents below 20 years. It was also the only review that reported estimates for all WHO regions. The global prevalence of vision loss was 12.7% (95% CI: 9.3–16.2) based on uncorrected visual acuity (UCVA) of 20/40 or worse in the better eye, and 7.3% (95% CI: 4.3–10.2%) based on UCVA of 20/60 or worse in the better eye. The GBD global prevalence was estimated as 1.3% (95% UI: 1.1–1.5) using visual acuity of less than 6/18 according to the Snellen chart, while the estimate for HICs was 1.3% (95% UI: 1.1–1.5) ( Figure 2 ).

Developmental dyslexia

One systematic review by Yang et al. published in 2022 provided the most comprehensive and up-to-date status of children with developmental dyslexia globally ( 29 ). The review covered 58 primary studies published as far back as the 1950s until June 2021 and involved school children aged 6–13 years. A total of 58 studies were selected for the review drawn from 16 countries, 6 of which were LMICs. The pooled global prevalence was 7.1% (95% CI: 6.3–8.0%). The prevalence estimates for HICs (7.1%, 95% CI: 5.5–8.8%) and middle-income countries (7.1%, 95% CI: 6.1–8.2%) were similar. Pooled estimates based on WHO regions were also reported. However, developmental dyslexia is not included in the GBD database.

Risk of bias

The quality of the selected reviews is summarized in Supplementary Tables S2 , S3 . The inter-rater reliability after the first round of independent evaluation was 94.8% for the AMSTAR2 and 98.3% for JBI Checklist. Differences were resolved by consensus. For example, the AMSTAR2 required authors to provide a list of excluded reviews and justify the exclusions. This accounted for most of the discrepancies between the two raters. It was therefore agreed that reviews that reported the excluded primary studies in the PRISMA flow diagram with explanations for the exclusion should be considered as satisfying this criterion. Based on AMSTAR2, none of the reviews met the criteria for high quality and the most were either of low or critically low quality. In contrast, based on JBI checklist, none of the reviews were of low quality. In fact, 9 of the reviews were of high quality and 3 of medium quality.

We set out to provide an overview of the pooled prevalence estimates of commonly reported disabilities in children and adolescents derived from systematic reviews and meta-analyses, published approximately midway into the SDGs and to compare the findings with estimates from alternative data sources in global health. To our best knowledge, this is the first systematic umbrella review on the global prevalence of the selected disabilities in children and adolescents. The principal finding was that sensory impairments were the most prevalent disabilities (13.1% for hearing loss and 12.7% for vision loss) while cerebral palsy was the least prevalent disability (approximately 0.2%) globally.

Another important finding was that most of the global prevalence estimates were derived from primary studies conducted in HICs and estimates for LMICs were reported for only three disabilities: autism spectrum disorder, cerebral palsy, and developmental dyslexia. The highest number of countries providing primary data for any disability was 56, which is 29% of all UN Member States that signed the SDGs. Regional prevalence estimates were only available for autism spectrum disorder, vision loss and developmental dyslexia. In contrast, the GBD estimates were available for high-income countries which gave indications on the contribution of LMICs to the global prevalence for the selected disabilities except developmental dyslexia. For example, the contributions of LMICs to the global prevalence of hearing loss and intellectual disability were substantially higher than those from high-income countries, in contrast to findings on autism spectrum disorder and ADHD.

Another notable finding was that the age groups of children reported in the reviews varied which makes direct comparison of estimates challenging. Furthermore, the global prevalence estimates reported for ADHD, autism, epilepsy, hearing loss and vision loss in systematic reviews were higher than those reported by the GBD. In contrast, prevalence estimates for cerebral palsy and intellectual disability from systematic reviews were lower than those reported by GBD. Based on GBD data, hearing loss was the most prevalent disability (4.0%) and autism was the least prevalent (0.4%) disability in children and adolescents. The modeling techniques used by GBD for each of the disabilities and the number of countries covered would have accounted for the differences in the global prevalence estimates between the GBD and the systematic reviews. However, the pooled prevalence estimate for cerebral palsy for LMICs of approximately 0.3% does not appear to reflect the well documented disproportionately high burden of the risk factors for cerebral palsy and the reported prevalence estimates in young children in LMICs, especially in South Asia and sub-Saharan Africa ( 21 , 30 , 31 ). For example, in one robust population-based study in India, the prevalence estimate of up to 2.1% for neuromotor impairments including cerebral palsy was reported ( 31 ).

Another major finding was the sharp contrast in the quality rating of the included reviews from two different assessment tools. The major reason for the poor quality rating based on AMSTAR2 were that most of the reviews (8 out of 12) did not provide an explicit statement that the review methods were established prior to the conduct of the review which constitutes a major risk of bias in all included reviews ( 19 ). In addition, none of the reviews reported the sources of funding for the primary studies that were selected. For these and other reasons we concluded that the available reviews are generally not of a high quality to inform policy interventions in global health.

These findings would suggest that prevalence estimates derived from systematic review and meta-analyses are unlikely to provide comparable data for different disabilities to satisfy the requirements for policy and investment decisions in global health, especially in relation to population-level information for service planning. Prevalence estimates for geographical world regions were not available for most disabilities. More crucially, it was difficult to combine the estimates from the various reviews to determine an overall global estimate of disabilities in children and adolescents due to marked variability of study designs, methodological approaches, sampling strategies, and the diagnostic criteria used in case ascertainment ( 32 ). These limitations have accounted for the growing reliance by policymakers on alternative approaches and sources of global estimation of population health metrics including household surveys and statistical modeling ( 3 , 22 , 33 ). In order to address these limitations, the GBD for example, utilizes sophisticated statistical techniques to (i) optimize the comparability of data derived from various sources using different methods; (ii) find a consistent set of estimates across prevalence data; and (iii) generate estimates for locations with sparse or no data by using available information from other locations combined with covariates ( 22 ). However, it is important to clarify that GBD estimates are equally associated with several limitations which have been reported extensively in the literature ( 3 , 21 , 22 ). For example, The GBD methodology of estimating the prevalence of disabilities based on sequelae of the underlying health conditions or surrogates may result in over-estimation or under-estimation due to the difficulty in accurately accounting for idiopathic impairments. Behavioral conditions such as ASD and ADHD, continue to rely on sparse data in many regions, particularly LMICs. In addition, The GBD estimates for disabilities still do not fully reflect the complex and dynamic relationship between health conditions and contextual personal or environmental factors under the ICF, as such they provide a limited picture of disability. It is also important to mention that while cerebral palsy is least prevalent among the selected developmental disabilities, it is the leading cause of early-onset physical disability. Considering that cerebral palsy is lifelong and very disabling for some people, the impact in terms of disability-adjusted life years makes cerebral palsy a more significant condition from a public health perspective than its low prevalence might suggest ( 34 ). The use of live births as denominator in computing the prevalence, is also unlikely to reflect the extent of the disability in the population optimally.

A major strength of this study is that the findings from the systematic reviews were compared with the latest prevalence estimates in the GBD database, which is novel. We had previously demonstrated that the prevalence estimate of disabilities in children and adolescents (<20 years) by GBD and UNICEF were not statistically different and were statistically equivalent ( 3 ). The study also complied with the key quality measures recommended by AMSTAR2, including prior registration with PROSPERO and the provision of a separate list of excluded reviews and reasons for exclusion. Another unique feature was the quality evaluation of the included reviews using two separate risk-of-bias tools. We also included developmental dyslexia which is the most common type of learning disability, accounting for approximately 80% of all learning disabilities but rarely reported in the global health literature ( 29 , 35 ).

A few limitations of this umbrella review are worth restating. First, the electronic databases searched were not exhaustive which would have resulted in a potential selection bias. For example, we excluded non-English articles, and we did not search Web of Science, Google Scholar, and regional databases such as the WHO Library (WHOLIS), LILACS (formerly Latin America Index Medicus) and African Index Medicus for additional eligible articles from LMICs, which could have biased the findings. Second, no meta-analysis of the reported estimates was undertaken, primarily due to heterogeneity in the methods, age groups and the sample sizes of the included reviews. However, umbrella reviews in general are aimed at summarizing the evidence rather than to re-synthesize primary studies ( 20 ). Third, there was wide variation in the period covered by selected reviews which would have made comparison of reported estimates across disabilities biased and inconsistent. Fourth, prevalence estimates reported for HICs frequently mask the health and social inequalities in rural and isolated areas designated as medical deserts due to inadequate access to medical care.

Up-to-date prevalence estimates of disabilities in children and adolescents are essential to raise awareness and inform policy initiatives, service planning, resource allocation, and research priorities. However, available estimates from systematic reviews and meta-analyses do not provide representative evidence on the global and regional prevalence of developmental disabilities due to limited geographical coverage and substantial heterogeneity in methodology across the primary studies. Population-based data for all regions that reflect and adjust for these limitations such as those reported by GBD Study periodically are warranted to inform global health policy and intervention.

Author contributions

BO drafted the manuscript. TS, FO, MN, MS, and AD critically reviewed the draft and suggested essential edits. All authors contributed to revising the manuscript and have approved of the final version.

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

The reviewer CS declared a past co-authorship with the author BO to the handling editor.

Publisher's note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Supplementary material

The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fpubh.2023.1122009/full#supplementary-material

1. United Nations. Sustainable Development Goals. UN, New York . (2015). Available online at: http://www.un.org/sustainabledevelopment/sustainable-development-goals/ (accessed November 30, 2022).

Google Scholar

2. UNICEF. Seen, counted, included: Using data to shed light on the well-being of children with disabilities. New York: United Nations Children's Fund . (2021). Available online at: https://data.unicef.org/resources/children-with-disabilities-report-2021/ (accessed November 30, 2022).

3. Olusanya BO, Kancherla V, Shaheen A, Ogbo FA, Davis AC. Global and regional prevalence of disabilities among children and adolescents: Analysis of findings from global health databases. Front Public Health . 10:977453. doi: 10.3389/fpubh.2022.977453

PubMed Abstract | CrossRef Full Text | Google Scholar

4. Convention on the Rights of Persons with Disabilities (CRPD) 2006. CRPD . (2006). Available online at: https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf (accessed November 30, 2022).

5. United States. Congress. Senate. Committee on Labor and Human Resources. The Developmental Disabilities Assistance and Bill of Rights Act of 1990. Washington, DC. (1990).

6. Boulet SL, Boyle CA, Schieve LA. Health care use and health and functional impact of developmental disabilities among US children, 1997-2005. Arch Pediatr Adolesc Med. (2009) 163:19–26. doi: 10.1001/archpediatrics.2008.506

7. Sackett DL, Rosenberg WM, Gray JA, Haynes RB, Richardson WS. Evidence based medicine: what it is and what it isn't. BMJ. (1996) 312:71–2. doi: 10.1136/bmj.312.7023.71

8. Chalmers I, Hedges LV, Cooper H. A brief history of research synthesis. Eval Health Prof. (2002) 25:12–37. doi: 10.1177/0163278702025001003

9. Starr M, Chalmers I, Clarke M, Oxman AD. The origins, evolution, and future of The Cochrane Database of Systematic Reviews. Int J Technol Assess Health Care. (2009) 25:182–95. doi: 10.1017/S026646230909062X

10. McIntyre S, Goldsmith S, Webb A, Ehlinger V, Hollung SJ, McConnell K, et al. Global prevalence of cerebral palsy: A systematic analysis. Dev Med Child Neurol. (2022) 64:1494–506. doi: 10.1111/dmcn.15346

11. Zeidan J, Fombonne E, Scorah J, Ibrahim A, Durkin MS, Saxena S, et al. Global prevalence of autism: A systematic review update. Autism Res. (2022) 15:778–90. doi: 10.1002/aur.2696

12. Yekta A, Hooshmand E, Saatchi M, Ostadimoghaddam H, Asharlous A, Taheri A, et al. Global prevalence and causes of visual impairment and blindness in children: A systematic review and meta-analysis. J Curr Ophthalmol. (2022) 34:1–15. doi: 10.4103/joco.joco_135_21

13. Polanczyk GV, Salum GA, Sugaya LS, Caye A, Rohde LA. Annual research review: A meta-analysis of the worldwide prevalence of mental disorders in children and adolescents. J Child Psychol Psychiatry. (2015) 56:345–65. doi: 10.1111/jcpp.12381

14. Bougioukas KI, Vounzoulaki E, Mantsiou CD, Papanastasiou GD, Savvides ED, Ntzani EE, et al. Global mapping of overviews of systematic reviews in healthcare published between 2000 and 2020: a bibliometric analysis. J Clin Epidemiol. (2021) 137:58–72. doi: 10.1016/j.jclinepi.2021.03.019

15. Sadoyu S, Tanni KA, Punrum N, Paengtrai S, Kategaew W, Promchit N, et al. Methodological approaches for assessing certainty of the evidence in umbrella reviews: A scoping review. PLoS ONE. (2022) 17:e0269009. doi: 10.1371/journal.pone.0269009

16. Gates M, Gates A, Pieper D, Fernandes RM, Tricco AC, Moher D, et al. Reporting guideline for overviews of reviews of healthcare interventions: development of the PRIOR statement. BMJ. (2022) 378:e070849. doi: 10.1136/bmj-2022-070849

17. American Psychiatric Association (APA). Diagnostic and Statistical Manual of Mental Disorders: DSM-5. Washington, DC: APA. (2013). doi: 10.1176/appi.books.9780890425596

18. World Health Organization. Classification of diseases (ICD) . (2020). Available online at: https://www.who.int/standards/classifications/classification-of-diseases (accessed November 30, 2022).

19. Shea BJ, Reeves BC, Wells G, Thuku M, Hamel C, Moran J, et al. AMSTAR 2: a critical appraisal tool for systematic reviews that include randomised or non-randomised studies of healthcare interventions, or both. BMJ. (2017) 358:j4008. doi: 10.1136/bmj.j4008

20. Aromataris E, Fernandez R, Godfrey CM, Holly C, Khalil H, Tungpunkom P. Summarizing systematic reviews: methodological development, conduct and reporting of an umbrella review approach. Int J Evid Based Healthc. (2015) 13:132–40. doi: 10.1097/XEB.0000000000000055

21. Olusanya BO, Gladstone M, Wright SM, Hadders-Algra M, Boo N-Y, Nair MKC, et al. Cerebral palsy and developmental intellectual disability in children younger than 5 years: Findings from the GBD-WHO Rehabilitation Database 2019. Front Public Health. (2022) 10:894546. doi: 10.3389/fpubh.2022.894546

22. GBD 2019 Diseases and Injuries Collaborators. Global burden of 369 diseases and injuries in 204 countries and territories, 1990-2019: A systematic analysis for the Global Burden of Disease Study 2019. Lancet . (2020) 396:1204–22. doi: 10.1016/S0140-6736(20)30925-9

23. Barican JL, Yung D, Schwartz C, Zheng Y, Georgiades K, Waddell C. Prevalence of childhood mental disorders in high-income countries: a systematic review and meta-analysis to inform policymaking. Evid Based Ment Health. (2022) 25:36–44. doi: 10.1136/ebmental-2021-300277

24. Salari N, Rasoulpoor S, Rasoulpoor S, Shohaimi S, Jafarpour S, Abdoli N, et al. The global prevalence of autism spectrum disorder: a comprehensive systematic review and meta-analysis. Ital J Pediatr. (2022) 48:112. doi: 10.1186/s13052-022-01310-w

25. Wang J, Ma B, Wang J, Zhang Z, Chen O. Global prevalence of autism spectrum disorder and its gastrointestinal symptoms: A systematic review and meta-analysis. Front Psychiatry. (2022) 13:963102. doi: 10.3389/fpsyt.2022.963102

26. McKenzie K, Milton M, Smith G, Ouellette-Kuntz H. Systematic review of the prevalence and incidence of intellectual disabilities: Current trends and issues. Curr Dev Disord Rep. (2016) 3:104–115. doi: 10.1007/s40474-016-0085-7

CrossRef Full Text | Google Scholar

27. Fiest KM, Sauro KM, Wiebe S, Patten SB, Kwon C-S, Dykeman J, et al. Prevalence and incidence of epilepsy: A systematic review and meta-analysis of international studies. Neurology. (2017) 88:296–303. doi: 10.1212/WNL.0000000000003509

28. Wang J, Sung V, Carew P, Burt RA, Liu M, Wang Y, et al. Prevalence of childhood hearing loss and secular trends: A systematic review and meta-analysis. Acad Pediatr. (2019) 19:504–14. doi: 10.1016/j.acap.2019.01.010

29. Yang L, Li C, Li X, Zhai M, An Q, Zhang Y, Zhao J, Weng X. Prevalence of developmental dyslexia in primary school children: A systematic review and meta-analysis. Brain Sci. (2022) 12:240. doi: 10.3390/brainsci12020240

30. Chen D, Huang M, Yin Y, Gui D, Gu Y, Zhuang T, et al. Risk factors of cerebral palsy in children: a systematic review and meta-analysis. Transl Pediatr. (2022) 11:556–64. doi: 10.21037/tp-22-78

31. Arora NK, Nair MKC, Gulati S, Deshmukh V, Mohapatra A, Mishra D, et al. Neurodevelopmental disorders in children aged 2-9 years: Population-based burden estimates across five regions in India. PLoS Med. (2018) 15:e1002615. doi: 10.1371/journal.pmed.1002615

32. Fiest KM, Pringsheim T, Patten SB, Svenson LW, Jetté N. The role of systematic reviews and meta-analyses of incidence and prevalence studies in neuroepidemiology. Neuroepidemiology. (2014) 42:16–24. doi: 10.1159/000355533

33. Mathers C, Hogan D, Stevens G. Global health estimates: Modelling and predicting health outcomes. In: Macfarlane, S, AbouZahr, C (eds) The Palgrave Handbook of Global Health Data Methods for Policy and Practice . London: Palgrave Macmillan. (2019). doi: 10.1057/978-1-137-54984-6_21

34. Arnaud C, Ehlinger V, Perraud A, Kinsner-Ovaskainen A, Klapouszczak D, Himmelmann K, et al. Public health indicators for cerebral palsy: A European collaborative study of the Surveillance of Cerebral Palsy in Europe network. Paediatr Perinat Epidemiol. (2022). doi: 10.1111/ppe.12950. [Epub ahead of print].

35. Lerner JW. Educational interventions in learning disabilities. J Am Acad Child Adolesc Psychiatry. (1989) 28:326–31. doi: 10.1097/00004583-198905000-00004

Keywords: developmental disabilities, global health, Global Burden of Disease, developmental epidemiology, early childhood development, inclusive education, SDG 4.2

Citation: Olusanya BO, Smythe T, Ogbo FA, Nair MKC, Scher M and Davis AC (2023) Global prevalence of developmental disabilities in children and adolescents: A systematic umbrella review. Front. Public Health 11:1122009. doi: 10.3389/fpubh.2023.1122009

Received: 12 December 2022; Accepted: 24 January 2023; Published: 16 February 2023.

Reviewed by:

Copyright © 2023 Olusanya, Smythe, Ogbo, Nair, Scher and Davis. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

Disclaimer » Advertising

  • HealthyChildren.org

Issue Cover

  • Previous Article
  • Next Article

Criteria Identification

Milestone identification, milestone evaluation, limitations, conclusions, acknowledgments, evidence-informed milestones for developmental surveillance tools.

