Levels of Evidence Table

RE VI EW

AR TI CL E

International Health 2021; 13: 222–231 doi:10.1093/inthealth/ihaa044 Advance Access publication 11 August 2020

Early intervention for children with developmental disabilities in low and middle-income countries – the case for action

Tracey Smythe a,∗, Maria Zuurmonda, Cally J. Tannb,c, Melissa Gladstoned and Hannah Kupera

aInternational Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine, London, WC1E 7HT, UK; bMaternal, Adolescent, Reproductive and Child Health Centre, London School of Hygiene & Tropical Medicine, London, WC1E 7HT, UK; cMRC/UVRI & LSHTM Uganda Research Unit, Entebbe, Uganda; dInstitute of Translational Medicine, University of Liverpool, Liverpool, L69 7TX, UK

∗Corresponding author: Tel: +44 20 7636 8636; E-mail: [email protected]

Received 6 April 2020; revised 3 July 2020; editorial decision 13 July 2020; accepted 14 July 2020

In the last two decades, the global community has made significant progress in saving the lives of children<5 y of age. However, these advances are failing to help all children to thrive, especially children with disabilities. Most early child development research has focussed on the impact of biological and psychosocial factors on the de- veloping brain and the effect of early intervention on child development. Yet studies typically exclude children with disabilities, so relatively little is known about which interventions are effective for this high-risk group. In this article we provide an overview of child development and developmental disabilities. We describe family-centred care interventions that aim to provide optimal stimulation for development in a safe, stable and nurturing envi- ronment. We make the case for improving opportunities for children with developmental disabilities to achieve their full potential and thrive, including through inclusive early childhood development intervention. Finally, we call for the global research community to adopt a systematic approach for better evidence for and implemen- tation of early interventions for children with developmental disabilities in low-resource settings.

Keywords: child development, children with disabilities, developmental disabilities, disability studies, early intervention.

Introduction Substantial global progress has been made in reducing child deaths since 1990 and the mortality rate of children <5 y of age has decreased in all world regions. However, non-communicable morbidities and disabilities have not been addressed to the same extent. This review discusses the urgency of taking actions to nar- row the inequality gap in early childhood developmental care, es- pecially for the 53 million children <5 y of age living with disabil- ities and developmental disorders such as epilepsy, intellectual disability, sensory impairments, autism spectrum disorder and attention deficit hyperactivity disorder.1 A focus on supporting childrenwith disabilities to thrive during their early years is impor- tant, as this period is critical for maximising their development. Furthermore, under the United Nations Convention of Rights for a Child and the United Nations Convention of the Rights of Persons with Disabilities, governments are duty-bound to provide early years services that are inclusive of and available to all children.2,3 This article will describe child development and developmental disabilities andmake the case forwhich equitable early childhood development (ECD) interventionsmay be optimal for helping chil- dren with developmental disabilities to achieve their potential.

Child development Early childhood is a period of great opportunity for optimumbrain growth, but it is also a period of vulnerability. Development in language, cognition, motor and socio-emotional domains occurs rapidly in these first years. These areas of development do not operate or develop in isolation, but enable each other and mutu- ally interact as the child learns to becomemore independent. For instance, as a child learns to see, she will increasingly reach for and play with objects and thereby develop motor skills and co- ordination. Biological, psychosocial4,5 and environmental factors also crucially affect the structure and functioning of the brain as it is developing.6 For example, if a child experiences adequate nu- trition and is provided with opportunities to play, she may pro- gressively explore her environment and interact with her care- giver and by doing so, reinforce her psychosocial development. Furthermore, the time period when these factors influence brain growth are critically important, as there are particular early win- dows of opportunity that if not harnessed, may prevent optimal brain development and lifelong well-being.7 It is increasingly apparent that optimal early child devel-

opment has lifetime beneficial consequences for educational

© The Author(s) 2020. Published by Oxford University Press on behalf of Royal Society of Tropical Medicine and Hygiene. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/ licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.

222

D ow

nloaded from https://academ

ic.oup.com /inthealth/article/13/3/222/5891235 by guest on 15 O

ctober 2024

International Health

achievement, adult productivity and population health.8–10 Con- versely, exposure to biological and psychosocial risks negatively affects the developing brain and compromises the development of children.5 Many structural factors determine these early child circumstances. These factors include a lack of nurturing care (nu- trition, stimulation, good health) in the early years, as well as inadequate cognitive and psychosocial stimulation.5,11 Children <5 y of age in low- andmiddle-income countries (LMICs) may be particularly at risk of poor development due to poor health and nutrition.7 Child development can be encouraged through intervention

in early childhood.11 A number of mutually important elements are needed formaximising children’s development. These include supporting responsive relationships, reducing sources of stress in the lives of children and families, building executive function and self-regulation skills and reinforcing contexts in which learn- ing is most achievable across all developmental domains.12,13 ECD interventions work to improve development through inte- grating family support, health, nutrition and educational services and providing direct learning experiences to young children and families.14 The strategic focus of the World health Organization (WHO),

United Nations Children’s Fund (UNICEF) andWorld Bank ‘Nurtur- ing Care Framework’ is therefore timely.15–17 This action plan pro- vides a framework for helping children survive and thrive through five strategic actions—lead and invest, focus on families and their communities, strengthen services,monitor progress and use data and innovate—and thereby aims to transform health and human potential. We know that urgent action is necessary to improve early childhood outcomes and ensure that all children reach their full potential as adults. Children with developmental disabilities must be included in this agenda, as they are a marginalised groupwith additional and specific needs andwill otherwise be left behind.

