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Early Intervention For Children With Developmental Disabilities in Low and Middle-Income Countries - The Case For Action
Early Intervention For Children With Developmental Disabilities in Low and Middle-Income Countries - The Case For Action
a
International Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine, London, WC1E 7HT, UK; b Maternal,
Adolescent, Reproductive and Child Health Centre, London School of Hygiene & Tropical Medicine, London, WC1E 7HT, UK; c MRC/UVRI &
LSHTM Uganda Research Unit, Entebbe, Uganda; d Institute of Translational Medicine, University of Liverpool, Liverpool, L69 7TX, UK
∗ Corresponding author: Tel: +44 20 7636 8636; E-mail: tracey.smythe@lshtm.ac.uk
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.
© 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.
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trials are currently under way in India.54 The trial also provides availability of funding for developing services. Ensuring inclusive
nutrition and health support to all families in the study, which education is a clear responsibility for United Nations member
may influence the findings. states under international treaties and Sustainable Development
The London School of Hygiene & Tropical Medicine (UK) has de- Goal 4, to ‘ensure inclusive, equitable quality education for all’.
veloped three caregiver group interventions under the ‘Ubuntu’ However, investing in inclusion prior to schooling is not mandated
umbrella (resources available from www.ubuntu-hub.org). The and consequently becomes optional. Cultural challenges also ex-
interventions consist of 10 sessions, the content of which includes ist, such as widespread stigma and discrimination around chil-
information about essential care practices, such as feeding, posi- dren with disabilities and their families.62 Finally, the evidence
tioning, communication and play, offered through a local support base on needs for and effectiveness of services is currently weak
group format. ‘Getting to know cerebral palsy’ was developed as and needs to be strengthened. Enhancing environments that pro-
a resource to empower families using a participatory approach vide equal opportunities for children with developmental disabil-
at the community level.31,55 The ABAaNA Early Intervention Pro- ities for ECI therefore requires a systems approach with global
gramme (EIP) was developed in response to a recognised need collaboration.
to support families of very young children (<2 y) with an evolv- Accordingly, priorities for future research to ensure that all
ing developmental disability.56 ‘Juntos’ was developed for chil- young children reach their development potential include as-
dren with congenital Zika syndrome and their families in Latin sessment of the effect of interventions for children with devel-
America and integrates a strengthened component on caregiver opmental disability and their families in different low-resource
emotional well-being, arguably fundamental to a child’s early settings. Further identification of barriers to accessing general
development.57–60 services (e.g. primary healthcare) as well as specialist services
Interventions for children with autism spectrum disorder in- is also required, as poverty remains a major issue for affected
clude PASS, a parent-mediated intervention for autism spec- families in LMICs. Furthermore, studies that identify how to max-
trum disorder in India and Pakistan.61 The intervention uses imise the reach and cost-effectiveness of ECD interventions for
video feedback methods to address parent–child interaction children with developmental disabilities are warranted. Evalua-
and was adapted for delivery by non-specialist workers. As tion of how these interventions can be embedded within health
PASS is focused on improving a child’s social communica- systems are needed to strengthen the service delivery strate-
tion, common mental health comorbidities such as sleep dif- gies. Global collaboration in these efforts are required in research,
ficulties will be important to integrate into wider intervention and critical steps include providing best evidence on practices
programmes. to improve knowledge and skills at local levels to avoid chil-
These examples provide good case studies of diverse inter- dren with developmental disabilities being turned away from
ventions for different children with developmental disabilities in existing services and evidence of ‘what works’ to provide sus-
different low-resource settings. These case studies indicate that tainable, inclusive ECD interventions with impact in resource-
in LMICs, the gap in meeting the holistic needs of children with constrained settings. We call for international research communi-
developmental disabilities may be addressed through the use of ties, including funders, to adopt a systematic approach for better
community-based group interventions facilitated by trained and evidence.