CONFLICT OF INTEREST DISCLOSURES: Dr Squires is a developer of the Ages & Stages Questionnaires and receives royalties from Brookes Publishing, the company that publishes this tool; the other authors have indicated they have no conflicts of interest relevant to this article to disclose.

Contributed equally as co-senior authors.

  • Split-Screen
  • Article contents
  • Figures & tables
  • Supplementary Data
  • Peer Review
  • CME Quiz Close Quiz
  • Open the PDF for in another window
  • Get Permissions
  • Cite Icon Cite
  • Search Site

Jennifer M. Zubler , Lisa D. Wiggins , Michelle M. Macias , Toni M. Whitaker , Judith S. Shaw , Jane K. Squires , Julie A. Pajek , Rebecca B. Wolf , Karnesha S. Slaughter , Amber S. Broughton , Krysta L. Gerndt , Bethany J. Mlodoch , Paul H. Lipkin; Evidence-Informed Milestones for Developmental Surveillance Tools. Pediatrics March 2022; 149 (3): e2021052138. 10.1542/peds.2021-052138

Download citation file:

  • Ris (Zotero)
  • Reference Manager

Video Abstract

The Centers for Disease Control and Prevention’s (CDC) Learn the Signs. Act Early. program, funded the American Academy of Pediatrics (AAP) to convene an expert working group to revise its developmental surveillance checklists. The goals of the group were to identify evidence-informed milestones to include in CDC checklists, clarify when most children can be expected to reach a milestone (to discourage a wait-and-see approach), and support clinical judgment regarding screening between recommended ages. Subject matter experts identified by the AAP established 11 criteria for CDC milestone checklists, including using milestones most children (≥75%) would be expected to achieve by specific health supervision visit ages and those that are easily observed in natural settings. A database of normative data for individual milestones, common screening and evaluation tools, and published clinical opinion was created to inform revisions. Application of the criteria established by the AAP working group and adding milestones for the 15- and 30-month health supervision visits resulted in a 26.4% reduction and 40.9% replacement of previous CDC milestones. One third of the retained milestones were transferred to different ages; 67.7% of those transferred were moved to older ages. Approximately 80% of the final milestones had normative data from ≥1 sources. Social-emotional and cognitive milestones had the least normative data. These criteria and revised checklists can be used to support developmental surveillance, clinical judgment regarding additional developmental screening, and research in developmental surveillance processes. Gaps in developmental data were identified particularly for social-emotional and cognitive milestones.

The American Academy of Pediatrics (AAP) recommends developmental surveillance and screening to identify children with developmental delays or disabilities (DDs) early, help to ensure timely interventions, and improve outcomes. 1   Developmental surveillance is a longitudinal process that involves eliciting concerns, taking a developmental history based on milestone attainment, observing milestones and other behaviors, examining the child, and applying clinical judgment during health supervision visits (HSVs). Developmental screening involves the use of validated screening tools at specific ages or when surveillance reveals a concern. 1   Diagnostic evaluations are conducted, typically by developmental specialists, to further evaluate and diagnose DDs in children deemed at risk through surveillance and screening processes.

Developmental surveillance is family centered to promote conversations and trusting relationships wherein families can express concerns. 2   Surveillance involves clinical judgment about when a child may be at risk for delays and when additional developmental screening might be warranted. Milestone lists help to guide developmental surveillance, but those used for surveillance, unlike screening and evaluation tools, are not validated. Typically, lists of milestones are uncited, are based on clinical opinion, and/or report the average or median age a milestone should be achieved. Moreover, ages specified for individual milestones are inconsistent across sources. 3 , 4  

Lists that cite average or median ages at which children achieve milestones provide insight into typical development but do not provide clarity for parents, pediatricians, and other early childhood professionals (ECPs) about when to be concerned or when additional screening might be helpful. 4   For example, lists based on median (50th percentile) age milestones might encourage a wait-and-see 5   approach because half of children are not expected to achieve the milestone by that age. In CDC focus groups, parents of children with disabilities reported delays in identification because they were told to wait, that children develop differently, and that some take longer than others. Milestone lists need to support developmental surveillance and clinical judgment on when additional developmental screening could better assess risk for developmental delays.

In 2004, the CDC’s Learn the Signs. Act Early. program developed free developmental surveillance milestone checklists that included developmental warning signs for parents, pediatricians, and ECPs; messaging to “act early” by addressing concerns; and developmental tips/activities. These materials were developed to help parents to recognize typical development, elicit parents’ concerns about their child’s development, improve discussions between parents and professionals about a child’s development, and support universal developmental screening at recommended ages and additional screenings when there are concerns. The milestones were adapted from Caring for Your Baby and Young Child: Birth to Age 5 (5th ed) to align with recommended HSVs. 6   Like most milestone lists, the original sources of the milestones were uncited, and adaptations were based mainly on clinical opinion, not on empirically informed evidence.

Based on 15 years of use, 3 areas for improving the checklists were identified by the CDC. First, criteria for checklists used for surveillance needed to be established to evaluate the existing CDC checklists. Second, milestones within checklists would represent milestones above the 50th percentile 3 , 4 , 7 , 8   to ensure that most children would achieve the milestone by a given age. Lastly, new checklists for the 15- and 30-month HSVs were needed to complete the series 2 months to 5 years of age to improve integration of developmental surveillance across early childhood HSVs. This article presents the results of these revisions.

The AAP Systems of Services for Children and Youth With Special Health Care Needs team identified and convened 8 subject matter experts (SMEs) in different fields of child development. The group included developmental-behavioral, neurodevelopmental, and general pediatricians; child and developmental psychologists; and a professor of special education and early intervention. All SMEs had graduate training and experience in research methodology and medical decision-making and clinical experience in developmental surveillance, screening, and evaluation. One SME was an editor of and 2 contributed to the AAP’s Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents (4th ed). 9   Two SMEs were lead authors of the AAP’s 2020 clinical report, “Promoting Optimal Development: Identifying Infants and Young Children With Developmental Disorders Through Developmental Surveillance and Screening” 1   ; another had long-time experience as a developer of screening tools.

The SMEs developed 11 criteria for CDC surveillance milestones and tools ( Table 1 ). SMEs nominated the criteria on the basis of their clinical experience and use of CDC surveillance materials. Nominations were discussed, and those that were unanimously agreed upon were included as criteria. Of note, the SMEs agreed that milestones should be easily observed in natural settings and ≥75% of children would be expected to achieve a milestone at a given age. The strategy (≥75%) was chosen to support clinical judgment regarding performing additional developmental screenings, with validated screening tools as a next step to assess a child’s risk for developmental delays. This strategy may also prevent a wait-and-see approach because most children of the same age would be expected to achieve the milestone. To reduce confusion about when to be concerned, developmental warning signs were eliminated because not achieving milestones that most children (≥75%) are expected to achieve similarly warrants more in-depth surveillance and consideration for developmental screening.

Criteria for Developmental Milestones and Surveillance Tools.

Criteria developed by SMEs.

Milestones listed separately within CDC materials with parent messaging to act early if child has not attained them.

Milestones for possible inclusion in CDC surveillance materials were identified by the SMEs. Existing CDC milestones were automatically included for evaluation and were the foundation for the revised checklists. Other milestones were identified by a literature review and commonly used developmental resources.

Literature Review

A broad literature search was conducted in March 2019 using MEDLINE, PsychInfo, and ERIC databases. Search terms were developed in collaboration with the CDC librarian after discussion of the objective of the literature review and comprised the following: (1) milestone, normative (data, table, range, value) or age (range, appropriate) AND (2) child development or infant development AND (3) percentile, psychometrics, predictive values, red flags, warning signs, assessment, monitor, delay, or reference (standard, values).

An article was included for evaluation if it was written in English, contained evidence that supported at least one normed individual developmental milestone or included published clinical opinion (ie, consensus milestones) that children exhibit the milestone by a specific age, and limited to children aged ≤5 years. Articles were excluded if evidence was limited to special populations (eg, preterm infants) or risk factors. Non–peer-reviewed articles, dissertations, and books were also excluded.

Articles were evaluated by the first 2 authors to determine if they met inclusion criteria. Articles chosen by both authors, either on initial review or after additional discussion and agreement between these 2 authors, had milestone data extracted for review by the SME group.

Developmental Resources

SMEs nominated several additional resources for evaluation, including parent resources, professional teaching resources, and commonly used screening and diagnostic evaluation tools ( Table 2 ). Inclusion criteria for these resources were availability in English and contained evidence that supported at least one individual developmental milestone or included published clinical opinion (ie, consensus milestones) that children exhibit the milestone by a specific age. All nominations were accepted for additional review.

Additional Developmental Resources Reviewed

Diagnostic evaluation tools were cross referenced when there was lack of agreement supporting a milestone or age of a milestone across other data sources. Not all milestones were cross referenced with diagnostic resources.

CDC Milestones

Existing CDC milestones served as a foundation for identifying milestones and were automatically evaluated.

The following data were extracted from existing CDC milestones, articles selected for review, and developmental resources: individual milestones, supporting references, and any normative data or published clinical opinion for the milestone. Milestones with conflicting data (eg, age at which most children should achieve the milestone) were flagged for additional discussion.

4A comprehensive database was created with information extracted from CDC milestones and resources for individual milestones from ages 2 months to 5 years, aligned with AAP HSV ages, and shared with the SME group. Original data sources, such as articles that met inclusion criteria and nominated developmental resources, were also shared with the SME group. SMEs collaborated through an in-person meeting, 6 virtual meetings, and e-mail reviews of decision summaries from January to September 2019.

During meetings, the SMEs discussed categorizing milestones into 4 developmental domains: (1) social emotional, (2) language/communication, (3) cognitive, and (4) motor. These domains were previously used in CDC materials and could help parents to learn about different areas of child development (eg, social-emotional skills in addition to language/communication skills). Because milestones often represent skills across several domains, they were placed in the domain in which the SME group believed that parents would most likely identify them. For example, reciprocal play skills involving other people were categorized as social-emotional, and other play skills were categorized as cognitive.

Milestones were reviewed for 2 to 3 ages at a time (eg, 2, 4, and 6 months) so that skill progression could be considered. Milestones were reviewed by the SME group on the basis of the criteria outlined in Table 1 . First, SMEs considered milestones with normative data that supported achievement by ≥75% of children at a particular age. Next, they considered milestones from screening and diagnostic tools. Finally, SMEs considered milestones that were based on published clinical opinion. Each of these data sources was cross referenced with the others to get a sense of the evidence base available to support inclusion of a milestone in revised CDC checklists.

If there was disagreement across sources or lack of evidence supporting a milestone for a specific age, additional research was conducted, and additional evidence was then evaluated by the SMEs according to the developed criteria. This included reviewing diagnostic evaluation tools ( Table 2 ) and/or conducting a separate PubMed search for a specific milestone or a related skill. For example, additional evidence was sought for age-specific development of gestures like lifting arms to be picked up, waving bye-bye, and blowing a kiss.

SMEs used the available evidence base and their clinical experience to determine if and at what age a milestone would be included in the revised checklists. Only milestones with unanimous agreement were included.

During the evaluation process, SMEs denoted milestones they included for surveillance but believed that additional research could improve age placement, quality, and/or quantity of supporting evidence or better capture the underlying developmental construct of the milestone. Finally, the SMEs simplified the milestones and added examples to try to improve understanding. The CDC team then reviewed milestones from a cultural and health communication perspective (eg, family friendly, fifth- to sixth-grade reading level), and SMEs reviewed those changes again to ensure that the milestone still represented the developmental construct being assessed.

With the use of back-translation methods, the milestones were translated into Spanish by CDC Multilingual Services and reviewed by 2 native Spanish-speaking pediatricians. Cognitive testing with a diverse sample of parents located in different regions of the United States provided feedback on relatability and clarity, which led the SMEs to make additional changes to wording. Results of cognitive testing will be published separately.

Of the 1027 articles generated from the literature review, 34 met inclusion criteria. Of those, 24 contained normative data, and 10 contained published clinical opinion for ≥1 milestones. Six additional articles were found through independent searches to evaluate individual milestones when SMEs determined that the milestone was appropriate but insufficient or conflicting evidence supported its use at a specific HSV age. Of the articles with normative data, 14 (58.3%) described populations within non–English-speaking countries.

Tables 3 to 6 list the milestones that SMEs included in CDC checklists after critical evaluation and unanimous decision. They are presented by domain with HSV age, references that support the inclusion of the milestone at that age, and whether the milestone was an existing or new CDC milestone. Supporting references are divided into normative data, developmental screening and evaluation tools, and published clinical opinions.

Social-Emotional Milestones With Supporting Normative Data, Evaluation Tools, and Published Clinical Opinion References

ASHA, American Speech-Language-Hearing Association; ASQ-3, Ages & Stages Questionnaires (3rd ed); ASQ-SE-2, Ages & Stages Questionnaires: Social-Emotional (2nd ed); Bayley III, Bayley Scales of Infant and Toddler Development (3rd ed); MCHAT-R, Modified Checklist for Autism in Toddlers, Revised; PEDS-DM, Parents’ Evaluation of Developmental Status With Developmental Milestones. —, Empty cells indicate that type/category of data was not available to support inclusion of that milestone.

Provides baseline distribution data for age of attainment of a milestone for a given population.

Some commonly used developmental screening and diagnostic evaluation tools (not all available tools are represented).

Uncited on the basis of clinical opinion and/or report of the average or median age that a milestone should be achieved.

SME agreement that additional research would be beneficial.

Language and Communication Milestones With Supporting Normative Data, Evaluation Tools, and Published Clinical Opinion References

ASHA, American Speech-Language-Hearing Association; ASQ-3, Ages & Stages Questionnaires (3rd ed); Bayley III, Bayley Scales of Infant and Toddler Development (3rd ed); PEDS-DM, Parents’ Evaluation of Developmental Status With Developmental Milestones. —, Empty cells indicate that type/category of data was not available to support inclusion of that milestone.

Uncited on the basis of clinical opinion and/or report the average or median age that a milestone should be achieved.

Dosman et al 8   contained both published clinical opinion and normative data.

Cognitive Milestones With Supporting Normative Data, Evaluation Tools, and Published Clinical Opinion References

ASHA, American Speech-Language-Hearing Association; ASQ-3, Ages & Stages Questionnaires (3rd ed); ASQ-SE, Ages & Stages Questionnaires: Social-Emotional; Bayley III, Bayley Scales of Infant and Toddler Development (3rd ed); Beery VMI, Beery-Buktenica Developmental Test of Visual-Motor Integration; PEDS-DM, Parents’ Evaluation of Developmental Status With Developmental Milestones. —, Empty cells indicate that type/category of data was not available to support inclusion of that milestone.

Motor Milestones With Supporting Normative Data, Evaluation Tools, and Published Clinical Opinion References

ASQ-3, Ages & Stages Questionnaires (3rd ed); MSEL, Mullen Scales of Early Learning; PEDS-DM, Parents’ Evaluation of Developmental Status With Developmental Milestones. —, Empty cells indicate that type/category of data was not available to support inclusion of that milestone.

Uncited, based on clinical opinion, and/or report the average or median age that a milestone should be achieved.

Previously, CDC had 216 milestones across 10 checklists. With the addition of 15- and 30-month checklists and the evidence review process, 159 milestones were included across 12 checklists. This represented a reduction of 57 (26.4%) CDC milestones, with the average number of milestones per checklist decreasing from 22 to 13.

Of the final 159 milestones that met the evaluation criteria, 94 (59.1%) were based on CDC original milestones and 65 (40.9%) were added on the basis of the milestone identification and evaluation process. One third of the 94 retained CDC milestones were moved to a different age on the basis of the criterion that ≥75% of children would be expected to achieve the milestone by that age. When moved, 21 of those 31 milestones were transferred to an older age. More than half (56.5%) of the original 216 milestones were eliminated ( Supplemental Table 7 ) on the basis of SME criteria, including 25 that were duplicated across checklists at different ages. For example, Tries to use things the right way, like a phone, cup, or book” was on both the 12- and 18-month checklists; this milestone was placed only at 15 months on the basis of supporting evidence. Additionally, eliminating vague terms, such as may or begins, resulted in moving and changing milestones; for example, “Begins to pass things from one hand to another” was removed from the list of milestones at age 6 months and was included as “Moves things from one hand to her other hand” at age 9 months.

The 1-, 2-, and 3-year-old checklists had the greatest decrease in the number of milestones, with a ≥50% reduction. Approximately half of the aggregate loss for these ages was due to moving milestones to the new 15- and 30-month checklists. When combining all new and revised checklists for 1 to 3 years, the number of milestones was reduced by 25.7%, consistent with the 26.4% reduction of milestones across the other age ranges.

All 4 domains had a reduction in number of milestones. Cognitive milestones decreased by 34 (50.7%), social emotional decreased by 16 (27.5%), language decreased by 4 (9.1%), and motor decreased by 3 (6.4%). Social-emotional and cognitive domain milestones were the least likely to have normative data available. The social-emotional domain had 25 (59.5%) milestones with 0 to 1 normed references and 8 (19.0%) with ≥3 normed references. The cognitive domain had 19 (57.6%) milestones with 0 to 1 normed references and 8 (24.2%) with ≥3 references. In contrast, language and motor domains had 11 (27.5%) and 10 (22.7%) milestones with 0 to 1 normed references and 21 (52.5%) and 30 (68.1%) milestones, respectively, with ≥3 normed references.

Of the final 159 milestones, 127 (79.9%) were retained or added on the basis of normative data, whereas 32 (20.1%) milestones were included on the basis of screening and evaluation tools, published clinical opinion, and SME opinion. Of milestones with normative data, 32 had normative data from only 1 resource. The SMEs believed that 22 (13.8%) of the final milestones were candidates for additional research, as noted in Tables 3 – 6 ; this subset includes the milestone “Sings, dances, or acts for you,” the only milestone included or retained without supporting evidence on the basis of SME opinion.

Of the 77 developmental warning signs listed on the old CDC checklists, 59 (76.6%) had a corresponding milestone on the new checklists.

The CDC checklists support developmental surveillance and other important components of the early identification process by pediatricians and other ECPs, including developmental promotion, parent education and engagement, communication of developmental progress and concerns, and developmental screening. 1 , 5 , 9 , 72 – 75   However, variability across surveillance resources, including the CDC’s, can create confusion regarding what constitutes a concern and when developmental screening between recommended ages might be warranted. 3 , 4 , 38 , 76  

An expert working group convened by AAP sought to improve CDC surveillance tools by enhancing conversations among pediatricians, ECPs, and families regarding childhood development and guiding clinical judgment on when to conduct developmental screening between recommended ages. These tools are not intended to replace validated screening tools but instead to promote optimal child development and encourage professionals to act early through surveillance and screening as outlined in the AAP’s clinical report. 1   Results indicate substantial changes were made developing and applying criteria for surveillance milestones and tools, adding 15- and 30-month checklists, and incorporating evidence-informed milestones.