Developmental disability Developmental delay and developmental disability are two dis- tinct concepts. Developmental delay is often defined as a deviation from normative milestones; this may be in terms of de- layed cognitive, language, motor and/or socio-emotional devel- opment.18 The term developmental disabilities covers a range of childhood conditions and is used differently across different set- tings and cultures.19 In this article we define developmental dis- ability as a heterogeneous group of conditions that can impact on the development of children’s function (e.g. sensory, cogni- tive, physical), with a very wide range of effects.20 Developmen- tal disability is the most common cause of childhood disability, with an estimated 53 million children <5 y of age living with de- velopmental disabilities globally.21 This estimate is based on only six conditions (epilepsy, intellectual disability, vision loss, hearing loss, autism and attention deficit hyperactivity disorder) and on present reporting of these conditions. It is likely therefore that the true number of children with developmental disability is much higher than this estimate, particularly if a broader age range is considered. The majority of children with developmental disabilities live in

LMICs,21 and the prevalence is higher among families with high

Box 1. Identification of children with developmental disabilities

In order to meaningfully measure thriving and well-being of children globally, developmental assessment tools need to be culturally relevant and age appropriate and cover the spectrum of developmental domains, including sensory im- pairments and educational outcomes. Examples of tools with high validity and reliability to measure several devel- opmental domains include the Bayley Scales of Infant and Toddler Development (BSID II or Bayley-III).22 Regionally de- veloped instruments include the Malawi Development As- sessment Tool23 and the Kilifi Developmental Inventory.24

However, a recent review found variability in translation, adaptation, piloting and standardisation of tools, with im- portant domains such as vision, hearing, functioning and dis- ability often omitted, which limits holistic understanding of a child’s progress.25 In addition, no tool covers all domains of development and is accurate and feasible in all contexts.26

levels of poverty and low education.27 However, there remain data gaps for the prevalence, epidemiology and causes of devel- opmental disabilities in LMICs.28 One reason for the uncertainty in the estimates is that identification of children with or at risk of developmental delay requires assessment using valid devel- opmental evaluation tools to measure ECD29 (Box 1), and these facilities are often not available in LMICs. The impacts of developmental disabilities extend far beyond

functional abilities. Children with developmental disabilities and their families are at high risk of social exclusion, exclusion from education and even stigma and violence.30 Furthermore, look- ing after a child with developmental disabilities potentially places an enormous strain on families, and caregivers experience high levels of stress, anxiety, depression, physical exhaustion, stigma and discrimination.31 This further increases the risk of mental ill health and social isolation in caregivers. A recent systematic re- view found caregivers of children with intellectual and develop- mental disabilities, when compared with caregivers of children without intellectual and developmental disabilities, experienced elevated levels of depressive symptoms (31%vs 7%, respectively) and anxiety symptoms (31% vs 14%, respectively).32 There are also substantial costs to childhood disability, both the cost of ad- ditional services and resources required by the child and the lost income from parents who are caring for their child. Consequently, childhood disability may exacerbate poverty.33,34 However, there is generally a lack of available services and support for children with disabilities and their families, especially in LMICs, which fur- ther compound these risks.

Early intervention for children with developmental disabilities Evidence is limited, but growing, on the effectiveness of ECD in- terventions for children at risk of and with developmental delays, particularly in LMICs.35 Indeed, many programmes and stud- ies actively exclude children with developmental disabilities, as

223

D ow

nloaded from https://academ

ic.oup.com /inthealth/article/13/3/222/5891235 by guest on 15 O

ctober 2024

T. Smythe et al.

Box 2. Inclusion of children with developmental disabilities in clinical trials

Our review of the first 100 titles of registered clinical trials of ECD interventions (Appendix 1), and inclusion of childrenwith disabilities, demonstrated that 50% of the trials exclude chil- dren with disabilities, 22% of trials target children with dis- abilities, 3% of trials target children in general and include children with disabilities and 25% of trials do not specify whether children with disabilities are included or excluded.

additional considerations may be required, and children with de- velopmental disabilities may be unable to show progress when using developmental progress as the primary outcome9,36–38 (Box 2). Consequently, risks to delayed development are compounded

for children with developmental disabilities, as they potentially receive less stimulation and fewer learning opportunities through other health service or care routes.39 Exclusion of children with developmental disabilities from ECD thus perpetuates an already fragile cycle of development. We know that early childhood de- velopmental intervention for these children is imperative, but we cannot inform planning and delivery of inclusive services for all children without better research in this area. For example, there are gaps in evidence-based approaches to monitoring and eval- uation of ECD projects in LMICs, such as challenges in measure- ment of outcomes in routine programmes, which limit compar- ative understanding of impact, and in defining and monitoring quality and coverage.25 Early identification of children with developmental disabili-

ties, as well as early childhood intervention (ECI), improves chil- dren’s opportunities to maximise their developmental potential and functioning as well as their quality of life and social par- ticipation.40,41 Early identification and intervention are two dis- tinct complementary strands; timely identification of children with developmental disabilities is required for early intervention, which strengthens the cumulative process of development, help- ing children acquire new skills and behaviours to reinforce and strengthen learning. In addition, some ECIs may have wider ben- efits for caregivers, such as through establishing support, thus helping build their knowledge, confidence and coping strate- gies,32 with positive impacts for their mental health. However, data are lacking from LMICs and there is a paucity of implemen- tation evidence to guide policymakers and donors.33 ECI for children with disabilities can comprise a range of coor-