supervised health or peer support workers. 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
Conclusion
implementation with education and social welfare, which ham- ECD interventions are aimed at improving the development of
pers scaling of these services. 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
The case for action
this marginalised group and an even greater lack of evidence on
The number of children with developmental disabilities is large cost-effectiveness and what can be successfully implemented at
and the impacts on the child and family are extensive. There scale. A two-pronged approach is likely to be optimal, encourag-
are valuable lessons learned from case studies, yet there re- ing the inclusion of children with disabilities in mainstream ECD
mains insufficient progress in ECI for children with developmen- programmes, while also offering targeted approaches, most likely
tal disabilities and unmet needs are widespread. The causes of through caregivers. We call for global collaboration among inter-
this gap are complex and diverse. An important reason is that national research communities, including funders, to adopt a sys-
in many settings health services are often fragile, poorly co- tematic approach to strengthening the available evidence base
ordinated and overstrained, with concerns about the availabil- of interventions for children with developmental disabilities and
ity and quality of healthcare workers capable of delivering the their families. We call for greater attention for this marginalised
intervention. Health systems gaps are particularly important in group, to prioritise public policies and hold governments account-
fragile states, including those affected by war and famine, as able to ensure that multisectoral services centred around the
they experience many competing pressing needs. Furthermore, child and his/her family are provided during this crucial time. This
the policy agenda supporting a focus on children with devel- will contribute to ensuring that all children have an early founda-
opmental disabilities is weak internationally and nationally in tion for optimal development, a key factor in equitable long-term
many cases, limiting the priority given to this issue and the health.
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12 Aboud FE, Yousafzai AK. Global health and development in early child-
hood. Annu Rev Psychol. 2015;66:433–57.
Author’s contributions: HK conceived the study. TS carried out the
13 Institute of Medicine, National Research Council. Transforming the
analysis and interpretation of case study data. TS and HK drafted the
workforce for children birth through age 8: a unifying foundation.
manuscript. MZ, CJT, MG and HK critically revised the manuscript for in-
Washington, DC: National Academies Press; 2015.
tellectual content. All authors read and approved the final manuscript. TS
and HK are guarantors of the paper. The data underlying this article are 14 Engle PL, Black MM, Behrman JR, et al. Strategies to avoid the loss
available in the article and in its online supplementary material. of developmental potential in more than 200 million children in the
developing world. Lancet. 2007;369(9557):229–42.
Acknowledgements: None. 15 World Health Organization. Nurturing care framework. Geneva: World
Health Organization; 2018.
Funding: This work was supported by the Wellcome Trust and Depart- 16 Gove A, Black MM. Measurement of early childhood development and
ment for International Development (grant 206719/Z/17/Z to HK). The learning under the Sustainable Development Goals. J Hum Dev Capa-
funders had no role in the study design, data collection and analysis, de- bil. 2016;17(4):599–605.
cision to publish or preparation of the manuscript.
17 Daelmans B, Darmstadt GL, Lombardi J, et al. Early childhood de-
velopment: the foundation of sustainable development. Lancet.
Competing interests: MG is a member of expert panels for the WHO and 2017;389(10064):9–11.
UNICEF on measurement of childhood development and disability. This
research paper was undertaken outside and separate from these duties. 18 Boggs D, Milner KM, Chandna J, et al. Rating early child development
outcome measurement tools for routine health programme use. Arch
Dis Child. 2019;104(Suppl 1):S22–33.
Ethical approval: Not required.
19 Wong VCN. Global developmental delay – a delay in development of
terminology. Dev Med Child Neurol. 2011;53(7):585.
20 Rosenbaum P, Gorter JW. The ‘F-words’ in childhood disability: I swear
References this is how we should think! Child Care Health Dev. 2012;38(4):457–
63.
1 Olusanya BO, de Vries PJ, Olusanya BO, et al. Nurturing care for chil-
dren with developmental disabilities: a moral imperative for sub- 21 Global Research on Developmental Disabilities Collaborators. De-
Saharan Africa. Lancet Child Adolesc Health. 2018;2(11):772–4. velopmental disabilities among children younger than 5 years in
195 countries and territories, 1990–2016: a systematic analysis
2 United Nations. Convention on the Rights of the Child 1989. Available
for the Global Burden of Disease Study 2016. Lancet Glob Health.
from: http://www2.ohchr.org/english/law/crc.htm.
2018;6(10):e1100–21.
3 United Nations Committee on the Rights of Persons with Disabili-
22 Bayley N. Bayley scales of infant and toddler development. 3rd ed.
ties. Report of the Committee on the Rights of Persons with Dis-
London: Pearson; 2006.
abilities: First session (23–27 February 2009), Second session (19–23
October 2009), Third session (22–26 February 2010), Fourth session 23 Gladstone M, Lancaster GA, Umar E, et al. The Malawi Developmental
(4–8 October 2010). Available from: https://www.refworld.org/docid/ Assessment Tool (MDAT): the creation, validation, and reliability of a
4eef033a2.html [accessed 27 February 2020]. tool to assess child development in rural African settings. PLoS Med.
2010;7(5):e1000273.
4 MAL-ED Network Investigators. Early childhood cognitive develop-
ment is affected by interactions among illness, diet, enteropathogens 24 Abubakar A, Holding P, van Baar A, et al. Monitoring psychomotor de-
and the home environment: findings from the MAL-ED birth cohort velopment in a resource-limited setting: an evaluation of the Kilifi De-
study. BMJ Glob Health. 2018;3(4):e000752. velopmental Inventory. Ann Trop Paediatr. 2008;28(3):217–26.