Clinicians have used attainment of developmental milestones for almost a century 77   to determine if a child is developing typically. Pediatricians have reported increasing use of milestone checklists from 53.0% in 2002 to 89.6% in 2016, in addition to their report of increased developmental screening. 78   However, these surveillance milestone checklists are likely based on published clinical opinion due to the lack of published normative milestone data and the lack of citations of original sources on checklists. The domain tables generated from this work linking developmental milestones to empirically informed evidence and published clinical opinion could improve training of professionals and methods for surveillance, 4 , 7 , 8   such as incorporation of the CDC’s open access milestones/checklists into electronic health records.

Milestone checklists used in surveillance are intended to prompt conversations, review developmental history and progress, and elicit concerns. The CDC checklists should not replace universal developmental screening, provide a risk categorization, or diagnose DDs. To determine if concerns about milestones should prompt a more in-depth developmental history, observation, and examination along with consideration for assessing actual risk by screening, the SMEs recommended that most children (≥75%) should be expected to achieve milestones by a given age.

SMEs believed that using 50th percentile milestones for surveillance would not support clinical decision-making for developmental screening because only half of children would be expected to achieve an individual milestone by a given age. Using milestones that 85% or 90% of children would be expected to achieve may limit opportunities for additional screening for too many children at risk for developmental delays. A ≥75% criterion was thus agreed upon to balance informed clinical decision-making regarding developmental screening and provide opportunities to identify children at risk for delays as soon as possible. Pediatricians are encouraged to follow AAP recommendations to screen a child, using validated screening tools, when surveillance reveals a concern or anytime a concern is raised, to identify and refine the risk for developmental delays. 1  

The criterion ( Table 1 ) for milestones representing those that most children (≥75%) would be expected to achieve eliminated the need for the CDC’s previous warning signs because most are now represented as milestones. Using this strategy, SMEs agreed that a child not meeting a milestone should be considered for screening similar to children demonstrating warning signs. Less than a quarter of warning signs could not be replaced with an evidence-informed milestone. Examples not represented as new milestones include subjective items such as “shows extreme behavior (unusually fearful, aggressive, shy or sad)” and items that may be better recognized during a physical examination, such as “stiff or tight muscles.” Additional features of the surveillance tools may identify those types of concerns. For example, the act early message was retained, and new open-ended questions were added to encourage parents to ask about other concerns.

Use of this same strategy is intended to discourage the wait-and-see approach and could prevent worry for children older than the average age of attainment of a milestone but not likely to be at risk for delays. 1 , 5   It could also eliminate the confusion families had with milestones and warning signs on the same checklist and repetition of milestones across checklists.

The application of additional criteria ( Table 1 ) to improve clarity in the revised milestones may help parents, pediatricians, and other ECPs to recognize when missing milestones might indicate the need for developmental screening. Although milestones typically span several developmental domains, SMEs believed that keeping domain labels could improve awareness of the less commonly known social-emotional and cognitive development milestones of young children. Showing progression of a skill, like walking, could demonstrate how earlier milestones lay the foundation for later ones. Adding the open-ended question, “Is there anything your child is doing or is not doing that concerns you?” may encourage parents to discuss the quality with which a child exhibits a milestone, milestones not listed within the sample, and atypical behaviors difficult to capture through a list. 42   Finally, including information on developmental promotion and acting early may empower families to support their child’s development and to ask about screening if they have concerns.

Surveillance of social-emotional and cognitive milestones supports early identification of children with intellectual and social-emotional disorders, including autism spectrum disorder. In our review, milestones included in the social-emotional domain had the fewest normed references per milestone, followed by the cognitive domain, language domain, and motor domain. When social-emotional milestones were available, they were often self-help rather than social engagement and emotional regulation skills. These results highlight the need for additional research on social-emotional milestones. For example, can social-emotional function be assessed using milestones during developmental surveillance at HSVs, and what factors influence the timing and development of social-emotional skills? Despite relatively more evidence in the language domain, SMEs believed that more research is needed in the intersection of the social-emotional and language domains to recognize and monitor the development of social language in young children.

There were limitations with the revision process. SMEs’ opinions determined which HSV was most appropriate for a milestone, given existing evidence and the goal that most children (≥75%) would be expected to achieve it by that age. For example, if there was evidence that 50% of children reach a milestone at 11 months and 90% reach it at 16 months, it was placed on the 15-month checklist. Eighty percent of the revised milestones had normative data to support their inclusion on a specific HSV age checklist. However, it was necessary to use data such as published clinical opinion to represent milestones in all domains across all ages. Regardless of supporting data type, all revised milestones had unanimous SME support for their inclusion in a surveillance tool. When normative data existed, limitations remained in the availability of milestones that met other criteria. For example, sometimes it was difficult to find naturally observable milestones compared with milestones demonstrated during standardized testing. Although the milestones are evidence-informed using international sources and cognitive testing with parents was done, there is no certainty that these new milestones will resonate with all families or that they are the most relevant milestones for developmental surveillance. These checklists and others have not been tested to see whether they indeed lead to appropriate developmental screening between recommended ages and improve early identification.

There are other gaps in developmental surveillance research. Best practices for conducting the recommended 6 components 1   of surveillance are not available. There are limitations in the use of milestones, even evidence-informed ones, as the sole component of developmental surveillance. Milestones/milestone checklists can support some components, such as taking a developmental history and eliciting concerns, but surveillance also involves observation, examination, education, communication, and clinical decision-making. Moreover, trusting relationships may develop through the longitudinal process of surveillance and improve parents’ confidence in sharing concerns and pediatricians’ confidence to assess concerns raised.

Early identification and intervention for the 1 in 6 children with DDs have been shown to improve outcomes. 79 – 83   However, less than a quarter of children with DDs receive early intervention services before age 3 years, 84 , 85   and most children with emotional, behavioral, and developmental conditions, other than autism spectrum disorder, do not receive services before age 5 years. 86   Developmental surveillance is an important part of early identification 1 , 87   and facilitates education, communication, and relationship building among parents, pediatricians, and ECPs. Research in early identification has focused primarily on developmental screening, not surveillance. Improvements in surveillance tools and processes could help to identify concerns and support clinical judgment regarding developmental screening to allow more timely referral to early intervention services and additional evaluation. The methods described herein led to substantial revisions of CDC resources to better support developmental surveillance. Best practices for surveillance and improvements in surveillance tools could be supported by additional research on individual normed milestones, particularly social-emotional and cognitive milestones; how parents, pediatricians, and ECPs learn and understand milestones; which milestones are most likely to lead to appropriate screening; whether the use of milestones that most children (≥75%) would be expected to achieve is appropriate for surveillance; whether categorizing milestones into developmental domains is helpful; and whether cultural differences exist in surveillance milestones and processes. 1 , 3 – 5   , 7   Nevertheless, based on review of milestone data and clinical experience, the SMEs agreed that most typically developing children would achieve the developmental constructs represented. To our knowledge, this attempt is the first to align empirically informed milestones on parent-completed surveillance tools with objectively defined criteria agreed upon by SMEs. The CDC milestones and checklists can be used in continued efforts to improve developmental surveillance.

We thank Mary Cogswell, RN, DrPH, for her review of earlier versions of the manuscript and pediatricians Natalia Benza, MD, and Jose O. Rodriquez, MD, MBA, for their review of the Spanish milestone translations.

FUNDING: This project is supported by the Centers for Disease Control and Prevention of the US Department of Health and Human Services as part of a financial assistance award totaling $100,000, with 100% funded by the Centers for Disease Control and Prevention/US Department of Health and Human Services.

Drs Zubler and Wiggins conceptualized and designed the study, collected data and performed the initial analyses, drafted the initial manuscript, and reviewed and revised the manuscript; Drs Lipkin, Macias, Whitaker, Squires, Pajek and Shaw critically reviewed and revised the manuscript for important intellectual content; Ms Wolf, Ms Slaughter, Ms Broughton, Ms Gerndt, and Ms Mlodoch planned and performed the research and reviewed and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by American Academy of Pediatrics, Centers for Disease Control and Prevention/US Department of Health and Human Services, or the US government.

COMPANION PAPER: A companion to this article can be found online at www.pediatrics.org/cgi/doi/10.1542/peds.2021-054835 .

American Academy of Pediatrics

Centers for Disease Control and Prevention

developmental delay or disability

early childhood professional

health supervision visit

subject matter expert

Competing Interests

Supplementary data.

Advertising Disclaimer »

Citing articles via

Email alerts.

research in developmental disabilities peer review

Affiliations

  • Editorial Board
  • Editorial Policies
  • Journal Blogs
  • Pediatrics On Call
  • Online ISSN 1098-4275
  • Print ISSN 0031-4005
  • Pediatrics Open Science
  • Hospital Pediatrics
  • Pediatrics in Review
  • AAP Grand Rounds
  • Latest News
  • Pediatric Care Online
  • Red Book Online
  • Pediatric Patient Education
  • AAP Toolkits
  • AAP Pediatric Coding Newsletter

First 1,000 Days Knowledge Center

Institutions/librarians, group practices, licensing/permissions, integrations, advertising.

  • Privacy Statement | Accessibility Statement | Terms of Use | Support Center | Contact Us
  • © Copyright American Academy of Pediatrics

This Feature Is Available To Subscribers Only

Sign In or Create an Account

U.S. flag

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

  • Publications
  • Account settings
  • Advanced Search
  • Journal List
  • v.10(2); 2023 Feb

Nursing care for persons with developmental disabilities: Review of literature on barriers and facilitators faced by nurses to provide care

Nazilla khanlou.

1 Faculty of Health, York University, Toronto Ontario, Canada

Christine Kurtz Landy

Rani srivastava.

2 School of Nursing, Thompson Rivers University, Kamloops British Columbia, Canada

Shirley McMillan

3 Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health (CAMH), Toronto Ontario, Canada

Susan VanDeVelde‐Coke

4 Autism Services, Kerry's Place, Aurora Ontario, Canada

Luz Maria Vazquez

Associated data.

Data sharing is not applicable to this article as no new data were created or analyzed in this study.

To identify barriers and facilitators to nursing care of individuals with developmental disabilities (DDs).

Individuals with DDs experience health disparities. Nurses, although well positioned to provide optimal care to this population, face challenges.

Narrative review of extant published peer‐reviewed literature.

Data Sources

Electronic databases, ProQuest and EBSCO, were searched for studies published in English between 2000 and 2019.

Review Methods

Three reviewers reviewed abstracts and completed data extraction. Knowledge synthesis was completed by evaluating the 17 selected studies.

Emerging themes were: (1) barriers and challenges to nursing interventions; (2) facilitators to nursing care; and (3) recommendations for nursing education, policy and practice.

Nursing has the potential to be a key partner in supporting the health of people with DDs.

There is a need for specific education and training, so nurses are better equipped to provide care for people with DDs.

1. INTRODUCTION

Nurses have the potential to contribute statistically significantly to the health of individuals with developmental disabilities (DDs) in acute care, community settings and school settings. Yet, there are few nursing interventions and best practice guidelines focussing on nursing care for people with DDs. This leaves an important gap in our knowledge and practice of nursing care for people with DDs. Moreover, there are wide variations in nursing education and care in developmental disabilities internationally; for example, in the United Kingdom Learning Disabilities Nursing education is offered at the university level and the role of Learning Disability Nurse exists, but there are no similar parallels in Canada. This leads to unequal pathways of nursing care across settings.

Individuals with developmental disabilities experience a constellation of health problems complicated by absence of inclusive health promotion, accessible health care and inequitable distribution of social determinants of health (Marks & Sisirak,  2017 ). Research from Canada, the United States, the United Kingdom and Australia has highlighted that people with DDs are poorly supported by healthcare systems and services (Fisher,  2004 ; Krahn et al.,  2006 ; Scheepers et al.,  2005 ; Sullivan et al.,  2011 ). Providing optimal care for this population is often perceived by healthcare professionals as difficult because of clients' disability‐related social, environmental, cultural, cognitive, behavioural and communication needs (Cheak‐Zamora & Teti,  2015 ; Raemy & Paignon,  2019 ). Nurses working in healthcare settings, community settings and school settings have reported gaps in education and training to address the complex and varied needs of people with DDs (Betz,  2007 ; Fisher et al.,  2020 ; Ndengeyingoma & Ruel,  2016 ; Raemy & Paignon,  2019 ; Singer,  2013 ; Weiss et al.,  2010 ). It is important that nursing care for persons with developmental disabilities be enhanced and standardized with a concentrated focus through nursing education and research.

1.1. Background

Developmental disabilities can encompass limitations in multiple aspects of functioning, including in intellectual capacity (intellectual and executive functioning), adaptive skills (impairments in language and communication, behavioural, emotional regulation) and physical functioning. These limitations begin in childhood and are usually life‐long affecting areas of major life activity including ability to self‐care and live independently as adults (CDC,  2017 ; Services and Support to Promote the Social Inclusion of Persons with Developmental Disabilities Act, 2008, S.O. 2008, c. 14,  2019 ). DDs include neurodevelopmental disorders, such as autism spectrum disorder (ASD), Down syndrome, fragile X syndrome, intellectual disabilities and cerebral palsy (American Psychiatric Association,  2013 ; Thapar et al.,  2017 ). The 2017 Canadian Disability Survey (Morris et al.,  2018 ) reports one in five (22% or 6.2 million people) Canadians (15 years and older) live with one or more disabilities (e.g., mental health, mobility, flexibility, mobility and pain impairment), and 315,470 (or 1.12%) Canadians lived with a DDs. In just five years the number of individuals (15 years and older) with a DDs has almost doubled; in 2012, about 160,500 persons lived with a DDs (Arim,  2015 ) and in 2017 approximately 315,470 persons reported living with a DDs (Statistics Canada,  2020 ).

Compared to the general population young people with DDs experience more comorbid conditions (Schieve et al.,  2012 ) and have a greater onset of chronic health conditions and higher rates of morbidity in later life (Hamdani & Lunsky,  2016 ; Thomas et al.,  2011 ). They also face difficulties in self‐management of health (Cheak‐Zamora & Teti,  2015 ), adhering to treatment (Cooper et al.,  2006 ), voicing their care concerns (Boylan & Ing,  2005 ) and have reduced capacity to manage challenging situations such as loss and separation from family (Janssen et al.,  2002 ; Tyrer et al.,  2006 ). Health inequities further prevent young adults with DDs from accessing health resources (Emerson et al.,  2012 ; Lin et al.,  2019 ; Marks et al.,  2008 ) and affordable healthcare and mental healthcare services (Crane et al.,  2019 ).

Nurses are well positioned to provide direct and coordinated optimal care to individuals with DDs at all healthcare levels (Giarelli & Gardner,  2012 ; Mandal et al.,  2020 ) but are not fully equipped to take on this active care role (Anderson et al.,  2013 ; Cieza,  2015 ). Nurses have reported difficulties in providing care for individuals with DDs due to their clients' communication, social, cognitive, behavioural and physical impairments (Hahn,  2003 ; Smeltzer et al.,  2012 ). More than ever before the number of individuals with DDs needing health care has increased in acute care, primary care, long‐term care and in the community (Harris‐Kojetin et al.,  2016 ). Without targeted nursing education and training focussed on appropriate and effective health care for people with DDs, who experience a wide range of barriers and life‐stage specific healthcare needs, nurses will encounter increasing challenges in providing high‐quality care tailored to the specific individual needs of clients with DDs (Chiri & Warfield,  2012 ; Gardner et al.,  2016 ; Giarelli & Gardner,  2012 ; Johnson et al.,  2012 ). In this paper we present findings from a review of published peer‐reviewed literature on effective training and education approaches for nurses caring for persons with DDs.

Our overall aim was to identify the barriers and facilitators to nursing care of individuals with DDs and provide recommendations. The main objectives of our review were to identify:

  • Research evidence on nursing strategies and interventions for health promotion and health care of individuals with DDs;
  • Knowledge gaps in nursing care that promote the health of individuals with DDs; and
  • The barriers and facilitators to nursing interventions in care of people with DDs.

2.2. Design

We used a narrative literature review approach (Green et al.,  2006 ) to address the issue of how to better prepare nurses to practice quality care of people with DDs. Narratives reviews, also known as unsystematic narrative reviews, are not meant to be systematic or comprehensive searches of all relevant literature on an issue (Davies,  2000 ). They are used to present a broad perspective and narrative syntheses of previously published information on an identified issue and recommendations to address an issue (Green et al.,  2006 ) and to discuss a theoretical point of view (Bernardo et al.,  2004 ). Narrative reviews have been used as educational tools in the continuing medical education field (Bernardo et al.,  2004 ).

2.3. Search methods

Peer‐reviewed literature published from January 2000 up to January 2019 were reviewed to assess the knowledge on nursing strategies and health promotion interventions for individuals with DDs.

2.4. Literature search strategy

A librarian specialized in health literature searches was consulted to assist with the development of the search strategy. The search was conducted using two electronic databases: ProQuest (included all databases) and EBSCO (included all databases), which focus largely on nursing literature. We used the following search terms: Line1: Nurs* Care; line 2: Interventions OR strategies OR Competenc*; and line 3: “developmental disabilit*” OR “developmental disorder*” OR autism OR “cerebral palsy” OR “intellectual disabilit*” across all databases. Figure  1 illustrates the search strategy undertaken. Two reviewers (2nd author and a research personnel) ran the data base searches and selected articles that met eligibility criteria. All types of studies (including reviews and case studies) that focussed on nursing strategies and health promotion interventions for children, youth, elders and adults with DDs in Canada, USA, UK, Australia and New Zealand were included given their similarities in English language and economies. Studies that did not focus on nursing care of individuals with DDs care and not situated in Canada, USA, UK, Australia and New Zealand were excluded. The initial title search yielded 94 studies from EBSCO and 645 studies from ProQuest databases. After duplicate and non‐relevant studies were excluded 34 studies were selected from EBSCO and 100 from ProQuest for abstract review. Three reviewers (2nd author and two research personnel) reviewed the abstracts for selection of articles for full text review. The involvement of the third reviewer was to help resolve disagreements. They discussed the selected articles after re‐reviewing inclusion and exclusion criteria and disagreements resolved till consensus was reached on selected studies.

An external file that holds a picture, illustration, etc.
Object name is NOP2-10-404-g001.jpg

Literature review search strategy

2.5. Search outcomes

The PRISMA flow chart in Figure  1 illustrates the search strategy for the narrative review from initial identification to selection of eligible studies. A total of 32 studies (12 studies from ProQuest and 20 from EBSCO) were selected for full text review by two reviewers (2nd author and last author). Among these 17 selected articles met the eligibility criteria for the narrative review. The excluded articles did not focus on nursing strategies on the care of individuals with DDs. Those focussing on neonates with DDs were also excluded.

2.6. Quality appraisal

The researchers consulted the Preferred Reporting Items for Systematic Review and Meta‐Analyses (PRISMA) extension for scoping reviews statement (Tricco et al.,  2018 ) as a guidance for a thorough examination of the literature and in the limits of a narrative review that does not require a quality appraisal of studies, appraisal of the process and audit of discarded studies. To ensure credibility of studies, the review incorporated several elements of a systematic review including: (1) enhanced reliability by employing three researchers to review the abstracts and full text studies, and then compare/ contrast selected studies, and extracted information. Further, the knowledge synthesis was reviewed by all authors; and (2) using a pre‐defined inclusion and exclusion criteria to select or discard studies. For example, studies were excluded if they did not focus on nursing care of individuals with DDs care, or examined nursing care of neonates with DDs, or were in countries other than Canada, USA, UK, Australia and New Zealand. The limits of narrative summary in assessing quality of studies have been further discussed in the limitations section.