dinated multidisciplinary services and can take many forms, in- cluding hospital- or clinic-based care, school-based programmes, parenting and community support and home-based childhood therapies. In high-resource settings, we know that family- centred interventions are more likely to result in the great- est satisfaction with services and improve psychosocial well- being for the child and caregiver.42 With regards to impact, a systematic review of ECIs for children at risk of cerebral palsy demonstrated improved cognitive outcomes up to preschool age and improved motor outcomes during infancy, although variability in interventions limited the identification of which

interventions are most effective.43 Nevertheless, without such ECIs in LMICs, years lived with disability will be more than 3.3 million.1 There are broadly two approaches to providing ECI for chil-

dren with developmental disabilities, including children with dis- abilities in mainstream ECD interventions and targeted interven- tion programmes for children with disabilities. These approaches take many different forms, as they are used to support children and families with different needs. For example, universal pro- grammes in the UK, such as the five mandated health visits for young children, are offered to all families. In contrast, targeted programmes, such as the Disabled Children’s Outreach Service (DCOS), are aimed specifically at vulnerable families of children with a disability where the children are at higher risk of poor out- comes in later life.44 While both inclusive and targeted efforts for children with dis-

abilities at the level of early childhood centres have increased,45 weak country health systems and conflict settings are major im- pediments to delivering high-quality services.46 There remains a need for inclusive approaches for children with developmental disabilities in mainstream services, as well as within specialist ECIs. This means that the role of families can be particularly cru- cial to fill existing gaps in service availability.

Case studies of ECI for children with developmental disabilities A number of case studies have been identified for ECI for children with developmental disabilities. The following have been selected for description, as they illustrate different approaches for children with different developmental disabilities in several LMIC settings. The WHO has developed Caregiver Skills Training (CST) for

caregivers of children with intellectual disabilities.47,48 The CST consists of nine group sessions and three home visits. The pro- gramme teaches strategies to promote communication and learning and address challenging behaviours. However, sustain- able and scalable quality delivery of the group format by a lay fa- cilitator remains a challenge due to limited integration in health systems.49 Evidence of effectiveness is currently lacking, but randomised controlled trials are under way in Pakistan (Family Networks [FaNs] for Children with Developmental Disorders and Delays50) and Italy, with future trials planned in China, Ethiopia and Kenya.51 Interventions that aim to provide contextualised psychologi-

cal support to caregivers of children with intellectual disabilities include ‘Titukulane’, a community group intervention that aims to reduce mental health problems among the parents of affected children.52 This community-based intervention consists of eight modules that have been developed and piloted to help parents cope with the challenging role of caring for a child with intellec- tual disabilities. Learning through Everyday Activities with Parents (LEAP-CP)

is a family-centred intervention delivered peer to peer at home during 30 weekly 2h visits that aims to improve the mobility of children with cerebral palsy.53 Visits include therapeutic mod- ules (goal-directed active motor and cognitive strategies and LEAP-CP games) and parent education. Randomised controlled

224

D ow

nloaded from https://academ

ic.oup.com /inthealth/article/13/3/222/5891235 by guest on 15 O

ctober 2024

International Health

trials are currently under way in India.54 The trial also provides nutrition and health support to all families in the study, which may influence the findings. The London School of Hygiene & Tropical Medicine (UK) has de-

veloped three caregiver group interventions under the ‘Ubuntu’ umbrella (resources available from www.ubuntu-hub.org). The interventions consist of 10 sessions, the content ofwhich includes information about essential care practices, such as feeding, posi- tioning, communication and play, offered through a local support group format. ‘Getting to know cerebral palsy’ was developed as a resource to empower families using a participatory approach at the community level.31,55 The ABAaNA Early Intervention Pro- gramme (EIP) was developed in response to a recognised need to support families of very young children (<2 y) with an evolv- ing developmental disability.56 ‘Juntos’ was developed for chil- dren with congenital Zika syndrome and their families in Latin America and integrates a strengthened component on caregiver emotional well-being, arguably fundamental to a child’s early development.57–60 Interventions for children with autism spectrum disorder in-

clude PASS, a parent-mediated intervention for autism spec- trum disorder in India and Pakistan.61 The intervention uses video feedback methods to address parent–child interaction and was adapted for delivery by non-specialist workers. As PASS is focused on improving a child’s social communica- tion, common mental health comorbidities such as sleep dif- ficulties will be important to integrate into wider intervention programmes. These examples provide good case studies of diverse inter-

ventions for different children with developmental disabilities in different low-resource settings. These case studies indicate that in LMICs, the gap in meeting the holistic needs of children with developmental disabilities may be addressed through the use of community-based group interventions facilitated by trained and supervised health or peer supportworkers. Commonality is the fo- cus on caregiver involvement, which is critical, particularly where there are few health services. Yet formal evaluation of their effec- tiveness and cost-effectiveness is lacking, in addition to limited implementation with education and social welfare, which ham- pers scaling of these services.