5 Walker SP, Wachs TD, Grantham-McGregor S, et al. Inequality in early 25 Milner KM, Bhopal S, Black M, et al. Counting outcomes, coverage
childhood: risk and protective factors for early child development. and quality for early child development programmes. Arch Dis Child.
Lancet. 2011;378(9799):1325–38. 2019;104(Suppl 1):S13–21.
6 Britto PR, Lye SJ, Proulx K, et al. Nurturing care: promoting early child- 26 Sabanathan S, Wills B, Gladstone M. Child development assessment
hood development. Lancet. 2017;389(10064):91–102. tools in low-income and middle-income countries: how can we use
them more appropriately? Arch Dis Child. 2015;100(5):482–8.
7 Black MM, Walker SP, Fernald LCH, et al. Early childhood devel-
opment coming of age: science through the life course. Lancet. 27 Banks LM, Kuper H, Polack S. Poverty and disability in low-
2017;389(10064):77–90. and middle-income countries: a systematic review. PLoS One.
2017;12(12):e0189996.
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. 28 Black MM, Lawn JE. Early childhood developmental disabilities-data
still needed. Lancet Glob Health. 2018;6(10):e1050–1.
9 Richter L, Black M, Britto P, et al. Early childhood development: an
imperative for action and measurement at scale. BMJ Glob Health. 29 World Health Organization. Developmental difficulties in early child-
2019;4(Suppl 4):e001302. hood: prevention, early identification, assessment and intervention in
low- and middle-income countries. Geneva: World Health Organiza-
10 Aguilera Vasquez N, Daher J. Do nutrition and cash-based interven-
tion; 2012.
tions and policies aimed at reducing stunting have an impact on eco-
nomic development of low-and-middle-income countries? A system- 30 Jones L, Bellis MA, Wood S, et al. Prevalence and risk of vio-
atic review. BMC Public Health. 2019;19(1):1419. lence against children with disabilities: a systematic review and
meta-analysis of observational studies. Lancet. 2012;380(9845):
11 Engle PL, Fernald LC, Alderman H, et al. Strategies for reduc-
899–907.
ing inequalities and improving developmental outcomes for young
children in low-income and middle-income countries. Lancet. 31 Zuurmond M, Nyante G, Baltussen M, et al. A support programme
2011;378(9799):1339–53. for caregivers of children with disabilities in Ghana: understanding
226
International Health
the impact on the wellbeing of caregivers. Child Care Health Dev. 49 Philip S, Chaturvedi SK. Musings on task shifting in mental health. J
2019;45(1):45–53. Psychosoc Rehabil Ment Health. 2018;5(2):103–7.
32 Scherer N, Verhey I, Kuper H. Depression and anxiety in parents of 50 Hamdani SU, Akhtar P, Zill EH, et al. WHO Parents Skills Training (PST)
children with intellectual and developmental disabilities: a systematic programme for children with developmental disorders and delays de-
review and meta-analysis. PLoS One. 2019;14(7):e0219888. livered by family volunteers in rural Pakistan: study protocol for effec-
33 Tomlinson M, Darmstadt GL, Yousafzai AK, et al. Global research pri- tiveness implementation hybrid cluster randomized controlled trial.
orities to accelerate programming to improve early childhood devel- Glob Ment Health (Camb). 2017;4:e11.
opment in the sustainable development era: a CHNRI exercise. J Glob 51 World Health Organization. Training parents to transform chil-
Health 2019;9(3):020703. dren’s lives. Available from: https://www.who.int/mental_health/
34 McGovern ME, Krishna A, Aguayo VM, et al. A review of the evi- maternal-child/PST/en/.
dence linking child stunting to economic outcomes. Int J Epidemiol. 52 Masulani-Mwale C, Kauye F, Gladstone M, et al. Development of a
2017;46(4):1171–91. psycho-social intervention for reducing psychological distress among
35 Luby JL. Poverty’s most insidious damage: the developing brain. JAMA parents of children with intellectual disabilities in Malawi. PLoS One.
Pediatr. 2015;169(9):810–1. 2019;14(2):e0210855.
36 Murphy R, Jolley E, Lynch P, et al. Estimated prevalence of disability 53 Benfer KA, Novak I, Morgan C, et al. Community-based parent-
and developmental delay among preschool children in rural Malawi: delivered early detection and intervention programme for infants at
findings from ‘Tikule Limodzi’, a cross-sectional survey. Child Care high risk of cerebral palsy in a low-resource country (Learning through
Health Dev. 2020;46(2):187–94. Everyday Activities with Parents (LEAP-CP): protocol for a randomised
controlled trial. BMJ Open. 2018;8(6):e021186.