2.7. Data abstraction and synthesis

Data was extracted onto an Excel file. Discrepancies between the reviewers were discussed and resolved. The specific study characteristics gathered included study goals, research design, description of participants and type of disability, tools and strategies used, and study recommendations. The results of individual studies were then analysed iteratively by two authors to determine major themes in relation to issues, tools, strategies and recommendations. Table  1 presents summary of the characteristics of each study.

Characteristics of studies

Note : Study participant is defined as an individual who participates in the study or a person on or in respect of whom any study activities are performed. Tools refers to how data was collected and strategies to the interventions. In the United Kingdom “learning disabilitys” refers to ID.

Abbreviations: ASD, autism spectrum disorder; DD, developmental disability; DDs, developmental disabilities; ED, emergency department; ID, intellectual disability; RCT, randomized controlled trial.

Among the 17 eligible studies, six were qualitative, one was mixed methods (nested qualitative study in a randomized controlled study), three were quantitative (two descriptive and one interventional study), one was a clinical case study, and five studies were literature reviews, and one was a program review. The themes identified from our literature review have been organized by overarching themes as: (1) Barriers and challenges to nursing interventions in care of people with DDs; (2) facilitators to nursing care in promoting the health of individuals with DDs; (3) and emerging recommendations for nursing education, policy and practice.

3.1. Barriers and challenges to nursing interventions in care of people with DDs

Our narrative review found nurses experienced overlapping health systems‐based challenges to providing optimal care to people with DDs, which included time constraints and insufficient staffing, communication challenges and insufficient education and training.

3.1.1. Time constraints and insufficient staffing

Nurses reported time constraints in providing accommodations and having additional responsibilities when caring for people with DDs that may include undertaking health checks, providing compassionate care and relaying health information to clients and their caregivers on medical procedures and examination (Ford,  2020 ; Hemsley et al.,  2012 ). Due to time constraints nurses often avoided direct communication with the patient and depended more upon family carers for communication about procedures and treatment (Hemsley et al.,  2012 ). Not interacting with patients with DDs hindered the development of effective relationships between nurses and their clientele. Shortage of time was also noted to be a barrier to conducting periodic health checks of individuals who have DDs. These comprehensive health assessments, conducted as preventive and diagnostic measures, in primary‐care clinics have been shown to be beneficial for health of people with DDs. The health checks for one patient with DDs typically took 48 min to carry out (Macdonald et al.,  2018 ). The time required to administer the health check was centred around the operational impact on how this intervention impinged on nurses' everyday workload and practice particularly if dealing with larger numbers of patients (Macdonald et al.,  2018 ). Ndengeyingoma and Ruel ( 2016 ) identified that nurses had insufficient time to intervene adequately in situations concerning people with DDs in the emergency room and hospital ward, particularly when care was urgent. Patients with DDs required more time for communication for gathering medical histories for their needs to be specified and procedures to be explained (Ndengeyingoma & Ruel,  2016 ). Patients with DDs often need more time explaining but, as time is limited, they may feel rushed and not fully absorb the information, which may cause elevated emotions that they have challenges dealing with (Ndengeyingoma & Ruel,  2016 ). Thus, rushing urgent care prevented organized care and led to inadequate care approaches, such as use of restraints and sedative medication to prevent injury to clients (Ndengeyingoma & Ruel,  2016 ).

Insufficient staffing magnified the problems associated with managing people with DDs. Nurses reported that because of insufficient staffing providing people with DDs the necessary accommodations were challenging (Macdonald et al.,  2018 ). The nurse—patient ratio did not allow nurses to allocate more time to patients with DDs, thereby respecting their varied needs (Ndengeyingoma & Ruel,  2016 ). Nurses were expected to closely monitor and manage patients with DDs concurrently with their regular duties without any reduction in workload. Moreover, during night shifts fewer healthcare providers knowledgeable in ASD were available (Ndengeyingoma & Ruel,  2016 ). In the emergency department nurses were under constant stress to complete tasks and procedures and their anxiety was heightened when caring for a child with DDs (Drake et al.,  2012 ).

3.1.2. Communication challenges

Nurse reported communication challenges with individuals with DDs, their caregivers and care staff including other nurses, healthcare providers and multidisciplinary teams (Melville et al.,  2005 ). For example, in healthcare settings, because of difficulties managing communication challenges with people with DDs, nurses had difficulty responding to their patient's needs and explaining the intervention or procedure (Ndengeyingoma & Ruel,  2016 ). Families believed that nurses deliberately avoided communication. They perceived this as a negative and discriminatory attitude towards their family members with DDs, which impacted the quality of hospital care their family members with DDs received.

Enhanced communication when caring or supporting people with DDs is crucial at all levels of health care (Hemsley et al.,  2012 ). In the emergency department nurses had to pay close attention to the non‐verbal cues of children with DDs, specifically those with limited verbal ability (Zwaigenbaum et al.,  2016 ). In the absence of a family caregiver/ parent, the experts on their child's needs, preferences and aversions, the use of Augmentative and Alternative Communication (AAC) (including gesture or signing systems, interpreters, communication boards or speech generating devices) by persons with DDs to share their needs reduced nurses guessing their needs and was also more comfortable for the patients (Hemsley et al.,  2012 ). Nurses believed that investing time in learning skills in communication would lead to better assessment, and ultimately save time (Ndengeyingoma & Ruel,  2016 ). In hospital settings at shift change communication between nurses were typically not sufficient to convey and comprehend information about patients with DDs' medical condition, behaviour, routines and functional abilities in activities of daily living, such as eating preferences (Friese & Ailey,  2015 ). Communication was hampered by time constraints, and by level of comfort between the nurses and person with DDs (Singer,  2013 ). In school settings nurses experienced communication challenges with students with DDs, who were not able to articulate their needs. Nurses had difficulty explaining procedures to them and making accurate assessments. Moreover, they were unable to assess if the student had understood their instructions, because not being provided the baseline information on the Individualized Education Program (IEP) they could not assess the developmental levels of their students (Singer,  2013 ).

3.1.3. Insufficient education and training on supporting individuals with DDs

Nurses tended to be more comfortable if they had previous experience caring for patients with a disability and/ or became familiar with persons with DDs over time (Singer,  2013 ). Several studies have shown that education and training on disability provided in nursing schools and during continuing education and professional career development were insufficient. A United Kingdom based study on the training needs of primary health care nurses ( N  = 201) found 86% of practice nurses had communication difficulties during appointments with people with DDs and only 8% of had received training in communicating with this clientele (Melville et al.,  2005 ). In another study nurses in Ireland promoting breasts awareness programs were found to have limited knowledge of women with DDs' cognitive functioning and communication abilities (Kirby & Hegarty,  2010 ).

Professional development programs to educate nurses on specialized health care for children and adults with DDs' diverse needs were found to be insufficient. Registered Nurses in the United Kingdom with additional training in community public health, also known as Health Visitors, had difficulty identifying the health needs of children with ASD and providing them ongoing support because they lacked education and training on the care of people with ASD (Halpin & Nugent,  2007 ). Similarly, care staff for adults with severe DDs living in supported accommodation did not have any specialist knowledge in the care of people with DDs, including the risks associated with constipation, a common ailment in this clientele (Cockburn‐Wells,  2014 ). On a similar note, nurses with several years of nursing experience who transitioned to school nurses had not received any orientation on students with DDs nor were they included in training or staff meetings about this clientele (Singer,  2013 ). Thus, the school nurses encountered difficulties with communication, screenings and completing health assessments of these students (Singer,  2013 ).

A study from Quebec, Canada, noted that hospital nurses' learning needs were informational in nature and relational to best practice intervention strategies, ensuring consistent high‐quality personalized care to individuals with DDs (Ndengeyingoma & Ruel,  2016 ). The strategies included nurses' ability to recognize features of DDs, identify their clients' needs, and organize the continuity of care. The 18 nurses who participated in the study reported that they did not feel confident about their ability to recognize the characteristics of DDs if a patient presented with the condition. They also were unable to recognize the complex needs of patients with DDs and as a result their clinical evaluations of their patients were often incomplete (Ndengeyingoma & Ruel,  2016 ). Health visitors working with families of children with ASD felt they: did not have adequate expertise in child development; lacked competence in their role in identifying children who might have ASD; and would attend training on ASD if offered (Halpin & Nugent,  2007 ). Registered Nurses at a children's hospital participating in a study examining the effectiveness of a coping kit to manage challenging behaviour in children with DDs, including ASD, reported programs that can train nurses in behaviour management skills were often unavailable in their work settings (Drake et al.,  2012 ). Inadequate training and limited resources (such as time constraints) can heighten nurses' challenges in providing care and support of children with DDs (Zwaigenbaum et al.,  2016 ). Findings from a study examining the use of an evaluation tool (the Adaptive Care Screening Tool) to prepare children with DDs for surgery showed that developing a multidisciplinary team and re‐educating the clinic staff were essential for effective perioperative care for this clientele (Balakas et al.,  2015 ).

Kirby and Hegarty ( 2010 ) found all grades of nurses ( n  = 200) in Southern Ireland experienced challenges in promoting breast awareness and screening for women with DDs. Nurses reported inadequacy in their skills on breast self‐examination, uncertainty in their proficiency in the detection of breast anomalies, and difficulties addressing legal and ethical issues, and obtaining consent from women with DDs.

3.2. Facilitators to nursing care in promoting the health of individuals with DDs

Our review identified several factors, which facilitated nurses in providing enhanced care to people with DDs. These include the use of tools and focussed resources, nursing strategies to manage challenging behaviours and using strategies that improve collaboration with family caregivers and healthcare teams.

3.2.1. Tools and focussed resources for nursing care of individuals with DDs

The need for a comprehensive “health service model” to support the psychosocial, medical and educational/ vocational needs of adolescents with DDs in their transition from child‐focussed to adult‐focussed healthcare system in the United States of America (USA) has been identified (Betz,  2007 ). Nurses must have knowledge of their client's transitional needs, so they can develop a youth‐centred transition plan along with members of the school's IEP team that addresses their comprehensive health needs (Betz,  2007 ). The USA based IDEA (Individuals with Disabilities Education Act 1 ) model of assessment to nursing practice allows nurses, with facilitated verbal input of youth with DDs and their caregivers, to identify interests, needs and preferences of transitioning youth for the future, and to develop a transition plan aligned to the youth's goals in the areas of health care, training, employment and community living (Betz,  2007 ). On the same note, school nurses suggested that access to standardized assessment tools and more education on assessment would help their practice and to providing better health care to students with DDs (Singer,  2013 ).

Focussed resources can support and enhance consistency of nursing care and contribute to a safer environment for both nurses and their patients with DDs (Scarpinato et al.,  2010 ). A study examining the benefits of nurse conducted routine health checks in the primary care of people with DDs (the intervention), versus standard health care, found the intervention was most successful with patients whose problems or issues were recognized by nurses, and that further training of nurses would maximize potential benefits for the patients (Macdonald et al.,  2018 ). A written critical incident technique in the United Kingdom helped nurses to pick up cues from their clients with DDs about their religious beliefs and practices and to formulate care plans using a client‐centred approach. This approach helped to identify emotional tensions and turmoil and provide clients the appropriate counselling support to address their spiritual needs (Narayanasamy et al.,  2002 ).

3.2.2. Nursing strategies to manage challenging behaviours

It can be particularly difficult for nurses to provide essential care and treatment for people with DDs with challenging behaviours (Zwaigenbaum et al.,  2016 ). The unfamiliar setting of the emergency department, the “hustle and bustle”, noise and being seen by multiple unfamiliar health care providers can be disturbing for a child with ASD and cause statistically significant stress and anxiety for people with DDs. Further, negative experiences at the hospital or health care visit can potentially impact the behaviour of child's future visits (Zwaigenbaum et al.,  2016 ). In addition, the increased sensitivity to touch of some people with DDs makes it more difficult for nurses to complete clinical examination and diagnostic procedures.

Nurses in healthcare and school settings can adopt techniques to calm children and youth with DDs' behaviour and improve treatment delivery (Drake et al.,  2012 ; McIntosh et al.,  2018 ). Optimizing the environment (Singer,  2013 ) by incorporating “warming up” techniques, moving slowly through procedures and using distraction techniques (e.g., TV, toys and video games) can potentially provide a more positive experience for a child with ASD (Zwaigenbaum et al.,  2016 ) and also make patients with DDs feel calm and less frightened (Friese & Ailey,  2015 ). Changing the environment (Zwaigenbaum et al.,  2016 ), using proactive strategies (such as creativity, sensitivity and awareness) and coping kits can potentially alleviate anxiety and increase cooperation in the hospitalized child with ASD (Drake et al.,  2012 ). These strategies help to reduce, prevent and manage challenging behaviours at initiation of every health care visit (Friese & Ailey,  2015 ). While working with families of children with DDs, availing the parents' expertise reaped increased care benefits (Drake et al.,  2012 ).

The Adaptive Care Plan (ACP) was developed in USA hospitals to improve the surgical experience of children and adolescents with DDs and their families and to manage patients' challenging behaviours (Balakas et al.,  2015 ); it provided nurses an opportunity to learn more about children and adolescents with DDs in their care and to alert them to the child's specific needs. The ACP focussed on several aspects of care including improving the care environment and staffing, educating staff, enhancing communication with clients and increasing parental involvement (Balakas et al.,  2015 ). The ACP also provided guidance on developing and training multidisciplinary team for care of children with DDs (Balakas et al.,  2015 ).

The use of “extrinsic motivation and reinforcement techniques” helped school nurses to promote compliance of hygiene routines for students with ASD (McIntosh et al.,  2018 ). These techniques reduced and managed unwanted attention seeking behaviours in children with ASD. The “give‐get exchange method” used positive reinforcement (such as using verbal praise or gifting candies, stickers or allowing company of favourite toy or person) to motivate the child to do something (McIntosh et al.,  2018 ). Other methods included giving clear, honest explanations paired with a visual aid of what is expected of the child and offering a simple choice. For example, the use of social stories 2 to make children with DDs more calm and less frightened for procedures improved patients' cooperation when care was being provided and reduced behavioural disruptions in hospitals (Friese & Ailey,  2015 ; Kokina & Kern,  2010 ). Similarly, in school settings social stories reduced unwanted behaviour and prompted children with ASD to complete essential tasks (McIntosh et al.,  2018 ).

3.2.3. Collaborating with nursing staff, healthcare teams and family caregivers

Family caregivers can be a key resource for the patient with DDs and the healthcare team including nurses (Balakas et al.,  2015 ). Parents' involvement and the support of multidisciplinary team was key in the development and implementation of the ACP screening tool (Balakas et al.,  2015 ). Parents have unique knowledge about their child's likes and dislikes, and what strategies to adopt to help calm their child and, therefore, are essential for care delivery in the emergency department (Zwaigenbaum et al.,  2016 ). Showing positive regard to family caregivers for their role and knowledge about the person with DDs' health, medical history, needs and behaviour and communicating with caregivers about type of accommodations that might be beneficial for their child with DDs proved fruitful (Friese & Ailey,  2015 ; Halpin & Nugent,  2007 ). Families and caregivers require ongoing support as they are integral to the wellbeing of people with intellectual disabilities (Halpin & Nugent,  2007 ). While caregiving is a huge physical and psychological burden and can adversely affect caregiver's ability to provide effective care, involving parents in providing a calming environment and training teamwork and collaboration can facilitate nursing care (Zwaigenbaum et al.,  2016 ).

By coordinating care with formal care systems and residential placement facilities nurses can support the care of youth with DDs transitioning between inpatient treatment and healthy living in the community (Ndengeyingoma & Ruel,  2016 ). The community DDs nurses (as transformational leaders) can play a vital role to reduce care deficiencies by coordinating holistic care and encouraging caregivers not having specialist knowledge of certain conditions (Cockburn‐Wells,  2014 ). A holistic approach involving improvements to adults with DDs' (living in supported accommodation) diets and lifestyles, such as exercise, and improving caregivers' understanding of the risk factors (for example, constipation), is recommended (Cockburn‐Wells,  2014 ). Shortfalls in collaboration among educational staff and nursing staff at schools pertaining to students on IEPs resulted in heavy reliance of school nurses on classroom staff for assistance on information on students with IEPs (Singer,  2013 ).

3.3. Emerging recommendations for nursing education, policy and practice

Table  2 summarizes six recommendations emerging from our review for education, policy and practice. These recommendations align with the guiding principles of the United Nations Convention on the Rights of Persons with Disabilities ( 2016 ) and the Accessible Canada Act Bill C‐81 ( 2019 ), which promote the full and equal participation of persons with disabilities in society. The recommendations emphasize that all nurses must be equipped with education and training to have the ability and tools to identify and conduct assessments of clients who have DDs, to apply alternative communication methods, including assistive technology and apply approaches to communicate and collaborate with parents. The findings further highlight the need for employing a nursing quality and performance improvement plan that focuses on increasing the understanding of the unique needs of individuals with DDs, improving communication between clients with DDs, their families and staff.

Recommendations for education, policy and practice on nursing strategies and health promotion interventions

Nurses play a vital role in inter‐professional healthcare teams, supporting and advocating for clients and their families. The revised Canadian Consensus Guidelines for primary care of adults with intellectual and DDs provide recommendations and appropriate modifications to standard practice to enable family physicians and primary‐care providers improve primary‐care and health outcome of this clientele (Sullivan et al., 2018 ). Furthermore, tools to support primary‐care providers implement these guidelines have been developed (Surrey Place,  2020 ). These tools promote preventive care easily overlooked in individuals with DDs, such as immunization, screening and medication reviews. However, in Canada (where we the authors of this review are situated) evidence‐based nursing training and education on providing nursing care for this population are much needed and could have a statistically significant impact on healthcare system change in support of effective and high‐quality nursing care for people with DDs.

4. DISCUSSION

As brought to light by our review and reported by other researchers in the DDs field, multiple challenges impede effective nursing care of people with DDs, including communication barriers (Chew et al.,  2009 ; Ee et al.,  2021 ), limited time to complete tasks that require more time, dearth of staffing with the needed skill mix (Beeber et al.,  2014 ), inadequate education and training on managing individuals with DDs (Ee et al.,  2021 ) and need for more involvement of parents and nurses working with other professionals (Law et al.,  2003 ) including behaviour therapists, occupational therapists (Hines et al.,  2019 ) and speech language pathologists (Auert et al.,  2012 ) when supporting persons with autism. Thompson and colleagues ( 2008 ) report similar findings that nurses' busyness impacted their ability to provide complete nursing care and to find or use resources. Moreover, busyness caused emotional and physical strain and sacrifice of nurses' personal time (Thompson et al.,  2008 ).

The highest importance in the training of healthcare professionals working with people with developmental disabilities is situated in the professionals' competence experiences and comfort (Smith et al.,  2021 ). Curricular changes (at educational institutions) are required so nurses are better equipped to take on this very important role. These include providing nurses educational and training resources and using a multi‐level and multidisciplinary approach to capacity‐building. Although developments, such as the model of specialist nursing care in United Kingdom have been observed, transformation on the education, training and recruitment of nurses in the care of people with developmental disabilities is much needed in other countries (Wilson et al.,  2022 ).