The case for action The number of children with developmental disabilities is large and the impacts on the child and family are extensive. There are valuable lessons learned from case studies, yet there re- mains insufficient progress in ECI for children with developmen- tal disabilities and unmet needs are widespread. The causes of this gap are complex and diverse. An important reason is that in many settings health services are often fragile, poorly co- ordinated and overstrained, with concerns about the availabil- ity and quality of healthcare workers capable of delivering the intervention. Health systems gaps are particularly important in fragile states, including those affected by war and famine, as they experience many competing pressing needs. Furthermore, the policy agenda supporting a focus on children with devel- opmental disabilities is weak internationally and nationally in many cases, limiting the priority given to this issue and the

availability of funding for developing services. Ensuring inclusive education is a clear responsibility for United Nations member states under international treaties and Sustainable Development Goal 4, to ‘ensure inclusive, equitable quality education for all’. However, investing in inclusion prior to schooling is notmandated and consequently becomes optional. Cultural challenges also ex- ist, such as widespread stigma and discrimination around chil- dren with disabilities and their families.62 Finally, the evidence base on needs for and effectiveness of services is currently weak and needs to be strengthened. Enhancing environments that pro- vide equal opportunities for children with developmental disabil- ities for ECI therefore requires a systems approach with global collaboration. Accordingly, priorities for future research to ensure that all

young children reach their development potential include as- sessment of the effect of interventions for children with devel- opmental disability and their families in different low-resource settings. Further identification of barriers to accessing general services (e.g. primary healthcare) as well as specialist services is also required, as poverty remains a major issue for affected families in LMICs. Furthermore, studies that identify how to max- imise the reach and cost-effectiveness of ECD interventions for children with developmental disabilities are warranted. Evalua- tion of how these interventions can be embedded within health systems are needed to strengthen the service delivery strate- gies. Global collaboration in these efforts are required in research, and critical steps include providing best evidence on practices to improve knowledge and skills at local levels to avoid chil- dren with developmental disabilities being turned away from existing services and evidence of ‘what works’ to provide sus- tainable, inclusive ECD interventions with impact in resource- constrained settings.We call for international research communi- ties, including funders, to adopt a systematic approach for better evidence.

Conclusion ECD interventions are aimed at improving the development of children. However, children with developmental disabilities are often excluded from these programmes, even though they have the greatest need for support. There is still a dearth of research about what interventions are effective in improving outcomes for this marginalised group and an even greater lack of evidence on cost-effectiveness and what can be successfully implemented at scale. A two-pronged approach is likely to be optimal, encourag- ing the inclusion of children with disabilities in mainstream ECD programmes,while also offering targeted approaches,most likely through caregivers. We call for global collaboration among inter- national research communities, including funders, to adopt a sys- tematic approach to strengthening the available evidence base of interventions for children with developmental disabilities and their families. We call for greater attention for this marginalised group, to prioritise public policies and hold governments account- able to ensure that multisectoral services centred around the child and his/her family are provided during this crucial time. This will contribute to ensuring that all children have an early founda- tion for optimal development, a key factor in equitable long-term health.

225

D ow

nloaded from https://academ

ic.oup.com /inthealth/article/13/3/222/5891235 by guest on 15 O

ctober 2024

T. Smythe et al.

Author’s contributions: HK conceived the study. TS carried out the analysis and interpretation of case study data. TS and HK drafted the manuscript. MZ, CJT, MG and HK critically revised the manuscript for in- tellectual content. All authors read and approved the final manuscript. TS and HK are guarantors of the paper. The data underlying this article are available in the article and in its online supplementary material.

Acknowledgements: None.

Funding: This work was supported by the Wellcome Trust and Depart- ment for International Development (grant 206719/Z/17/Z to HK). The funders had no role in the study design, data collection and analysis, de- cision to publish or preparation of the manuscript.

Competing interests: MG is a member of expert panels for the WHO and UNICEF on measurement of childhood development and disability. This research paper was undertaken outside and separate from these duties.

Ethical approval: Not required.

References 1 Olusanya BO, de Vries PJ, Olusanya BO, et al. Nurturing care for chil- dren with developmental disabilities: a moral imperative for sub- Saharan Africa. Lancet Child Adolesc Health. 2018;2(11):772–4.

2 United Nations. Convention on the Rights of the Child 1989. Available from: http://www2.ohchr.org/english/law/crc.htm.

3 United Nations Committee on the Rights of Persons with Disabili- ties. Report of the Committee on the Rights of Persons with Dis- abilities: First session (23–27 February 2009), Second session (19–23 October 2009), Third session (22–26 February 2010), Fourth session (4–8 October 2010). Available from: https://www.refworld.org/docid/ 4eef033a2.html [accessed 27 February 2020].

4 MAL-ED Network Investigators. Early childhood cognitive develop- ment is affected by interactions among illness, diet, enteropathogens and the home environment: findings from the MAL-ED birth cohort study. BMJ Glob Health. 2018;3(4):e000752.

5 Walker SP, Wachs TD, Grantham-McGregor S, et al. Inequality in early childhood: risk and protective factors for early child development. Lancet. 2011;378(9799):1325–38.

6 Britto PR, Lye SJ, Proulx K, et al. Nurturing care: promoting early child- hood development. Lancet. 2017;389(10064):91–102.

7 Black MM, Walker SP, Fernald LCH, et al. Early childhood devel- opment coming of age: science through the life course. Lancet. 2017;389(10064):77–90.

8 Attanasio O, Meghir C, Nix E, et al. Human capital growth and poverty: evidence from Ethiopia and Peru. Rev Econ Dyn. 2017;25:234–59.

9 Richter L, Black M, Britto P, et al. Early childhood development: an imperative for action and measurement at scale. BMJ Glob Health. 2019;4(Suppl 4):e001302.