37 Black MM, Perez-Escamilla R, Rao SF. Integrating nutrition and child
development interventions: scientific basis, evidence of impact, and 54 LEAP-CP Symposium. Early detection and early intervention for chil-
implementation considerations. Adv Nutr. 2015;6(6):852–9. dren at risk of CP in low-middle income countries. Available from:
https://cparf.org/sstposts/StoryId1579066413321.
38 Lu C, Black MM, Richter LM. Risk of poor development in young chil-
dren in low-income and middle-income countries: an estimation and 55 Zuurmond M, O’Banion D, Gladstone M, et al. Evaluating the
analysis at the global, regional, and country level. Lancet Glob Health. impact of a community-based parent training programme for
2016;4(12):e916–22. children with cerebral palsy in Ghana. PLoS One. 2018;13(9):
e0202096.
39 Canavera K, Johnson L-M, Harman J. Beyond parenting: the respon-
sibility of multidisciplinary health care providers in early intervention 56 Nampijja M, Webb E, Nanyunja C, et al. Randomised controlled pilot
policy guidance. Am J Bioeth. 2018;18(11):58–60. feasibility trial of an early intervention programme for young infants
with neurodevelopmental impairment in Uganda: a study protocol.
40 Collins PY, Pringle B, Alexander C, et al. Global services and support for BMJ Open. 2019;9(10):e032705.
children with developmental delays and disabilities: bridging research
and policy gaps. PLoS Med. 2017;14(9):e1002393. 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
41 Scherzer AL, Chhagan M, Kauchali S, et al. Global perspective on early study protocol. Wellcome Open Res. 2019;4:80.
diagnosis and intervention for children with developmental delays
and disabilities. Dev Med Child Neurol. 2012;54(12):1079–84. 58 Kuper H, Smythe T, Duttine A. Reflections on health promo-
tion and disability in low and middle-income countries: case
42 King S, Teplicky R, King G, et al. Family-centered service for children study of parent-support programmes for children with congeni-
with cerebral palsy and their families: a review of the literature. Semin tal Zika syndrome. Int J Environ Res Public Health. 2018;15(3):
Pediatr Neurol. 2004;11(1):78–86. 514.
43 Spittle A, Orton J, Anderson PJ, et al. Early developmental intervention 59 Sa MRC, Vieira ACD, Castro BSM, et al. [The need to act together in
programmes provided post hospital discharge to prevent motor and every way possible: inter-sector action in health and education for
cognitive impairment in preterm infants. Cochrane Database Syst Rev. children living with the congenital Zika syndrome]. Cad Saude Publica.
2015;11:CD005495. 2019;35(12):e00233718.
44 Powell T. Early intervention. Briefing paper 7647. London: House of 60 Smythe T, Duttine A, Vieira ACD, et al. Engagement of fathers in par-
Commons Library; 2019. ent group interventions for children with congenital Zika syndrome:
45 McLinden M, Lynch P, Soni A, et al. Supporting children with disabili- a qualitative study. Int J Environ Res Public Health. 2019;16(20):
ties in low- and middle- income countries: promoting inclusive prac- 3862.
tice within community-based childcare centres in Malawi through a 61 Rahman A, Divan G, Hamdani SU, et al. Effectiveness of the parent-
bioecological systems perspective. Int J Early Child. 2018;50(2):159– mediated intervention for children with autism spectrum disorder in
74. south Asia in India and Pakistan (PASS): a randomised controlled trial.
46 Countdown to 2030 Collaboration. Countdown to 2030: tracking Lancet Psychiatry. 2016;3(2):128–36.
progress towards universal coverage for reproductive, maternal, new- 62 Smythe T, Adelson JD, Polack S. Systematic review of interventions
born, and child health. Lancet. 2018;391(10129):1538–48. for reducing stigma experienced by children with disabilities and their
47 World Health Organization. The WHO Caregiver Skills Training families in low- and middle-income countries: state of the evidence.
programme. Available from: https://www.who.int/mental_health/ Trop Med Int Health. 2020;25:508–24.
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. Appendix
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Excludes
Target Includes Does not children
Start children with children with include or with
Title date Country disabilities disabilities exclude disabilities
Continued
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Target Includes Does not children
Start children with children with include or with
Title date Country disabilities disabilities exclude disabilities
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Target Includes Does not children
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Title date Country disabilities disabilities exclude disabilities
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