The complexity of providing nursing care to individuals with DDs can be further addressed through organizational and workforce development. The World Health Organization emphasizes that to address health disparities it is essential to enhance the development of human resources, such as nursing workforce, which can improve access to services and supports for marginalized and vulnerable populations (e.g., individuals with DDs) (World Health Orgnization,  2016 ). This review has made visible the challenges and barriers in providing nursing care to people with DDs, the need for support in nursing training and education in the DDs field, and collaborative and organizational approaches to enhance nursing care. Our review further underscores that nursing interventions/ strategies for people with DDs are underdeveloped, with few practice guidelines available and developed. There is also a scarceness of research examining the effectiveness of nursing interventions to improve health outcomes and health care access for people with DDs.

A multidisciplinary and team‐oriented approach is important. For example, health professionals such as behaviour therapists are key in supporting autistic persons. They are educationally prepared to assist nurses in understanding the appropriate techniques to mitigate challenging behaviours observed in autistic persons. Parents are also key in supporting autistic persons and learning the appropriate mitigating behaviour techniques. Behaviour therapists train and educate parents in those techniques and work with them either in the home, or now via Zoom and virtual media.

4.1. Differential impact of the pandemic on persons with DDs

Our narrative review focussed on published literature prior to the pandemic, given the statistically significantly different pre‐pandemic health context. However, it is prudent to note the impacts of the ongoing pandemic on persons with DDs. The current COVID‐19 pandemic has magnified the gaps and disparities in health outcomes of vulnerable populations around the world. Growing evidence indicates that marginalized populations are at an increased risk of COVID‐19 related morbidity and mortality outcomes. People with mental health and developmental disabilities face multiple social and economic barriers, which further exacerbate risks to their health. There is evidence that rates of complications and death due to COVID‐19 infection have been higher among people with DDs than in the rest of the population (Shapiro,  2020 ) especially for those living in residential settings (Landes et al.,  2021 ).

Pandemic‐related directives such as self‐isolation and physical distancing and intermittent provision of health care and services (Armitage & Nellums,  2020 ) and medical rationing (Andrews et al.,  2020 ) have impacted this population more than the general population. Developmental disabilities nurses dedicated more time assisting people with varying DDs (and their families) in understanding and coping with the pandemic‐related social changes such as social distancing, not having visitors, changes in daily routine, not being able to attend day programs (Desroches et al.,  2021 ). Most importantly, the pandemic has exposed that level of skilled nursing care for people receiving DD services is associated with COVID‐19 outcomes (Landes et al.,  2021 ).

There have been calls to respect the basic human rights of people with DDs and to adopt a disability lens approach to COVID‐19 initiatives to population health (Spagnuolo & Orsini,  2020 ). The WHO ( 2020 ), the Government of Canada through the Public Health Agency of Canada (Government of Canada,  2020 ), Ontario Human Rights Commission (Ontario Human Rights Commission, n.d. ), disability organizations and scholars have urged healthcare and public health systems to recognize, prepare and address the differentiated impact the pandemic is having on vulnerable sectors of the population (Spagnuolo & Orsini,  2020 ). Taken together, it is being stressed that public and health workers must ensure vulnerable groups have: (i) access to non‐discriminatory health care; (ii) continuity of caregiving support; (iii) timely access to information in accessible formats and language related to COVID‐19; and (iv) access to vital public health; and free of stigma and discrimination (such as racism, ageism, ableism) in relation to COVID‐19.

4.2. Limitations

We recognize several limitations to our review. First, we applied a narrative review approach and, therefore, limited our examination to readily available literature. However, we have documented the process of study selection in detail and conducted the review with several team members to enhance reliability of decision making in study selection, and information extraction and synthesis. Second, the findings are based on studies available in English only, so are linguistically specific. Third, the studies included in the review had different research designs, and we did not apply an evaluation of strength of design in study selection. However, we believe learning from across study designs is informative to enhance nursing education in the DDs field. Finally, the findings from our review are specific to several English‐speaking countries and may not relate closely to nursing care for people with DDs as practiced in other countries; however, we believe our recommendations can be relevant broadly to nursing educational and training settings.

5. CONCLUSION

Families with DDs face systemic disadvantages across the social determinants of health and interlocking barriers to health care that place them at a high risk for poor health outcomes. It is timely and crucial to generate evidence about effective strategies to educate, train and support nurses to develop their competencies in the delivery of quality health care for people with DDs in all sectors of the health and social care systems. We have highlighted some of the competencies (e.g., removing communication barriers) and professional supports (e.g., staff with skill mix) nurses need to care for people with DDs. We provide recommendations addressing access, education, collaboration, communication, use of standardized tools and creating a safe environment.

AUTHOR CONTRIBUTIONS

Nazilla Khanlou conceptualized the project and design of the study and supervised all aspects of this work. Attia Khan implemented the research. Attia Khan and Luz Maria Vazquez contributed to the analysis of the results and to the writing of the manuscript. All authors discussed the results and contributed to the final manuscript.

FUNDING INFORMATION

This work was supported by the Faculty of Health ‐ Minor Research Grant, York University, ON, Canada, granted to the first author (Nazilla Khanlou) as principal investigator. The fourth author (Rani Srivastava) was a coinvestigator on the project.

CONFLICT OF INTEREST

No conflict of interest is declared by the authors.

ACKNOWLEDGEMENT

We are grateful for the assistance of Amirtha Karunakaran and Sheena Madzima in review of the literature.

Khanlou, N. , Khan, A. , Kurtz Landy, C. , Srivastava, R. , McMillan, S. , VanDeVelde‐Coke, S. , & Vazquez, L. M. (2023). Nursing care for persons with developmental disabilities: Review of literature on barriers and facilitators faced by nurses to provide care . Nursing Open , 10 , 404–423. 10.1002/nop2.1338 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]

1 A law to include children with disabilities in public school settings and provide them free and appropriate services.

2 Social stories provide context of an experience in pictures / images to help a child with ASD understand what will happen for particular visits and to make the visit physically, socially and emotionally safe.

DATA AVAILABILITY STATEMENT

  • American Psychiatric Association . (2013). Diagnostic and statistical manual of mental disorders (DSM‐5) . [ Google Scholar ]
  • Anderson, L. L. , Humphries, K. , McDermott, S. , Marks, B. , Sisirak, J. , & Larson, S. (2013). The state of the science of health and wellness for adults with intellectual and developmental disabilities . Intellectual and Developmental Disabilities , 51 ( 5 ), 385–398. [ PMC free article ] [ PubMed ] [ Google Scholar ]
  • Andrews, E. E. , Ayers, K. B. , Brown, K. S. , Dunn, D. S. , & Pilarski, C. R. (2020). No body is expendable: Medical rationing and disability justice during the COVID‐19 pandemic . American Psychologist . Advance online publication. 10.1037/amp0000709 [ PubMed ] [ CrossRef ] [ Google Scholar ]
  • Arim, R. (2015). A profile of persons with disabilities among Canadians aged 15 years or older, 2012. Canadian survey on disability, 2012 . Statistic Canada Catalogue No. 89‐654‐X. https://www150.statcan.gc.ca/n1/en/pub/89‐654‐x/89 [ Google Scholar ]
  • Armitage, R. , & Nellums, L. B. (2020, March 17). The COVID‐19 response must be disability inclusive . The Lancet Public Health , 5 ( 5 ), e257. 10.1016/S2468-2667(20)30076-1 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
  • Auert, E. J. , Trembath, D. , Arciuli, J. , & Thomas, D. (2012). Parents' expectations, awareness, and experiences of accessing evidence‐based speech‐language pathology services for their children with autism . International Journal of Speech‐Language Pathology , 14 ( 2 ), 109–118. 10.3109/17549507.2011.652673 [ PubMed ] [ CrossRef ] [ Google Scholar ]
  • Balakas, K. , Gallaher, C. S. , & Tilley, C. (2015). Optimizing perioperative care for children and adolescents with challenging behaviors . MCN: The American Journal of Maternal/Child Nursing , 40 ( 3 ), 153–159. [ PubMed ] [ Google Scholar ]
  • Beeber, A. S. , Zimmerman, S. , Reed, D. , Mitchell, C. M. , Sloane, P. D. , Harris‐Wallace, B. , Perez, R. , & Schumacher, J. G. (2014). Licensed nurse staffing and health service availability in residential care and assisted living . Journal of the American Geriatrics , 62 ( 5 ), 805–811. 10.1111/jgs.12786 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
  • Bernardo, W. M. , Nobre, M. C. , & Jatene, F. B. (2004). Evidence based clinical practice: Part II‐searching evidence databases . Revista da Associação Médica Brasileira , 50 ( 1 ), 104–108. [ PubMed ] [ Google Scholar ]
  • Betz, C. (2007). Facilitating the transition of adolescents with developmental disabilities: Nursing practice issues and care . Journal of Pediatric Nursing , 22 ( 2 ), 103–115. [ PubMed ] [ Google Scholar ]
  • Bill C‐81 . (2019, June 21). An act to ensure a barrier‐free Canada . Parliament of Canada. https://www.parl.ca/DocumentViewer/en/42‐1/bill/C‐81/royal‐assent [ Google Scholar ]
  • Boylan, J. , & Ing, P. (2005). ‘Seen but not heard’—Young people's experience of advocacy . International Journal of Social Welfare , 14 ( 1 ), 2–12. [ Google Scholar ]
  • Centers for Disease Control and Prevention . (2017). Developmental disabilities . National Center on Birth Defects and Developmental Disabilities. https://www.cdc.gov/ncbddd/developmentaldisabilities/index.html [ Google Scholar ]
  • Cheak‐Zamora, N. C. , & Teti, M. (2015). “You think it's hard now … it gets much harder for our children”: Youth with autism and their caregiver's perspectives of health care transition services . Autism , 19 ( 8 ), 992–1001. [ PubMed ] [ Google Scholar ]
  • Chew, K. L. , Iacono, T. , & Tracy, J. (2009). Overcoming communication barriers: Working with patients with intellectual disabilities . Australian Family Physician , 38 ( 1/2 ), 10–14. [ PubMed ] [ Google Scholar ]
  • Chiri, G. , & Warfield, M. E. (2012). Unmet need and problems accessing core health care services for children with autism spectrum disorder . Maternal Child Health Journal , 16 ( 5 ), 1081–1091. [ PubMed ] [ Google Scholar ]
  • Cieza, A. (2015). Preface. In Hatton C. & Emerson E. (Eds.), International review of research in developmental disabilities: Health disparities and intellectual disabilities (pp. xi–xiv). Elsevier Inc. [ Google Scholar ]
  • Cockburn‐Wells, H. (2014). Managing constipation in adults with severe learning disabilities . Learning Disability Practice , 17 ( 9 ), 16‐22. 10.7748/Idp.17.9.16.e1582 [ CrossRef ] [ Google Scholar ]
  • Cooper, S. , Morrison, J. , Melville, C. , Finlayson, J. , Allan, L. , & Martin, G. (2006). Improving the health of people with intellectual disabilities: Outcomes of a health screening programme after one year . JIDR , 50 ( 9 ), 667–677. 10.1111/j.1365-2788.2006.00824.x [ PubMed ] [ CrossRef ] [ Google Scholar ]
  • Crane, L. , Adams, F. , Harper, G. , Welch, J. , & Pellicano, E. (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England . Autism , 23 ( 2 ), 477–493. [ PubMed ] [ Google Scholar ]
  • Davies, P. (2000). The relevance of systematic reviews to educational policy and practice . Oxford Review of Education , 26 ( 3–4 ), 365–378. [ Google Scholar ]
  • Desroches, M. L. , Fisher, K. , Ailey, S. , & Stych, J. (2021). “We were absolutely in the dark”: Latent analysis of developmental disability nurses' experiences during the COVID‐19 pandemic . Global Qualitative Nursing Research , 8 , 23333936211051705. [ PMC free article ] [ PubMed ] [ Google Scholar ]
  • Drake, J. , Johnson, N. , Stoneck, A. V. , Martinez, D. M. , & Massey, M. (2012). Evaluation of a coping kit for children with challenging behaviors in a pediatric hospital . Pediatric Nursing , 38 ( 4 ), 215–221. [ PubMed ] [ Google Scholar ]
  • Ee, J. , Stenfert Kroese, B. , & Rose, J. (2021). Experiences of mental health professionals providing services to adults with intellectual disabilities and mental health problems: A systematic review and meta‐synthesis of qualitative research studies . Journal of Intellectual Disabilities , 1–24. 10.1177/17446295211016182 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
  • Emerson, E. , Hatton, C. , Robertson, J. , Baines, S. , Evison, F. , & Glover, G. (2012). People with learning disabilities in England 2011 . Improving Health & Lives: Learning Disabilities. [ Google Scholar ]
  • Fisher, K. (2004). Health disparities and mental retardation . Journal of Nursing Scholarship , 36 ( 1 ), 48–53. [ PubMed ] [ Google Scholar ]
  • Fisher, K. , Robichaux, C. , Sauerland, J. , & Stokes, F. (2020). A nurses' ethical commitment to people with intellectual and developmental disabilities . Nursing Ethics , 27 ( 4 ), 1066–1076. 10.1177/0969733019900310 [ PubMed ] [ CrossRef ] [ Google Scholar ]
  • Ford, M. (2020, February 3). Work pressures ‘pose barrier’ to compassionate learning disability care . https://www.nursingtimes.net/news/learning‐disability/work‐pressures‐pose‐barrier‐to‐compassionate‐learning‐disability‐care‐03‐02‐2020/ [ Google Scholar ]
  • Friese, T. , & Ailey, S. (2015). Specific standards of care for adults with intellectual disabilities . Nursing Management , 22 ( 1 ), 32–37. 10.7748/nm.22.1.32.e1296 [ PubMed ] [ CrossRef ] [ Google Scholar ]
  • Gardner, M. R. , Suplee, P. D. , & Jerome‐D'Emilia, B. (2016). Survey of nursing faculty preparation for teaching about autism spectrum disorders . Nurse Educator , 41 ( 4 ), 212–216. [ PubMed ] [ Google Scholar ]
  • Giarelli, E. , & Gardner, M. R. (2012). Nursing of autism spectrum disorder . Springer Publishing Co. [ Google Scholar ]
  • Government of Canada . (2020, October 1). Vulnerable populations and COVID‐19 . https://www.canada.ca/en/public‐health/services/publications/diseases‐conditions/vulnerable‐populations‐covid‐19.html [ Google Scholar ]
  • Green, B. N. , Johnson, C. D. , & Adams, A. (2006). Writing narrative literature reviews for peer‐reviewed journals: Secrets of the trade . Journal of Chiropractic Medicine , 5 ( 3 ), 101–117. [ PMC free article ] [ PubMed ] [ Google Scholar ]
  • Hahn, J. E. (2003). Addressing the need for education: Curriculum development for nurses about intellectual and developmental disabilities . Nursing Clinics , 38 ( 2 ), 185–204. [ PubMed ] [ Google Scholar ]
  • Halpin, J. , & Nugent, B. (2007). Health visitors' perceptions of their role in autism spectrum disorder . Community Practitioner , 80 ( 1 ), 18–22. [ PubMed ] [ Google Scholar ]
  • Hamdani, Y. , & Lunsky, Y. (2016). Health and health service use of youth and young adults with intellectual and developmental disabilities . Current Developmental Disorders Reports , 3 ( 2 ), 97–103. [ Google Scholar ]
  • Harris‐Kojetin, L. , Sengupta, M. , Park‐Lee, E. , Valverde, R. , Caffrey, C. , Rome, V. , & Lendon, J. (2016). Long‐term care providers and services users in the United States: Data from the National Study of Long‐Term Care Providers, 2013–2014 . Vital & Health Statistics. Series 3, Analytical and Epidemiological Studies , 38 ( x–xii ), 1–105. [ PubMed ] [ Google Scholar ]
  • Hemsley, B. , Balandin, S. , & Worrall, L. (2012). Nursing the patient with complex communication needs: Time as a barrier and a facilitator to successful communication in hospital . Journal of Advanced Nursing , 68 ( 1 ), 116–126. [ PubMed ] [ Google Scholar ]
  • Hines, M. , Bulkeley, K. , Dudley, S. , Cameron, S. , & Lincoln, M. (2019). Delivering quality allied health services to children with complex disability via telepractice: Lessons learned from four case studies . Journal of Developmental and Physical Disabilities , 31 ( 5 ), 593–609. [ Google Scholar ]
  • Janssen, C. , Schuengel, C. , & Stolk, J. (2002). Understanding challenging behaviour in people with severe and profound intellectual disability: A stress‐attachment model . Journal of Intellectual Disability Research , 46 ( 6 ), 445–453. [ PubMed ] [ Google Scholar ]
  • Johnson, N. L. , Lashley, J. , Stonek, A. V. , & Bonjour, A. (2012). Children with developmental disabilities at a pediatric hospital: Staff education to prevent and manage challenging behaviors . Journal of Pediatric Nursing , 27 ( 6 ), 742–749. [ PubMed ] [ Google Scholar ]
  • Kirby, S. , & Hegarty, J. (2010). Breast awareness within an intellectual disability setting . European Journal of Oncology Nursing , 14 ( 4 ), 328–336. [ PubMed ] [ Google Scholar ]
  • Kokina, A. , & Kern, L. (2010). Social story™ interventions for students with autism spectrum disorders: A meta‐analysis . Journal of Autism and Developmental Disorders , 40 ( 7 ), 812–826. [ PubMed ] [ Google Scholar ]
  • Krahn, G. , Hammond, L. , & Turner, A. (2006). A cascade of disparities: Health and health care access for people with intellectual disabilities . Mental Retardation and Developmental Disabilities Research Reviews , 12 ( 1 ), 70–82. [ PubMed ] [ Google Scholar ]
  • Landes, S. D. , Turk, M. A. , & Wong, A. W. (2021). COVID‐19 outcomes among people with intellectual and developmental disability in California: The importance of type of residence and skilled nursing care needs . Disability and Health Journal , 14 ( 2 ), 101051. [ PMC free article ] [ PubMed ] [ Google Scholar ]
  • Law, M. , Hanna, S. , King, G. , Hurley, P. , King, S. , Kertoy, M. , & Rosenbaum, P. (2003). Factors affecting family‐centred service delivery for children with disabilities . Child Care Health and Developement , 29 ( 5 ), 357–366. 10.1046/j.1365-2214.2003.00351.x [ PubMed ] [ CrossRef ] [ Google Scholar ]
  • Lin, E. , Balogh, R. , Durbin, A. , Holder, L. , Gupta, N. , Volpe, T. , & Lunsky, Y. (2019). Addressing gaps in the health care services used by adults with developmental disabilities in Ontario . ICES; Observatory. [ Google Scholar ]
  • Macdonald, S. , Morrison, J. , Melville, C. , Baltzer, M. , MacArthur, L. , & Cooper, S. (2018). Embedding routine health checks for adults with intellectual disabilities in primary care: Practice nurse perceptions . Journal of Intellectual Disability Research , 62 ( 4 ), 349–357. [ PubMed ] [ Google Scholar ]
  • Mandal, I. , Basu, I. , & De, M. (2020). Role of nursing professionals in making hospital stay effective and less stressful for patients with ASD: A brief overview . International Journal of Advancement in Life Sciences Research , 3 ( 1 ), 1–9. [ Google Scholar ]
  • Marks, B. , & Sisirak, J. (2017). Nurse practitioners promoting physical activity: People with intellectual and developmental disabilities . The Journal for Nurse Practitioners , 13 ( 1 ), e1–e5. [ Google Scholar ]
  • Marks, B. , Sisirak, J. , & Hsieh, K. (2008). Health services, health promotion, and health literacy: Report from the state of the science in aging with developmental disabilities conference . Disability and Health Journal , 1 ( 3 ), 136–142. [ PubMed ] [ Google Scholar ]
  • McIntosh, C. E. , Gundlach, J. , Brelage, P. , & Snyder, S. (2018). School nurses increasing the compliance of hygiene routines for students with autism spectrum disorder . NASN School Nurse , 33 ( 5 ), 319–323. [ PubMed ] [ Google Scholar ]
  • Melville, C. , Finlayson, J. , Cooper, S. , Allan, L. , Robinson, N. , Burns, E. , & Morrison, J. (2005). Enhancing primary health care services for adults with intellectual disabilities . Journal of Intellectual Disability Research , 49 ( 3 ), 190–198. [ PubMed ] [ Google Scholar ]
  • Morris, S. , Fawcett, G. , Brisebois, L. , & Hughes, J. (2018). Canadian survey on disability: A demographic, employment and income profile of Canadians with disabilities aged 15 years and over, 2017. Catalogue No. 89‐654‐X2018002 . Statistics Canada. [ Google Scholar ]
  • Narayanasamy, A. , Gates, B. , & Swinton, J. (2002). Spirituality and learning disabilities: A qualitative study . British Journal of Nursing , 11 ( 14 ), 948–957. [ PubMed ] [ Google Scholar ]
  • Ndengeyingoma, A. , & Ruel, J. (2016). Nurses' representations of caring for intellectually disabled patients and perceived needs to ensure quality care . Journal of Clinical Nursing , 25 ( 21–22 ), 3199–3208. [ PubMed ] [ Google Scholar ]
  • Ontario Human Rights Commission . (n.d). Actions consistent with a human rights‐based approach to managing the COVID‐19 pandemic . Queen's Printer for Ontario. http://www.ohrc.on.ca/en/actions‐consistent‐human‐rights‐based‐approach‐managing‐covid‐19‐pandemic [ Google Scholar ]
  • Raemy, S. , & Paignon, A. (2019). Providing equity of care for patients with intellectual and developmental disabilities in Western Switzerland: A descriptive intervention in a university hospital . International Journal for Equity in Health , 18 ( 1 ), 46. [ PMC free article ] [ PubMed ] [ Google Scholar ]
  • Scarpinato, N. , Bradley, J. , Kurbjun, K. , Bateman, X. , Holtzer, B. , & Ely, B. (2010). Caring for the child with an autism spectrum disorder in the acute care setting . Journal for Specialists in Pediatric Nursing , 15 ( 3 ), 244–254. [ PubMed ] [ Google Scholar ]
  • Scheepers, M. , Kerr, M. , O'Hara, D. , Bainbridge, D. , Cooper, S. , Davis, R. , Fujiura, G. , Heller, T. , Holland, A. , Krahn, G. , Lennox, N. , Meaney, J. , & Wehmeyer, M. (2005). Reducing health disparity in people with intellectual disabilities: A report from health issues special interest research Group of the International Association for the scientific study of intellectual disabilities . Journal of Policy and Practice in Intellectual Disabilities , 2 , 249–255. [ Google Scholar ]
  • Schieve, L. A. , Gonzalez, V. , Boulet, S. L. , Visser, S. N. , Rice, C. E. , Braun, K. N. , & Boyle, C. A. (2012). Concurrent medical conditions and health care use and needs among children with learning and behavioral developmental disabilities, National Health Interview Survey, 2006–2010 . Research in Developmental Disabilities , 33 ( 2 ), 467–476. [ PubMed ] [ Google Scholar ]
  • Services and Support to Promote the Social Inclusion of Persons with Developmental Disabilities Act, 2008, S.O. 2008, c. 14 . (2019, July 1). Ontario e‐Laws. https://www.ontario.ca/laws/statute/08s14 [ Google Scholar ]
  • Shapiro, J. (2020, June 9). COVID‐19 infections and deaths are higher among those with intellectual disabilities . National Public Radio: Special Series. The Coronavirus Crisis. https://www.npr.org/2020/06/09/872401607/covid‐19‐infections‐and‐deaths‐are‐higher‐among‐those‐with‐intellectual‐disabili?fbclid=IwAR2kttqSJDPnE3Xf2pW5l‐SnPa6PMSk0Eg_xhqFpasX8UlmJlhWE‐OG2iWg [ Google Scholar ]
  • Sheerin, F. K. (2008). Diagnosis and interventions pertinent to intellectual disability nursing . International Jounal of Nursing Terminologies and Classifications , 19 ( 4 ), 140–149. [ PubMed ] [ Google Scholar ]
  • Singer, B. (2013). Perceptions of school nurses in the care of students with disabilities . The Journal of School Nursing , 29 ( 5 ), 329–336. [ PubMed ] [ Google Scholar ]
  • Smeltzer, S. C. , Avery, C. , & Haynor, P. (2012). Interactions of people with disabilities and nursing staff during hospitalization . The American Journal of Nursing , 112 ( 4 ), 30–37. [ PubMed ] [ Google Scholar ]
  • Smith, S. E. , McCann, H. P. , Urbano, R. C. , Dykens, E. M. , & Hodapp, R. M. (2021). Training healthcare professionals to work with people with intellectual and developmental disabilities . Intellectual and Developmental Disabilities , 59 ( 6 ), 446–458. [ PubMed ] [ Google Scholar ]
  • Spagnuolo, N. , & Orsini, M. (2020, March 29). COVID‐19 visitation bans for people in institutions put many at risk in other ways. Canada . https://www.cbc.ca/news/opinion/opinion‐covid‐19‐public‐health‐institutions‐risk‐1.5510546 [ Google Scholar ]
  • Statistics Canada . (2020, November 12). Table 13‐10‐0376‐01 type of disability for persons with disabilities aged 15 years and over, by age group and sex, Canada, provinces and territories . 10.25318/1310037601-eng [ CrossRef ] [ Google Scholar ]
  • Sullivan, W. , Berg, J. , Bradley, E. , Cheetham, T. , Denton, R. , Heng, J. , & Lunsky, Y. (2011). Primary care of adults with developmental disabilities: Canadian consensus guidelines . Canadian Family Physician , 57 ( 5 ), 541–553. [ PMC free article ] [ PubMed ] [ Google Scholar ]
  • Sullivan, W. F. , Diepstra, H. , Heng, J. , Ally, S. , Bradley, E. , Casson, I. , Hennen, B. , Kelly, M. , Korossy, M. , McNeil, K. , Abells, D. , Amaria, K. , Boyd, K. , Gemmill, M. , Grier, E. , Kennie‐Kaulbach, N. , Ketchell, M. , Ladouceur, J. , Lepp, A. , … Witherbee, S. (2018). Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidleines . Canadian Family Physician , 64 ( 40 ), 254–279. [ PMC free article ] [ PubMed ] [ Google Scholar ]
  • Surrey Place . (2020). Tools for the primary care of adults with intellectual and developmental disabilities . https://ddprimarycare.surreyplace.ca/tools‐2/ [ Google Scholar ]
  • Thapar, A. , Cooper, M. , & Rutter, M. (2017). Neurodevelopmental disorders . The Lancet Psychiatry , 4 ( 4 ), 339–346. 10.1016/S2215-0366(16)30376-5 [ PubMed ] [ CrossRef ] [ Google Scholar ]
  • Thomas, K. , Bourke, J. , Girdler, S. , Bebbington, A. , Jacoby, P. , & Leonard, H. (2011). Variation over time in medical conditions and health service utilization of children with Down syndrome . Journal of Pediatrics , 158 ( 2 ), 194–200.e1. [ PubMed ] [ Google Scholar ]
  • Thompson, D. S. , O'Leary, K. , Jensen, E. , Scott‐Findlay, S. , O'Brien‐Pallas, L. , & Estabrooks, C. A. (2008). The relationship between busyness and research utilization: It is about time . Journal of Clinical Nursing , 17 ( 4 ), 539–548. [ PubMed ] [ Google Scholar ]
  • Tricco, A. C. , Lillie, E. , Zarin, W. , O'Brien, K. K. , Colquhoun, H. , Levac, D. , Moher, D. , Peters, M. D. J. , Horsley, T. , Weeks, L. , Hempel, S. , Akl, E. A. , Chang, C. , McGowan, J. , Stewart, L. , Hartling, L. , Aldcroft, A. , Wilson, M. G. , Garritty, C. , … Straus, S. E. (2018). PRISMA extension for scoping reviews (PRISMA‐ScR): Checklist and explanation . Annals of Internal Medicine , 169 ( 7 ), 467–473. 10.7326/M18-0850 [ PubMed ] [ CrossRef ] [ Google Scholar ]
  • Tyrer, F. , McGrother, C. , Thorp, C. , Donaldson, M. , Bhaumik, S. , Watson, J. , & Hollin, C. (2006). Physical aggression towards others in adults with learning disabilities: Prevalence and associated factors . Journal of Intellectual Disability Research , 50 ( 4 ), 295–304. [ PubMed ] [ Google Scholar ]
  • United Nations Convention on the Rights of Persons with Disabilities . (2016). Guidelines on periodic reporting to the Committee on the Rights of Persons with Disabilities, including under the simplified reporting procedures . www.betheljada.org/images/pdf/Suriname_CRPD_training_Session_4_Reporting_Guidlines‐Handout [ Google Scholar ]
  • Weiss, J. A. , Lunsky, Y. , & Morin, D. (2010). Psychology graduate student training in developmental disability: A Canadian survey . Canadian Psychology/Psychologie Canadienne , 51 ( 3 ), 177–184. [ Google Scholar ]
  • Wilson, N. J. , Rees, S. , Northway, R. , & Lewis, P. (2022). Toward mainstream nursing roles specialising in the care of people with intellectual and developmental disability . Collegian . 10.1016/j.colegn.2022.03.004 [ CrossRef ] [ Google Scholar ]
  • World Health Organization . (2020, March 26). Disability considerations during the COVID‐19 outbreak . https://www.who.int/publications/i/item/WHO‐2019‐nCoV‐Disability‐2020‐1 [ Google Scholar ]
  • World Health Orgnization . (2016). Global strategy on human resources for health: Workforce 2030 . https://apps.who.int/iris/bitstream/handle/10665/250368/9789241511131‐eng.pdf?sequence=1 [ Google Scholar ]
  • Zwaigenbaum, L. , Nicholas, D. B. , Muskat, B. , Kilmer, C. , Newton, A. S. , Craig, W. R. , Ratnapalan, S. , Cohen‐Silver, J. , Greenblatt, A. , Roberts, W. , & Sharon, R. (2016). Perspectives of health care providers regarding emergency department care of children and youth with autism spectrum disorder . Journal of Aurism and Developmental Disorders , 46 ( 5 ), 1725–1736. 10.1007/s10803-016-2703-y [ PubMed ] [ CrossRef ] [ Google Scholar ]
  • Open access
  • Published: 24 February 2024