10 Aguilera Vasquez N, Daher J. Do nutrition and cash-based interven- tions and policies aimed at reducing stunting have an impact on eco- nomic development of low-and-middle-income countries? A system- atic review. BMC Public Health. 2019;19(1):1419.

11 Engle PL, Fernald LC, Alderman H, et al. Strategies for reduc- ing inequalities and improving developmental outcomes for young children in low-income and middle-income countries. Lancet. 2011;378(9799):1339–53.

12 Aboud FE, Yousafzai AK. Global health and development in early child- hood. Annu Rev Psychol. 2015;66:433–57.

13 Institute of Medicine, National Research Council. Transforming the workforce for children birth through age 8: a unifying foundation. Washington, DC: National Academies Press; 2015.

14 Engle PL, Black MM, Behrman JR, et al. Strategies to avoid the loss of developmental potential in more than 200 million children in the developing world. Lancet. 2007;369(9557):229–42.

15 World Health Organization. Nurturing care framework. Geneva:World Health Organization; 2018.

16 Gove A, Black MM. Measurement of early childhood development and learning under the Sustainable Development Goals. J Hum Dev Capa- bil. 2016;17(4):599–605.

17 Daelmans B, Darmstadt GL, Lombardi J, et al. Early childhood de- velopment: the foundation of sustainable development. Lancet. 2017;389(10064):9–11.

18 Boggs D, Milner KM, Chandna J, et al. Rating early child development outcomemeasurement tools for routine health programmeuse. Arch Dis Child. 2019;104(Suppl 1):S22–33.

19 Wong VCN. Global developmental delay – a delay in development of terminology. Dev Med Child Neurol. 2011;53(7):585.

20 RosenbaumP, Gorter JW. The ‘F-words’ in childhood disability: I swear this is how we should think! Child Care Health Dev. 2012;38(4):457– 63.

21 Global Research on Developmental Disabilities Collaborators. De- velopmental 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(10):e1100–21.

22 Bayley N. Bayley scales of infant and toddler development. 3rd ed. London: Pearson; 2006.

23 Gladstone M, Lancaster GA, Umar E, et al. The Malawi Developmental Assessment Tool (MDAT): the creation, validation, and reliability of a tool to assess child development in rural African settings. PLoS Med. 2010;7(5):e1000273.

24 Abubakar A, Holding P, van Baar A, et al. Monitoring psychomotor de- velopment in a resource-limited setting: an evaluation of the Kilifi De- velopmental Inventory. Ann Trop Paediatr. 2008;28(3):217–26.

25 Milner KM, Bhopal S, Black M, et al. Counting outcomes, coverage and quality for early child development programmes. Arch Dis Child. 2019;104(Suppl 1):S13–21.

26 Sabanathan S, Wills B, Gladstone M. Child development assessment tools in low-income and middle-income countries: how can we use them more appropriately? Arch Dis Child. 2015;100(5):482–8.

27 Banks LM, Kuper H, Polack S. Poverty and disability in low- and middle-income countries: a systematic review. PLoS One. 2017;12(12):e0189996.

28 Black MM, Lawn JE. Early childhood developmental disabilities-data still needed. Lancet Glob Health. 2018;6(10):e1050–1.

29 World Health Organization. Developmental difficulties in early child- hood: prevention, early identification, assessment and intervention in low- and middle-income countries. Geneva: World Health Organiza- tion; 2012.

30 Jones L, Bellis MA, Wood S, et al. Prevalence and risk of vio- lence against children with disabilities: a systematic review and meta-analysis of observational studies. Lancet. 2012;380(9845): 899–907.

31 Zuurmond M, Nyante G, Baltussen M, et al. A support programme for caregivers of children with disabilities in Ghana: understanding

226

D ow

nloaded from https://academ

ic.oup.com /inthealth/article/13/3/222/5891235 by guest on 15 O

ctober 2024

International Health

the impact on the wellbeing of caregivers. Child Care Health Dev. 2019;45(1):45–53.

32 Scherer N, Verhey I, Kuper H. Depression and anxiety in parents of childrenwith intellectual anddevelopmental disabilities: a systematic review and meta-analysis. PLoS One. 2019;14(7):e0219888.

33 Tomlinson M, Darmstadt GL, Yousafzai AK, et al. Global research pri- orities to accelerate programming to improve early childhood devel- opment in the sustainable development era: a CHNRI exercise. J Glob Health 2019;9(3):020703.

34 McGovern ME, Krishna A, Aguayo VM, et al. A review of the evi- dence linking child stunting to economic outcomes. Int J Epidemiol. 2017;46(4):1171–91.

35 Luby JL. Poverty’smost insidious damage: the developing brain. JAMA Pediatr. 2015;169(9):810–1.

36 Murphy R, Jolley E, Lynch P, et al. Estimated prevalence of disability and developmental delay among preschool children in rural Malawi: findings from ‘Tikule Limodzi’, a cross-sectional survey. Child Care Health Dev. 2020;46(2):187–94.

37 Black MM, Perez-Escamilla R, Rao SF. Integrating nutrition and child development interventions: scientific basis, evidence of impact, and implementation considerations. Adv Nutr. 2015;6(6):852–9.

38 Lu C, Black MM, Richter LM. Risk of poor development in young chil- dren in low-income andmiddle-income countries: an estimation and analysis at the global, regional, and country level. Lancet Glob Health. 2016;4(12):e916–22.

39 Canavera K, Johnson L-M, Harman J. Beyond parenting: the respon- sibility of multidisciplinary health care providers in early intervention policy guidance. Am J Bioeth. 2018;18(11):58–60.