Mapping awareness-raising and capacity-building materials on developmental disabilities for non-specialists: a review of the academic and grey literature

  • Elisa Genovesi 1 ,
  • Yuan Ishtar Yao 1 ,
  • Emily Mitchell 1 ,
  • Michal Arad 1 ,
  • Victoria Diamant 1 ,
  • Areej Panju 1 ,
  • Charlotte Hanlon 2 , 3 , 4 ,
  • Bethlehem Tekola 1 &
  • Rosa A. Hoekstra 1  

International Journal of Mental Health Systems volume  18 , Article number:  10 ( 2024 ) Cite this article

Metrics details

Most children with developmental disabilities (DD), such as intellectual disabilities and autism, live in low- and middle-income countries (LMICs), where services are usually limited. Various governmental, non-governmental and research organisations in LMICs have developed awareness-raising campaigns and training and education resources on DD in childhood relevant to LMICs. This study aimed to comprehensively search and review freely available materials in the academic and grey literature, aimed at awareness raising, training and education on DD among non-specialist professionals and community members in LMICs. We consulted 183 experts, conducted key-word searches in five academic databases, four grey-literature databases and seventeen customised Google search engines. Following initial screening, we manually searched relevant systematic reviews and lists of resources and conducted forwards and backwards citation checks of included articles. We identified 7327 articles and resources after deduplication. We then used a rigorous multi-step screening process to select 78 training resources on DD relevant to LMICs, of which 43 aimed at informing and/or raising awareness DD, 16 highlighted specific strategies for staff in health settings and 19 in education settings. Our mapping analysis revealed that a wealth of materials is available for both global and local use, including comics, children’s books, flyers, posters, fact sheets, blogs, videos, websites pages, social media channels, handbooks and self-education guides, and training programmes or sessions. Twelve resources were developed for cross-continental or global use in LMICs, 19 were developed for and/or used in Africa, 23 in Asia, 24 in Latin America. Most resources were developed within the context where they were intended to be used. Identified gaps included a limited range of resources on intellectual disabilities, manuals for actively delivering training to staff in education settings and resources targeted at eastern European LMICs: future intervention development and adaptation efforts should address such gaps, to ensure capacity building materials exist for a sufficient variety of DD, settings and geographical areas. Beyond identifying these gaps, the value of the review lies in the compilation of summary tables of information on all freely available resources found, to support their selection and use in wider contexts. Information on the resource content, country of original development and copyright is provided to facilitate resource sharing and uptake.

Developmental disabilities (DD), such as intellectual disabilities and autism, are conditions associated to lifelong difficulties in communication and/or cognition [ 37 ]. Most children with DD Footnote 1 live in low- and middle-income countries (LMICs; [ 21 ], where their needs are often unmet due to a shortage of services. A major barrier to service delivery is the scarce availability of trained professionals and suitable programmes for raising awareness on DD and reducing community stigma [ 2 , 36 ]. A recent review of reviews on autism services suggested that a lack of awareness in the community and health systems [ 1 ] and of culturally appropriate and valid identification tools [ 30 ] causes a “detection gap” in LMICs, whereby signs of autism are undetected or recognised at a later age than in high income countries [ 6 ]. Similarly, the scarcity of specialist services is responsible for a “care gap” [ 25 ], aggravated by limited inclusion in the community and support by community members. This care gap is often due to a lack of appropriate training and stigma on the part of the service provider resulting in poor understanding of the child’s needs and of possible intervention strategies [ 1 , 2 ].

In 2013, the World Health Organization called for an increase in international activities for public awareness raising and capacity building of professionals to better address the needs of children with DD in LMICs [ 36 ]. Capacity building was to be especially directed at non-specialists, as is the case in task-sharing interventions, largely used in global health to increase service provision in the face of scarcity of specialist health practitioners [ 24 ]. Divan et al. [ 6 ] further highlighted the need for training health and social care workers and educators to integrate support services for autism in existing services. Integration of care into various platforms is also recommended to address children’s mental health needs more generally (Kieling et al. 2011). Raising awareness in the broader community is equally important to reduce barriers to inclusion and services for children with DD [ 1 , 2 , 5 , 28 ].

Various governmental, non-governmental and research organisations in several LMICs have developed awareness raising campaigns related to DD, as well as programmes and materials for the education (informational and mostly theoretical learning) and training (practical learning of relevant skills), henceforth referred as training resources. For example, in the Health Education and Training HEAT + project in Ethiopia [ 34 ], audio-visual and written training materials focused on DD were developed and added to a previously used mental health training programme for non-specialist health workers. The mental health manual for health workers “Where there is no psychiatrist” [ 24 ] includes a section on DD, which describes common signs to support identification, as well as providing guidance on referring children to specialised services and supporting caregivers in their child’s care. Similarly, the manual “Educating and caring for children with profound intellectual disability” developed in South Africa as part of the Teacher Empowerment for Disability Inclusion project [ 32 ] can be used to educate schoolteachers on DD and strategies to effectively include children with DD in their teaching practices. The video “Recognising autism” by Sangath in India [ 27 ] is an example of a wide-reaching awareness raising campaign aimed at promoting early detection of autism in the community.

While the development and testing of some training resources have been documented thoroughly (e.g., [ 32 , 34 ]), other materials developed and used by grassroot organisations are less well-known and only available in non-peer-reviewed resources (e.g., [ 12 , 35 ]). These resources are typically developed and used in only one country or region. An effort to document multiple materials appropriate for LMICs from several sources is critical to promote mutual learning across organisations and provide a comprehensive understanding of previously used resources. Such understanding could allow for existing resources to be adapted and implemented in different contexts from where they were originally developed, hence widening the reach of awareness and capacity building interventions and preventing unnecessary duplication of efforts and expense.

The aim of this study was to comprehensively search and review materials in the academic and grey literature that are or can be made freely available, aimed at one or both these functions: i.e. raising awareness of DD among non-specialist professionals and community members in LMICs and/or building their capacity to increase acceptance of children with DD in the community and promote their inclusion in the society and access to services (e.g. health and education services). Grey literature encompasses any document beyond academic articles published in peer-reviewed journals and commercial publications, such as research reports which are not peer-reviewed, as may often be the case for authors and institutions in LMICs with limited capacity to publish through commercial publication routes, as well as policy documents and informational reports, manuals, materials produced for use by non-governmental organisations, web pages, etc. [ 7 ]. Collating these documents for review involves, as well as searching specific databases of grey literature, the exploration of other sources, such as relevant websites, and solicitation of suggestions from experts in the field [ 10 ]. While some of these search methods may be less systematic than academic database searches, including grey literature allows for comprehensiveness in the review, and methodological choices can be made systematically and be rigorous [ 10 ].

We will describe overall patterns and gaps in available materials, and document the main features of the resources identified, in order to provide clear information to organisations and teams who wish to select the most appropriate resource to adapt to their project and context.

Search strategy

The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines [ 23 ] as well as specific guidance for searching grey literature [ 10 ].

The search, conducted between June and October 2021, combined four methods—expert consultations, academic database search, grey literature database search, customised Google search engines—and was supplemented by manual search of relevant systematic reviews and lists of resources and forwards and backwards citation checks of included articles.

The full search strategy, including all terms, is available in Additional file 1 .

Expert consultations

A list of disability and inclusive education experts was compiled, aiming for comprehensive coverage of experts working in LMICs in different continents. Experts were contacted via email with a brief description of the aims of the review and asked to provide suggestions on relevant resources. A follow up email was sent 2–4 weeks after first contact to those who had not replied. We compiled a spreadsheet of all suggestions received, including recommendations of additional experts, whom we then emailed. Of 183 experts contacted in total, 91 replied. These experts made suggestions relating to 162 resources. Eight further resources were suggested by experts within the research team (total n = 170, see Fig.  1 ).

figure 1

PRISMA flow diagram (Moher et al. 2009) of the study selection process

Academic database search

Four academic databases (PsycInfo, MEDLINE, Embase, Global Health) were searched on the Ovid platform and one (ERIC) on the Ebsco platform.

The search utilised search truncated terms for greater comprehensiveness and combined terms related to:

DD and special needs (the latter more general term was included as it is often used to describe disabilities in education settings, excluding technical terms of specific diagnoses)

Training resources

Non-specialist audiences

In Ovid, where multiple databases had been searched simultaneously, results were deduplicated automatically. All records were then exported in Excel from both platforms.

Grey literature database search

Four grey literature databases were searched separately online. Searches adopted slightly different methodologies depending on the structure and content of the database: for example some allowed combining search terms while in others only one term at a time could be searched, some automatically searched plural and singular forms together and in others both forms had to be entered separately, etc. Nonetheless, search strategies aimed for the greatest possible consistency, minimising any differences in search comprehensiveness. While truncation could not be easily used in some of these databases, several relevant variations of search terms were used when the database did not automatically include word variations. Additional file 1 details each search strategy used.

The World Health Organisation IRIS, the UNESCO Library, and Eldis were searched only with DD/ “special needs” terms. APA PsycExtra was searched by combining DD/ “special needs” terms with terms for LMICs, as the database, differently from the previous ones, does not have a clear global focus. All records were exported in Excel.

Customised google searches

The research team drew from experience, expert suggestions, and web searches in order to compile a list of websites of relevant NGOs (e.g., disability NGOs, education NGOs) operating in LMICs, either at country or region level or internationally. Seventeen customised Google engines were then created as follows:

One for World Health Organisation website (who.int)

One for UNICEF website (unicef.org)

One for Autism Speaks website (autismspeaks.org)

Two for 16 Africa-based NGO websites

Two for 12 Latin America-based and 1 Eastern Europe-based NGO websites combined

Three for 16 Asia-based NGO websites

One for 8 international education NGO websites

An additional 60 websites were randomly assigned to 6 more engines

The unequal distribution of websites was carefully planned to avoid getting results only from a small number of highly influential websites. For each engine, several relevant variations of DD/special needs terms combined with OR were entered in the search box and the results, automatically limited by Google to 100 records per engine, were exported manually in Excel.

Screening process

Records were screened in three stages: title (and abstract when available) screening, full-text screening of articles and identification of potentially relevant resources, and finally selection of relevant resources among the ones identified. Some individual records described multiple training resources, leading to 380 resources being extracted from the 348 originally included records (see Fig.  1 ). At all stages, 20% of records were double-screened to define inclusion/exclusion criteria and check for consistency and accuracy in the process. Disagreements were resolved through discussions between reviewers and with the team.

The finalised inclusion criteria used throughout screening of all resources were as follows:

Self-standing resources that can be used for direct (self-)education of non-specialists and aimed at increasing their awareness and inclusion skills, rather than academic knowledge. These include flyers, educational book chapters, manuals, guidelines for non-specialists, online training programmes, websites, etc. These were retrieved separately or identified through studies, initiatives, projects, or project protocols focused on their development, testing, use, implementation or scale-up.

Resources that can be made available openly and freely, while not necessarily being readily and publicly accessible online at the time of the review.

Resources with a non-specialist target audience; for the purpose of this review, specialists are any individuals with a Master’s or specialisation degree, or above qualification, in a discipline relevant to developmental disabilities, including special needs education, paediatrics, mental health and rehabilitation specialisms. The target audience for the current review was anyone without these relevant qualifications, including but not limited to non-specialist teachers, non-specialist health workers and medical doctors and the community at large.

Resources focused on (or including as one of the main modules) a description of characteristics, causes, prognosis etc. of DD or on strategies for including children DD in the community or engaging and educating children with DD in schools. For the purposes of this review, DD include autism, intellectual disabilities, language and social communication disabilities (Stein et al., 2020). We included resources on specific conditions, such as cerebral palsy, consistently associated with intellectual disability and communication difficulties, when the resource was focused on the cognitive and communication challenges rather than associated physical challenges. Resources relevant to developmental delays that are not yet formally clinically diagnosed were also included.

Resources focused on children, infants and toddlers, as defined by the study or resource itself, or relevant to children, infants and toddlers, when no age group was specified.

Resources developed and/or used in a LMIC, as defined by the World Bank Group (2021) or resources that appear to have been developed in high-income countries for global use with a particular focus on LMICs in mind.

The exclusion criteria used were the following:

Literature reviews, situational analyses and general reports or guidelines giving broad directions/indications, rather than informing on diagnostic characteristics, causes, prognosis etc. of DD or on strategies for engaging and educating children with DD in schools/ or supporting children in the community.

Non-manualised training programs or sessions, with any available resources non-specific and not self-standing.

Protocols on intervention development for which the training programme does not yet exist.

Resources aimed at family members to improve their relationships with and/or care for children with DD in their family, or at children with DD themselves.

Resources focused only on training teachers on a very specific strategy not widely applicable to inclusive teaching (e.g., drawing, a specific social game, etc.) or training health workers on a very specific clinical skill (e.g. using an identification checklist), or is relative to a specific period or event (e.g., COVID-19 pandemic), and/or addresses a very specific skill of children with developmental disabilities, e.g., a school intervention aimed at improving autistic children’s spelling ability.

Resources focused only on one or more Specific Learning Disabilities (i.e. dyslexia, dyscalculia, dyspraxia, etc.) that are not one of the key DD previously specified.

Subsequently, resources that were no longer available online upon manuscript submission in April 2023 were removed prior to submission.

Before final extraction of the information, resources were sometimes grouped together (e.g., instead of multiple videos from one social media channel we included the whole channel if it was relevant overall) or split (e.g., in a handbook with several irrelevant chapters and a few relevant distinct chapters we treated each relevant chapter as an individual resource). The following information was extracted for each resource, from the resources themselves and from any articles discussing them in the originally screened records: author, date, country/ies of origin and/or use, format, mode of communication, target audience, content (type of DD, topic), objectives, inclusivity and consideration of culture and context in development, mode and time of delivery and additional implementation features, how the resource was tested, surprising or unusual content and features. The availability of such information varied.

As well as providing a brief summary of each resource, the information extracted was used to give an overview of the available resources in terms of evidence, features, and content, and identify any gaps for future work.

After screening 7327 records and 380 resources, a total of 78 resources were selected, of which 10 were accompanied by at least one research report or media article retrieved in the search. Information on the resources identified in each phase is reported in the PRISMA flow diagram [ 23 ] in Fig.  1 . The tables provide a summary of extracted information for each resource, distinguishing among those providing general information on DDs and inclusion and/or aimed at raising awareness (Table  1 ; 43 resources), and those highlighting specific strategies for staff in health settings (Table  2 ; 16 resources) and education settings (Table  3 ; 19 resources). Additional file 2 provides more detailed information on such resources.

The resources were developed for a range of audiences. Resources listed in Table  1 were primarily directed at the general public or a range of audiences, comprising teachers, health staff and community or religious leaders. Resources in Table  2 mostly targeted non-specialist health workers, including community health workers, general health workers and community childcare workers; some targeted community rehabilitation workers. The education resources (Table  3 ) targeted a wider range of audiences, including mainstream schoolteachers, parents, school management and community workers.

Three resources were awareness-raising comics or children’s books, 5 were flyers/posters, 2 were fact sheets, 3 were blogs, 6 were videos or video series, 13 were website pages or social media channels featuring several relevant videos (8 resources), flyers/posters (1 resource) or blogs and fact sheets (4 resources). Thirty-two resources were handbooks and self-education guides, one of which could also be used to facilitate a training programme. Of 14 other training programmes or sessions, 1 was an online programme with fully open access, 4 were modules on an interactive app and 9 were to be delivered in person synchronously: for the latter category, the resources retrieved were training manuals, 3 of which had additional materials (e.g., slides).

The comics, children’s books and 10 handbooks focused on reducing stigma in the community or providing health and education workers and community members with general strategies for inclusion. All other handbooks and guides were aimed at teaching strategies to workers in health and education settings and were by far the most common format in this category (accounting for almost the entirety of Tables  2 and 3 ). Most webpages, videos, and flyers/posters raised awareness on signs, features, and support strategies in multiple stakeholder groups, often including the general public (Table  1 ).

Around 70% (55 out of 78) of resources had a clear focus on one specific DD. Of these, 41 focused on autism, 10 on intellectual disabilities, 3 on language and communication difficulties, and 1 on epilepsy. Sixteen resources addressed multiple DD, sometimes in combination with other childhood psychosocial disabilities, with specific learning disabilities, or with motor disorders related to conditions, such as cerebral palsy, that are also associated with intellectual disability. Seven resources addressed disabilities more broadly, with relevant sections on autism, intellectual disabilities, and sometimes other DD, such as behavioural and communication disabilities. Most resources taking the latter approach (5) were handbooks or guides for education settings, aimed at including children with disabilities in education. Most resources targeted a wide age range spanning childhood; only a minority of resources focused specifically on early childhood or infancy.

Nineteen resources were developed for and/or used in Africa (mostly Ethiopia and South Africa), 23 in Asia (mostly India and Bangladesh), 24 in Latin America (mostly Argentina and Brazil): all of these except 5 were developed within the context where they were intended to be used, most often by or in partnership with local organisations and experts, and efforts to contextualise to the setting and culture were usually apparent. Twelve resources were developed for cross-continental or global use, although with particular attention to LMICs, as required by our criteria: these were often published by the World Health Organization, UNESCO and other global international agencies, at times with contributions from stakeholders in LMICs. Clear information was usually available on the research evidence supporting the use of resources developed by international agencies and universities and how such resources were evaluated. We often retrieved little or no information on the evidence base for the large number of flyers, blogs and videos and some handbooks/guides developed by smaller organisations. For only a minority of resources was it made explicit that they were developed by or with the involvement of people with DD themselves, and for a few more that they were developed by or with caregivers.

To the best of our knowledge this is the first systematic review of education/training resources on DD for non-specialists in LMICs. Searching the grey literature with targeted methods was especially important due to the nature of the review, that aimed to map resources rather than studies. The strategies used allowed us to identify resources used by several organisations operating in LMICs, including those for which any development and evaluation processes happened informally or were not documented in journals indexed in commonly searched academic databases.

Our mapping analysis revealed that a wealth of materials is available for both global and local use, including comics, children’s books, flyers, posters, fact sheets, blogs, videos, websites pages, social media channels, handbooks and self-education guides, training programmes or sessions. However, a few gaps were identified. First, a large proportion of resources focused on autism, or on specific communication and behavioural challenges, while few resources seemed appropriate to provide non-specialists with a genuine understanding of the needs of children with profound intellectual disabilities. Secondly, while many of the materials identified could be used as part of a training programme, among education resources only few manuals could provide guidance for delivering a full interactive experiential programme, using principles of adult learning [ 14 ]. More of such training programmes were available for cadres of health workers. Finally, we did not identify any resources targeted at eastern Europe LMICs, included resources seemed mostly focused on specific countries in Africa (Ethiopia, South Africa), Latin America (Argentina, Brazil) and Asia (India, Bangladesh). While this may be partly due to artefacts of the search (for example because materials from some countries may be more easily discoverable by English language search engines), it should be noted that we actively sought out websites and sources of information from other countries. Studies and materials from other regions, including Eastern Europe, were identified through the search, but rarely or never met criteria for inclusion. Our review thus suggests that training and development for the field of DD is much less prominent in some LMICs than others. This finding mirrors the burgeoning research field on DD in LMIC, where research is steadily growing, but as yet is still concentrated in specific LMICs (Franz et al. 2017) [ 39 ]

For a few resources, peer-reviewed articles reporting evaluation studies were available. For example, resources developed for community health workers in Ethiopia were found to reduce negative beliefs and stigmatising attitudes towards autistic children [ 34 ]. Similarly, in the Lao People’s Democratic Republic, The Story of Khamdy [ 15 ], an online learning module on autism, was shown to effectively reduce stigma among schoolteachers who completed the course and increased their knowledge of autism and inclusion in mainstream classes (Low et al. 2021). In Ethiopia, We’ll Make It , a comic book on epilepsy increased awareness of community members who read it (specifically, high school students) and its broader distribution was recommended [ 33 ]. In the state of Andhra Pradesh in India, Intellectual Disabilities: A Manual for CBR Workers [ 19 ] was used as part of a broader task-sharing cascade-training intervention which extended coverage of services for children with DD and their families in a sustainable way [ 20 ]. These examples show the availability of a few resources evaluated through research studies, in various formats, for various audiences and purposes and on different DDs, that can be used in multiple awareness raising pathways. This is in line with academic literature that recommends awareness-raising campaigns delivered to multiple groups, including family and community-members as well as health and education workers, and both to smal-scale targeted groups and at national and international levels [ 6 , 29 ].

An identified gap was a scarcity of resources developed with the involvement of people with DD and their families. The call for direct involvement of autistic people and people with intellectual disability in advocacy and research has only relatively recently become more prominent (e.g., [ 8 , 22 , 26 ]), our review suggests this call has not yet resulted in a range of training materials co-developed by the DD community for use in LMIC settings. This is a clear priority for future advocacy and training development efforts. A positive aspect of the resources reviewed is that most of them were developed in the context of their intended use, with the involvement of local clinicians, caregivers, researchers, and educators [ 11 ]. Moreover, thanks to the methodology adopted, the resources included in our review do not overlook efforts by grassroots organisations, rarely found in peer-reviewed academic literature. While a downside of this is that several resources have a less clear and formally recorded evaluation, highlighting contributions made to DD knowledge and experience by grassroots organisations is an important strength of our review.

Our review screening process uncovered that several training interventions, both among those developed by NGOs and documented in media articles and those reported in peer-reviewed research reports, were not manualised, or the manual could not be made available for wider use. Such practices are preventing potentially helpful and scalable programmes from being disseminated or even re-used in the same setting where they were developed, after researchers or organisation agents’ departure. We believe this issue should be addressed, in order to promote the scale up of existing programmes and avoid duplicating efforts through time and across countries. While training programmes and interventions should always stem from a local need recognised by stakeholders and be developed within or adapted to the context, several training areas on DD (e.g., the main signs and diagnostic features; [ 38 ]) can be largely transferable between LMICs, as adaptations to socio-economic challenges in LMICs compared to high-income countries (e.g., poverty experienced by service users) may be as relevant as cultural adaptations to specific communities [ 31 ]. For this reason, we have compiled Tables  1 , 2 and 3 and presented all identified resources that can be accessed freely, to support their use in other settings that may need them. We have also provided more detailed information in the additional file, on their content, country of original development and copyright, to encourage researchers and organisations to adopt them, and when possible, adapt them, wherever needed.

Limitations

The process of our review was designed to systematically identify a large number of resources from both the academic and grey literature, through the use of a variety of methods and comprehensive and systematic search terms. However, a few methodological and practical choices may have reduced our ability to identify all resources.

Some non-English resources were likely missed, as only English search terms were included. However, multiple non-English and non-Western websites and sources were searched and it was noted that at least some of the English search terms were functional to identify resources in those websites: this was especially true for the term “autism”. This may partly explain why the results from our search were slightly skewed towards resources focused on autism compared to other DD. An additional explanation may be the high prevalence of NGOs specifically dedicated to autism identified for inclusion in our search. However, our findings may also reflect a true predominance of resources on autism, in line with previous research that has identified a disproportionally growing interest in research and research funding for autism compared to other DD [ 4 ].

Finally, we did not impose date limits on our review and readers should note that there are some outdated resources in our list. Our decisions were guided by the aim to outline all resources available, without quality judgements, to allow other researchers and advocates to select resources most appropriate for their work and context. We provide substantial information on each resource in Tables  1 , 2 , and 3 , to support readers in their resource selection.

Conclusions

Our systematic review identified a wealth of education and training resources on DD for non-specialists in LMICs, in various formats and with different uses, including raising awareness and training non-specialist professionals in health and education settings. The authors recommend that several resources among the ones described in our results could be employed in different settings to address needs common to other countries or settings compared to where they were originally developed. New interventions and programmes should be made freely accessible and adaptable whenever possible, to increase their impact and reduce the need for new intervention development efforts. Finally, more resource development efforts focused on intellectual disabilities are needed.

Availability of data and materials

Not applicable.

In this manuscript we use a combination of identity-first (for autism) and person-first (for other disabilities) language, to accommodate the spectrum of views of language preferences expressed by self-advocates (Kenny et al., 2016; Bury al., 2020; Buijsman et al., 2022). We have endeavoured to use non-pathologising language throughout (Dwyer et al., 2022) but have used medical terms when referring to review search terms or specific content within the reviewed resources (such as “symptoms” in the additional file) or when directly referring to medical diagnostic criteria.

Abbreviations

  • Developmental disabilities

Intellectual disability (Table 1, 2, 3)

Low- and middle-income country

Abubakar A, Ssewanyana D, Newton CR. A systematic review of research on autism spectrum disorders in sub-Saharan Africa. Behav Neurol. 2016. https://doi.org/10.1155/2016/3501910 .

Article   PubMed   PubMed Central   Google Scholar  

Adugna MB, Nabbouh F, Shehata S, Ghahari S. Barriers and facilitators to healthcare access for children with disabilities in low and middle income sub-Saharan African countries: a scoping review. BMC Health Serv Res. 2020;20:1–11. https://doi.org/10.1186/s12913-019-4822-6 .

Article   Google Scholar  

Beckman PJ, Montagna D. Research Brief: Understanding and Responding to the Needs of Individuals with Disabilities in Rural El Salvador: “Comunidades Inclusivas”. Montrouge: Firah. 2015a. https://www.firah.org/upload/l-appel-a-projets/projets-laureats/2015/salvador/research-brief-eng.pdf . Accessed 6 Feb 2024

Bishop DVM. Which neurodevelopmental disorders get researched and why? PLoS ONE. 2010;5:e15112. https://doi.org/10.1371/journal.pone.0015112 .

Article   ADS   CAS   PubMed   PubMed Central   Google Scholar  

de Leeuw A, Happé F, Hoekstra RA. A conceptual framework for understanding the cultural and contextual factors on autism across the globe. Autism Res. 2020;13:1029–50. https://doi.org/10.1002/aur.2276 .

Divan G, Bhavnani S, Leadbitter K, Ellis C, Dasgupta J, Abubakar A, et al. Annual research review: achieving universal health coverage for young children with autism spectrum disorder in low-and middle-income countries: a review of reviews. J Child Psychol Psychiatry. 2021;62:514–35. https://doi.org/10.1111/jcpp.13404 .

Article   PubMed   Google Scholar  

Farace DJ, Frantzen J (Eds). Sixth international conference on grey literature: work on grey in progress. Grey literature 2004 conference proceedings. Amsterdam: TextRelease; 2005

Fletcher-Watson S, Brook K, Hallett S, Murray F, Crompton CJ. Inclusive practices for neurodevelopmental research. Curr Dev Disord Rep. 2021;8(2):88–97. https://doi.org/10.1007/s40474-021-00227-z .