40 Collins PY, Pringle B, Alexander C, et al. Global services and support for childrenwith developmental delays and disabilities: bridging research and policy gaps. PLoS Med. 2017;14(9):e1002393.

41 Scherzer AL, Chhagan M, Kauchali S, et al. Global perspective on early diagnosis and intervention for children with developmental delays and disabilities. Dev Med Child Neurol. 2012;54(12):1079–84.

42 King S, Teplicky R, King G, et al. Family-centered service for children with cerebral palsy and their families: a review of the literature. Semin Pediatr Neurol. 2004;11(1):78–86.

43 Spittle A, Orton J, Anderson PJ, et al. Early developmental intervention programmes provided post hospital discharge to prevent motor and cognitive impairment in preterm infants. CochraneDatabase Syst Rev. 2015;11:CD005495.

44 Powell T. Early intervention. Briefing paper 7647. London: House of Commons Library; 2019.

45 McLinden M, Lynch P, Soni A, et al. Supporting children with disabili- ties in low- and middle- income countries: promoting inclusive prac- tice within community-based childcare centres in Malawi through a bioecological systems perspective. Int J Early Child. 2018;50(2):159– 74.

46 Countdown to 2030 Collaboration. Countdown to 2030: tracking progress towards universal coverage for reproductive,maternal, new- born, and child health. Lancet. 2018;391(10129):1538–48.

47 World Health Organization. The WHO Caregiver Skills Training programme. Available from: https://www.who.int/mental_health/ maternal-child/PST/en/.

48 Salomone E, Pacione L, Shire S, et al. Development of the WHO Care- giver Skills Training Program for developmental disorders or delays. Front Psychiatry. 2019;10:769.

49 Philip S, Chaturvedi SK. Musings on task shifting in mental health. J Psychosoc Rehabil Ment Health. 2018;5(2):103–7.

50 Hamdani SU, Akhtar P, Zill EH, et al. WHO Parents Skills Training (PST) programme for childrenwith developmental disorders and delays de- livered by family volunteers in rural Pakistan: study protocol for effec- tiveness implementation hybrid cluster randomized controlled trial. Glob Ment Health (Camb). 2017;4:e11.

51 World Health Organization. Training parents to transform chil- dren’s lives. Available from: https://www.who.int/mental_health/ maternal-child/PST/en/.

52 Masulani-Mwale C, Kauye F, Gladstone M, et al. Development of a psycho-social intervention for reducing psychological distress among parents of children with intellectual disabilities in Malawi. PLoS One. 2019;14(2):e0210855.

53 Benfer KA, Novak I, Morgan C, et al. Community-based parent- delivered early detection and intervention programme for infants at high risk of cerebral palsy in a low-resource country (Learning through Everyday Activities with Parents (LEAP-CP): protocol for a randomised controlled trial. BMJ Open. 2018;8(6):e021186.

54 LEAP-CP Symposium. Early detection and early intervention for chil- dren at risk of CP in low-middle income countries. Available from: https://cparf.org/sstposts/StoryId1579066413321.

55 Zuurmond M, O’Banion D, Gladstone M, et al. Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana. PLoS One. 2018;13(9): e0202096.

56 Nampijja M, Webb E, Nanyunja C, et al. Randomised controlled pilot feasibility trial of an early intervention programme for young infants with neurodevelopmental impairment in Uganda: a study protocol. BMJ Open. 2019;9(10):e032705.

57 Duttine A, Smythe T, Calheiro de Sá MR, et al. Development and as- sessment of the feasibility of a Zika family support programme: a study protocol. Wellcome Open Res. 2019;4:80.

58 Kuper H, Smythe T, Duttine A. Reflections on health promo- tion and disability in low and middle-income countries: case study of parent-support programmes for children with congeni- tal Zika syndrome. Int J Environ Res Public Health. 2018;15(3): 514.

59 Sa MRC, Vieira ACD, Castro BSM, et al. [The need to act together in every way possible: inter-sector action in health and education for children livingwith the congenital Zika syndrome]. Cad Saude Publica. 2019;35(12):e00233718.

60 Smythe T, Duttine A, Vieira ACD, et al. Engagement of fathers in par- ent group interventions for children with congenital Zika syndrome: a qualitative study. Int J Environ Res Public Health. 2019;16(20): 3862.

61 Rahman A, Divan G, Hamdani SU, et al. Effectiveness of the parent- mediated intervention for children with autism spectrum disorder in south Asia in India and Pakistan (PASS): a randomised controlled trial. Lancet Psychiatry. 2016;3(2):128–36.

62 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.

Appendix

227

D ow

nloaded from https://academ

ic.oup.com /inthealth/article/13/3/222/5891235 by guest on 15 O

ctober 2024

T. Smythe et al.

Table A1. Completed clinical trials with a focus on developmental outcomes

Title Start date Country

Target children with disabilities

Includes children with disabilities

Does not include or exclude

Excludes children with disabilities

1 The Pakistan Early Childhood Development Scale Up Trial

2009 Pakistan 1

2 Iron Treatment for Young Children With Non-anemic Iron Deficiency

2012 Canada 1

3 Project Grow Smart: Intervention Trial of Multiple Micronutrients and Early Learning Among Infants in India

2012 India 1

4 Early Child Development and Nutrition in Guatemala 2015 Guatemala 1 5 Strong Families, Thriving Children “Sugira

Muryango”_Activity C 2018 Rwanda 1

6 Implementation and Adoption of Care for Child Development in Day Care Centers

2015 Lebanon 1

7 CASITA Intervention for Children at Risk of Delay in Carabayllo, Peru

2013 Peru 1

8 Family Inclusive Early Brain Stimulation 2014 Nigeria 1 9 Applying Mindfulness for Economically Disadvantaged

Families 2016 Hong Kong 1

10 Promoting Child Development Practices in the First Year of Life Through a Video Administered at Two Different Times

2008 Italy 1

11 Promoting Early School Readiness in Primary Health Care

2005 USA 1

12 Improving Early Childhood Development in Zambia 2014 Zambia 1 13 Early Intervention for Developmental Delay 2014 Taiwan 1 14 A Family Centered Intervention to Promote Optimal

Child Development 2013 USA 1

15 Family Strengthening Intervention for Early Childhood Development (ECD)

2014 Rwanda 1

16 Screening for Therapy and Empowering Parents: A Pilot Study

2015 USA 1

17 Alliance for Family Strengthening: Improved Early Childhood Development in Rwanda

2017 Rwanda 1

18 Efficacy of Tools of the Mind for Enhancing Self-Control in Preschoolers

2012 Canada 1

19 Early Literacy Promotion Intervention 2016 USA 1 20 Zinc and Biobehavioral Development in Early

Childhood 2004 Peru 1

21 The Effect of a Cash Transfer Program and Preventive Nutrition Packages on Household Welfare and Child Nutritional Status in Mali

2014 Mali 1

22 Enhancing Ugandan HIV-Affected Child Development With Caregiver Training

2012 Uganda 1

23 Early Intervention for Preterm Infants 2006 Taiwan 1 24 Effect of Improving Caregiving on Early Mental Health 2000 Russia 1 25 Testing the Effectiveness of Telephone-based Early

Childhood Developmental Screening 2015 USA 1

26 Early Family-Centered Prevention of Drug Use Risk (Aka Early Steps)

2003 USA 1

27 Effect of Power Wheelchairs on the Development and Function of Young Children With Severe Physical Disabilities

2002 USA 1

Continued

228

D ow

nloaded from https://academ

ic.oup.com /inthealth/article/13/3/222/5891235 by guest on 15 O

ctober 2024

International Health

Table A1. Continued

Title Start date Country

Target children with disabilities

Includes children with disabilities

Does not include or exclude

Excludes children with disabilities

28 Effect of Community Based Depression Management and Child Development

2014 Bangladesh 1

29 Play and Pre-Literacy Among Young Children 2015 Canada 1 30 Social and Communication Outcomes for Young

Children With Autism 2009 USA 1

31 The Anemia Control Program: Early Intervention 1992 Chile 1 32 Early Psychosocial Stimulation Program for Children of

Depressed Mothers 2009 Pakistan 1

33 Promoting Infant Mental Health in Foster Care 2007 USA 1 34 Addressing Systemic Health Disparities in Early

Identification and Treatment of Autism Spectrum Disorder (ASD): ABCD Project

2014 USA 1

35 The MOM Program at the Children’s Hospital of Philadelphia

2001 USA 1

36 Translating Evidence Based Developmental Screening Into Pediatric Primary Care

2008 USA 1

37 Improving Parental Psychosocial Functioning and Early Developmental Outcomes in Children With Sickle Cell Disease

2014 West Indies 1

38 Promoting Healthy Development With the Recipe 4 Success Intervention

2013 USA 1

39 Long Term Effect of Early Iron Supplementation and Psychosocial Stimulation on Growth and Development of Iron-deficient Anaemic Infants

2015 Bangladesh 1

40 Reduce Childhood Maltreatment and Promote Development

2015 Bangladesh 1

41 The Impact of Cash and Food Transfers Linked to Preschool Enrollment on Child Nutrition and Cognitive Outcomes

2010 Uganda 1

42 Effects of Family-Centered Intervention for Preterm Infants at Preschool Age

2015 Taiwan 1

43 Effectiveness of Parent-Child Interaction and Emotion Development Therapy in Treating Preschool Children With Depression

2007 USA 1

44 The Effects of Iodized Salt on Cognitive Development in Ethiopia

2011 Ethiopia 1

45 An Intervention for Enhancing Early Attachment in Primary Health Care

2013 Chile 1

46 The MOM Program: 5 Year Follow-up Study of a Home Visiting Program at the Children’s Hospital of Philadelphia

2004 USA 1

47 Small Step Intervention for Infants With Cerebral Palsy and Other Neurodevelopmental Disorders

2014 Sweden 1

48 Intervention Effects of Intensity and Delivery Style for Toddlers With Autism

2008 USA 1

49 Motivational Interviewing to Increase Parent Engagement in Preventive Parenting Programming

2013 USA 1

50 Intensive Intervention for Toddlers With Autism (EARLY STEPS)

2013 USA 1

51 Optimizing Social and Communication Outcomes for Toddlers With Autism

2008 USA 1

Continued

229

D ow

nloaded from https://academ

ic.oup.com /inthealth/article/13/3/222/5891235 by guest on 15 O

ctober 2024

T. Smythe et al.

Table A1. Continued

Title Start date Country

Target children with disabilities

Includes children with disabilities

Does not include or exclude

Excludes children with disabilities

52 Primary Prevention of Allergic Disease in Early Child by Lactobacillus reuteri

2001 Sweden 1

53 Intervention for Toddlers at Risk for Autism Spectrum Disorders (ASD)

2008 USA 1

54 Promoting Development in Toddlers With Communication Delays

2007 USA 1

55 Early Intervention, Supervision, Quality and Outcome in ASD

2013 Sweden 1

56 Differential DNA Methylation as a Function of a Parenting Intervention

2013 USA 1

57 Early Connections, Early Detection and Intervention in Infants at Risk for Autism

2008 USA 1

58 Early Characteristics of Autism 2003 USA 1 59 School- and Home-Based Early Intervention for

Toddlers With Autism 2003 USA 1

60 Follow-up of Families in Early Preventive Intervention 2000 USA 1 61 Parent Training Program for Preschool Children With