Franz L, Chambers N, von Isenburg M, de Vries PJ. Autism spectrum disorder in sub‐saharan africa: A comprehensive scoping review. Autism Res. 2017;10(5):723–49.  https://doi.org/10.1002/aur.1766

Godin K, Stapleton J, Kirkpatrick SI, Hanning RM, Leatherdale ST. Applying systematic review search methods to the grey literature: a case study examining guidelines for school-based breakfast programs in Canada. Syst Rev. 2015;4:1–10. https://doi.org/10.1186/s13643-015-0125-0 .

Hoekstra RA, Girma F, Tekola B, Yenus Z. Nothing about us without us: the importance of local collaboration and engagement in the global study of autism. BJPsych Int. 2018;15:40–3. https://doi.org/10.1192/bji.2017.26 .

Khan NZ, Muslima H (Eds). Training manual for the establishment of child development and disability services in Bangladesh. Dhaka: Bangladesh Protibondhi Foundation. 2021. https://www.bpfbd.org/dept-tsp/?fbclid=IwAR2LcVGXQ7rMfyKKb8PQmPwujlvA8Si0CvwLUN5p3ZRREnK4ost2oXY8q9A . Accessed 6 Feb 2024.

Kieling C, Baker-Henningham H, Belfer M, Conti G, Ertem I, Omigbodun O, et al. Child and adolescent mental health worldwide: evidence for action. Lancet. 2011;378(9801):1515–25. https://doi.org/10.1016/S0140-6736(11)60827-1

Knowles MS. Andragogy: adult learning theory in perspective. Community Coll Rev. 1978;5:9–20.

Low HM. The Story of Khamdy [Facebook page]. 2019. https://www.facebook.com/groups/965835180415612/learning_content . Accessed 6 Feb 2024.

Low HM, Wong TP, Lee LW, Makesavanh S, Vongsouangtham B, Phannalath V, et al. Can pictorial narration offer a solution to teacher training on the effective inclusion of students with autism spectrum disorder in low-resource settings? Investigation on knowledge and stigma change. Autism. 2021;25(5):1216–33. https://doi.org/10.1177/1362361320984899

Low HM, Wong TP, Lee LW, Makesavanh S, Vongsouangtham B, Phannalath V, et al. Can pictorial narration offer a solution to teacher training on the effective inclusion of students with autism spectrum disorder in low-resource settings? Investigation on knowledge and stigma change. Autism. 2012;25:1216–33. https://doi.org/10.1177/1362361320984899 .

Moher D, Liberati A., Tetzlaff J, Altman DG, PRISMA Group*. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann. Intern Med. 2009;151(4):264–9. https://doi.org/10.7326/0003-4819-151-4-200908180-00135

Narayan J. Intellectual disability: a manual for CBR workers (No. SEA-Rehab-77). World Health Organization. Regional Office for South-East Asia. 2007. https://apps.who.int/iris/bitstream/handle/10665/312354/sea-rehab-77-eng.pdf?sequence=1&isAllowed=y . Accessed 6 Feb 2024.

Narayan J, Pratapkumar R, Reddy SP. Community managed services for persons with intellectual disability: Andhra Pradesh experience. J Intellect Disabil. 2017;21:248–58. https://doi.org/10.1177/174462951668718 .

Olusanya BO, Davis AC, Wertlieb D, Boo NY, Nair MKC, Halpern R, et al. Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Glob Health. 2018;6:e1100–21. https://doi.org/10.1016/S2214-109X(18)30309-7 .

Pellicano E. Autism advocacy and research misses the mark if autistic people are left out. The Conversation. 2018. https://theconversation.com/autism-advocacy-and-research-misses-the-mark-if-autistic-people-are-left-out-94404 . Accessed 6 Feb 2024.

Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. Syst Rev. 2021;10:1–11. https://doi.org/10.1186/s13643-021-01626-4 .

Patel V, Hanlon C. Problems in childhood and adolescence. In Where There Is No Psychiatrist: A Mental Health Care Manual (pp. 229–267). Cambridge: Royal College of Psychiatrists. 2018. https://www.cambridge.org/core/books/where-there-is-no-psychiatrist/problems-in-childhood-and-adolescence/B602676A2A304314278F45E3143CB1E9 . Accessed 6 Feb 2024.

Pathare S, Brazinova A, Levav I. Care gap: a comprehensive measure to quantify unmet needs in mental health. Epidemiol Psychiatr Sci. 2018;27(5):463–7. https://doi.org/10.1017/S2045796018000100 .

Article   CAS   PubMed   PubMed Central   Google Scholar  

Poulsen R, Brownlow C, Lawson W, Pellicano E. Meaningful research for autistic people? Ask autistics! Autism. 2022;26:3–5. https://doi.org/10.1177/13623613211064421 .

Sangath Goa. Recognising Autism. 2018. https://www.youtube.com/watch?v=lZ1QGW9t8g8 . Accessed 6 Feb 2024.

Shorey S, Ng ED, Haugan G, Law E. The parenting experiences and needs of Asian primary caregivers of children with autism: a meta-synthesis. Autism. 2019;24:591–604. https://doi.org/10.1177/1362361319886513

Smythe T, Adelson JD, Polack S. Systematic review of interventions for reducing stigma experienced by children with disabilities and their families in low-and middle-income countries: state of the evidence. Trop Med Int Health. 2020;25:508–24. https://doi.org/10.1111/tmi.13388 .

Stewart LA, Lee LC. Screening for autism spectrum disorder in low-and middle-income countries: a systematic review. Autism. 2017;21:527–39. https://doi.org/10.1177/1362361316677025 .

Szlamka Z, Hanlon C, Tekola B, Pacione L, Salomone E, WHO CST Team, et al. Exploring contextual adaptations in caregiver interventions for families raising children with developmental disabilities. Plos ONE. 2022;17:e0272077. https://doi.org/10.1371/journal.pone.0272077 .

Teacher Empowerment for Disability Inclusion (TEDI). Educating and Caring for Children with Profound Intellectual Disability: A Manual for Carers and Teachers. Cape Town: TEDI. 2019. https://www.cbm.org/fileadmin/user_upload/TEDI_manual.pdf . Accessed 6 Feb 2024.

Tekle-Haimanot R, Preux PM, Gerard D, Worku DK, Belay HD, Gebrewold MA. Impact of an educational comic book on epilepsy-related knowledge, awareness, and attitudes among school children in Ethiopia. Epilepsy Behav. 2016;61:218–23. https://doi.org/10.1016/j.yebeh.2016.05.002 .

Tilahun D, Fekadu A, Tekola B, Araya M, Roth I, Davey B, et al. Ethiopian community health workers’ beliefs and attitudes towards children with autism: impact of a brief training intervention. Autism. 2019;23:39–49. https://doi.org/10.1177/1362361317730298 .

Tsehai Loves Learning [Facebook page]. Autism by Zemi Yenus. 2021. https://www.facebook.com/watch/?v=890845418357161&extid=NS-UNK-UNK-UNK-AN_GK0T-GK1C&ref=sharing . Accessed 6 Feb 2024.

World Health Organization. Meeting report: autism spectrum disorders and other developmental disorders: from raising awareness to building capacity: World Health Organization, Geneva, Switzerland 16–18 September 2013. World Health Organization. 2013. https://apps.who.int/iris/handle/10665/103312 . Accessed 6 Feb 2024.

World Health Organization. mhGAP Intervention Guide - Version 2.0. World Health Organization. 2016. https://www.who.int/publications/i/item/9789241549790 . Accessed 6 Feb 2024.

World Health Organization. International statistical classification of diseases and related health problems. 11th ed. Geneva: World Health Organization; 2019.

Google Scholar  

Zeidan J, Fombonne E, Scorah J, Ibrahim A, Durkin MS, Saxena S, et al. Global prevalence of autism: a systematic review update. Autism Res. 2022;15:778–90. https://doi.org/10.1002/aur.2696 .

Download references

Acknowledgements

We would like to acknowledge and sincerely thank all 91 experts that responded to our request for advice, as well as all authors who replied to our requests for clarifications and/or full-texts of records included at the various screening stages.

EG is supported by the UKRI Economic and Social Research Council through a London Interdisciplinary Social Science Doctoral Training Partnership (LISS DTP) studentship (ES/P000703/1). RAH, BT and CH receive support from the National Institute for Health and Care Research (NIHR200842) using UK aid from the UK Government and CH through the NIHR Global Health Research Group on Homelessness and Mental Health in Africa (NIHR134325) using UK aid from the UK Government. The views expressed in this publication are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. CH receives support from the Wellcome Trust through grants 222154/Z20/Z and 223615/Z/21/Z.

Author information

Authors and affiliations.

Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience (IoPPN), King’s College London, Addison House, Guy’s Campus, London, SE11UL, UK

Elisa Genovesi, Yuan Ishtar Yao, Emily Mitchell, Michal Arad, Victoria Diamant, Areej Panju, Bethlehem Tekola & Rosa A. Hoekstra

Centre for Global Mental Health, Department of Health Services and Population Research and WHO Collaborating Centre for Mental Health Research and Training, Institute of Psychiatry, Psychology and Neuroscience (IoPPN), King’s College London, 16 De Crespigny Park, London, SE58AB, UK

Charlotte Hanlon

Department of Psychiatry, WHO Collaborating Centre for Mental Health Research and Capacity-Building, School of Medicine, College of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia

Centre for Innovative Drug Development and Therapeutic Trials for Africa, College of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia

You can also search for this author in PubMed   Google Scholar

Contributions

EG (first author), RAH (last author) and BT (second-last author) developed the search strategy in collaboration with MA, VD and AP. MA and VD contacted the majority of experts; others were conducted by EG. EG, AP and IY created the customised Google search engines. IY (second author) conducted all searches and exported them in Excel for screening. IY and EM conducted all stages of screening and data extraction under the supervision of EG, who also acted as third screener to resolve doubts, RAH and BT. EG refined data extraction and drafted the report. CH provided expert advice in the early stages of planning the methodology and at the reporting stage. All authors reviewed and approved the manuscript prior to submission.

Corresponding author

Correspondence to Elisa Genovesi .

Ethics declarations

Ethics approval and consent to participate, consent for publication, competing interests.

The authors declare that they have no competing interests.

Additional information

Publisher's note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Additional file 1:.

Full search strategy [ 18 , 8 ].

Additional file 2:

Detailed information on the resources reviewed.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Genovesi, E., Yao, Y.I., Mitchell, E. et al. Mapping awareness-raising and capacity-building materials on developmental disabilities for non-specialists: a review of the academic and grey literature. Int J Ment Health Syst 18 , 10 (2024). https://doi.org/10.1186/s13033-024-00627-9

Download citation

Received : 06 April 2023

Accepted : 01 February 2024

Published : 24 February 2024

DOI : https://doi.org/10.1186/s13033-024-00627-9

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

  • Grey literature
  • Capacity building
  • Low- and Middle-Income Countries

International Journal of Mental Health Systems

ISSN: 1752-4458

research in developmental disabilities peer review

IMAGES

  1. (PDF) Exploring the Self-Disclosure Process in Peer Mentoring

    research in developmental disabilities peer review

  2. International Review Research In Developmental Disabilities

    research in developmental disabilities peer review

  3. Research in Developmental Disabilities Referencing Guide ·Research in

    research in developmental disabilities peer review

  4. (PDF) Peer Relationships of Students With Intellectual Disabilities in

    research in developmental disabilities peer review

  5. Research In Developmental Disabilities Ppt Powerpoint Presentation

    research in developmental disabilities peer review

  6. List of disabilities mentioned in the review studies

    research in developmental disabilities peer review

VIDEO

  1. Theories of learning // learning disabilities

  2. Crew Peer to Peer Fundraising

  3. Artists with Disabilities: Rights, Work & Welfare Research

  4. Behavioral Health Quarterly Statewide Meeting Meeting Recording October 27 2023

  5. INTELLECTUAL DISABILITY

COMMENTS

  1. Research in Developmental Disabilities

    About the journal. Research In Developmental Disabilities is an international journal aimed at publishing original research of an interdisciplinary nature that has a direct bearing on the understanding or remediation of problems associated with developmental disabilities. Articles will be primarily empirical ….

  2. Prevalence and trends of developmental disabilities among US ...

    Xia Zeng, Tianran Shen, Xiaohui Xing, Qingsong Chen & Wenhan Yang Scientific Reports 13, Article number: 17254 ( 2023 ) Cite this article 2527 Accesses 5 Altmetric Metrics Abstract Developmental...

  3. Research in Developmental Disabilities

    Research in Developmental Disabilities Research in Developmental Disabilities Supports open access 4.6 CiteScore 3.1 Impact Factor Menu Submit your article Guide for authors Guide for authors Submission checklist Before you begin Ethics in publishing Human and Animal Rights Declaration of interest Declaration of generative AI in scientific writing

  4. Global prevalence of developmental disabilities in children and

    Developmental disabilities are frequently defined as chronic physical, cognitive, speech or language, psychological, or self-care conditions that typically originate during childhood before the age of 22 years; are likely to continue indefinitely; and require additional coordinated services, support, or other assistance for an extended duration ...

  5. Developmental Disabilities Research Reviews

    Developmental Disabilities Research Reviews Articles Most Recent Most Cited Research Article Editorial: Special issue on adult development and aging with IDD Wayne Silverman, Marsha R. Mailick Pages: 1-5 First Published: 16 August 2013 Full text PDF References Request permissions Research Review

  6. Evidence-Informed Milestones for Developmental Surveillance Tools

    The Centers for Disease Control and Prevention's (CDC) Learn the Signs.Act Early. program, funded the American Academy of Pediatrics (AAP) to convene an expert working group to revise its developmental surveillance checklists. The goals of the group were to identify evidence-informed milestones to include in CDC checklists, clarify when most children can be expected to reach a milestone (to ...

  7. A clinical primer on intellectual disability

    Most persons with intellectual disability have mild intellectual disability, for which an underlying biologic cause is less likely to be identified; whereas, a small percentage of persons who have severe to profound intellectual deficit, an underlying biologic cause is highly likely to be identified ( 1 - 4 ).

  8. Participation of children with disabilities in school: A realist

    The aim of this review was to synthesise evidence of psychosocial and environmental factors associated with school participation of 4-12 year old children with disabilities to inform the development of participation-fostering interventions. Methods A systematic search and synthesis using realist methods was conducted of published research.

  9. Trends and opportunities in research on disability and work: An

    The World Report on Disability (World Health Organization [WHO], 2011) estimated that more than a billion people live with some form of disability representing about 15% of the world's population.According to the Progress Report on the implementation of the European Disability Strategy (2010-2020), "it is expected that, by 2020, approximately 120 million Europeans will have a disability ...

  10. Strategies for enhancing social skills of individuals with intellectual

    The study revealed that the social skills of individuals with intellectual disability had been fostered using different strategies, such as classroom-based intervention, emotional intelligence training, use of a peer network intervention, computer games of emotion regulation, and puppet play therapy.

  11. Literature Review of Employment Outcomes for Adults ...

    International Review of Research in Developmental Disabilities , Pages 213-266 Chapter Six - Literature Review of Employment Outcomes for Adults With Intellectual and Developmental Disability Add to Mendeley https://doi.org/10.1016/bs.irrdd.2018.08.006Get rights and content

  12. PDF Research in Developmental Disabilities

    In a systematic review of mixed methods studies about special education and disability research published between 2007 and July 2019 in 15 top-ranked journals, including Research in Developmental Disabilities, Corr et al. (2021) found only 43 articles that reported mixed methods studies (0.62% of the total number of articles published).

  13. Peer Support Provided by People with Intellectual and Developmental

    The findings of the rapid scoping review aided in developing key sections of a Peer Support Toolkit to help people with intellectual and developmental disabilities engage in research to create more inclusive research teams and research that is informed directly by the needs of people with lived experience.

  14. Announcements

    1 February 2021 STM Peer Review Taxonomy Pilot - Research in Developmental Disabilities This pilot identifies and standardises definitions and terminology in peer review practices across publishers. The following summary describes the peer review process for this journal: Identity transparency: Double anonymized Reviewer interacts with: Editor

  15. PDF A Portrait of Peers Within Peer-Mediated Developmental Disabilities

    interventions. We reviewed 98 studies to examine the portrait of more than 3,000 peers without disabilities who have participated in peer-mediated interventions involving middle and high school students with IDD. Peer and student demographics were very diverse, as were the methods for peer recruitment and selection, the interventions they ...

  16. The Participation of People with Disabilities in the Workplace Across

    Indeed, it has been estimated that in the United States (US), only one in three (34.9%) individuals with disabilities are employed compared to 76% of their counterparts without disabilities, and this disparity appears to be increasing over time (Houtenville & Ruiz, 2012; Kraus, 2017; Lauer & Houtenville, 2017 ).

  17. Peer relationships of students with intellectual disabilities in

    We conducted a systematic review of the literature on peer relationships in special needs classrooms for students with ID. Studies that provided information on social status, social interactions, friendships, or the classroom networks of students with ID in special needs classrooms were included.

  18. Health professionals' education related to ...

    Background. People with intellectual and developmental disabilities are among the most underserved in an inequitable healthcare system. Methods. Using Arksey and O'Malley's methodology and a social determinants of health framework, we conducted a scoping review of literature on the state of practice in education of healthcare professionals in the health and healthcare needs of this population.

  19. Research in Developmental Disabilities

    Clinical management of individuals with Intellectual Disability: The outbreak of Covid-19 pandemic as experienced in a clinical and research center Research in Developmental Disabilities. Serafino Buono, Marinella Zingale, Santina Città, Vita Mongelli, ... Donatella Greco.

  20. Nursing care for persons with developmental disabilities: Review of

    In this paper we present findings from a review of published peer‐reviewed literature on effective training and education approaches for nurses caring for persons with DDs. 2. METHODS. ... Mental Retardation and Developmental Disabilities Research Reviews, 12 (1), 70-82.

  21. Mapping awareness-raising and capacity-building materials on

    Most children with developmental disabilities (DD), such as intellectual disabilities and autism, live in low- and middle-income countries (LMICs), where services are usually limited. Various governmental, non-governmental and research organisations in LMICs have developed awareness-raising campaigns and training and education resources on DD in childhood relevant to LMICs. This study aimed to ...

  22. Developmental Disabilities Research Reviews

    Dementia and mild cognitive impairment in adults with intellectual disability: Issues of diagnosis. Sharon J. Krinsky-McHale, Wayne Silverman. Pages: 31-42. First Published: 16 August 2013. Abstract.

  23. Research in Developmental Disabilities

    Read the latest articles of Research in Developmental Disabilities at ScienceDirect.com, Elsevier's leading platform of peer-reviewed scholarly literature. Skip to main ... Special Issue on The post-COVID-19 psychological and educational effects on the home and school lives of students with developmental disabilities Edited by Evdokia Pittas ...

  24. Inclusion of Black and Latina Parents With Physical Disabilities in a

    Human subjects research training is time-consuming and often inaccessible to peer researchers (e.g., written with academic jargon); therefore, we implemented essential supports such as follow-up discussions about the human subjects training to facilitate comprehension of the Institutional Review Board training content and answer questions.

  25. Research in Developmental Disabilities

    4.6 CiteScore 3.1 Impact Factor Submit your article Guide for authors Open access information Research in Developmental Disabilities offers authors two choices to publish their research: In accordance with funding body requirements, Elsevier offers alternative open access publishing options. Visit our open access page for full information.