Autism Spectrum Disorders 2015 Taiwan 1

62 RESPECT-PLUS: Services for Infants With Prenatal Opiate Exposure

2013 USA 1

63 Early Nutritional Intervention in Patients With Autism Spectrum Disorders

2010 Qatar 1

64 Maximizing Language Development in Children With Hearing Loss

2013 USA 1

65 Mother and Child Education Program in Palestinian Refugee Camps

2014 Lebanon 1

66 Early Intervention and Autism: Transformation From Research to Practice Through a Competency Based Model

2017 Sweden 1

67 Mindfulness Training and Parent-coaching Interventions for Autism Spectrum Disorder

2015 USA 1

68 Impact of an Intervention Program on Parenting Stress After Preterm Birth

2006 France 1

69 Efficacy Trial of the Kids in Transition to School (KITS) Program for Children With Developmental Disabilities and Behavioral Problems

2008 USA 1

70 Social-emotional Under 4’s Screening & Intervention S.U.S.I.

2016 USA 1

71 H3: Healthy Minds, Healthy Children, Healthy Chicago Project Evaluation

2014 UK 1

72 Reproducibility Inter-session of the Measurement Elastography of the Passive Stiffness of Medial Beams of Gastrocnemius Muscle of the Hemiplegic Cerebral Child

2017 France 1

73 Transition to Scale of Nutrition and Psychosocial Stimulation Program for Malnourished Children

2014 Bangladesh 1

74 Electronic Patient-reported Outcomes (e-PROs) in Early Intervention

2016 USA 1

75 Iron Deficiency Anemia and Psychosocial Stimulation 2007 Bangladesh 1

Continued

230

D ow

nloaded from https://academ

ic.oup.com /inthealth/article/13/3/222/5891235 by guest on 15 O

ctober 2024

International Health

Table A1. Continued

Title Start date Country

Target children with disabilities

Includes children with disabilities

Does not include or exclude

Excludes children with disabilities

76 Omega Tots: A Randomized, Controlled Trial of Long-chain Polyunsaturated Fatty Acid Supplementation of Toddler Diets and Developmental Outcomes

2012 USA 1

77 Zinc, Iron, Vitamin A and Psychosocial Care for Child Growth and Development

1998 Indonesia 1

78 Middle Ear Disease Before Age 3, Treatment With Ear Tubes, and Literacy and Attentional Abilities at Ages 9 to 11

2002 USA 1

79 The Effect of a Deworming Intervention to Improve Early Childhood Growth and Development in Resource-poor Areas

2014 USA 1

80 Comparing Parent-Implemented Interventions for Toddlers With Autism Spectrum Disorders

2007 USA 1

81 Strengthening Families and Reducing Risk Thru Developmental and Legal Collaboration

2011 USA 1

82 Social Cognitive Development in Young Children With Autism

2012 USA 1

83 Evaluation of the Healthy Families Alaska Program 1999 USA 1 84 Initial Efficacy Study of Supporting Play, Exploration, &

Early Development Intervention 2011 USA 1

85 Healthy Habits, Happy Homes: An Intervention to Improve Household Routines for Obesity Prevention

2011 USA 1

86 Age 12 Follow-up of Early Preventive Intervention (Memphis)

2003 USA 1

87 Project ASPIRE Efficacy Pilot: Achieving Superior Parental Involvement for Rehabilitative Excellence

2009 USA 1

88 Interventions for Communication in Autism Network 2012 USA 1 89 The Effects of a Parental Intervention on Electronic

Media Exposure and Sleep Patterns in Adolescents 2011 Israel 1

90 A Trial of Sertraline in Young Children With Autism Spectrum Disorder

2015 USA 1

91 A Randomized Controlled Trial of PCIT-ED for Preschool Depression

2014 USA 1

92 Psychomotor Therapy for Very Premature Infants 2007 France 1 93 A Website to Teach Children Safety With Dogs 2015 USA 1 94 Early Physical Therapy Intervention in Preterm Infants 2017 Spain 1 95 The Children in Action Feasibility Study 2007 USA 1 96 Development of Appetite Measuring Tool and Appetite

Status of Stunted Children 2016 Bangladesh 1

97 Early Pharmacotherapy Aimed at Neuroplasticity in Autism: Safety and Efficacy

2004 USA 1

98 Study and Development of Application Models of “Therapeutic Education to the Patient” (TEP) in Asthmatic Children

2007 Italy 1

99 Development and Effectiveness of Home-based Programs for Preschool Children With Developmental Delay

2017 USA 1

100 Digital Literacy Promotion 2016 Bangladesh 1 TOTAL 4 21 25 50

231

D ow

nloaded from https://academ

ic.oup.com /inthealth/article/13/3/222/5891235 by guest on 15 O

ctober 2024