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CHILD AND ADOLESCENT HEALTH AND DEVELOPMENT  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■




                                                                                                          DEVELOPMENTAL
                                                                                                          DIFFICULTIES IN
                                                                                                          EARLY CHILDHOOD
                                                                                                          Prevention, early identification,
                                                                                                          assessment and intervention in
                                                                                                          low- and middle-income countries
                                                                                                          A REVIEW
	CAH
WHO Library Cataloguing-in-Publication Data
    Developmental difficulties in early childhood: prevention, early identification, assessment and
    intervention in low- and middle-income countries: a review.
    1.Child development. 2.Child welfare. 3.Child health services. 4.Health promotion. 5.Developing
    countries. I.Ertem, Ilgi Ozturk. II.World Health Organization.
    ISBN 978 92 4 150354 9	                                        (NLM classification: WS 105)




© World Health Organization 2012
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Design by minimum graphics
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Printed in Turkey
CONTENTS




Acknowledgements		                                                                       v

Chapter 1.	 Introduction and overview	                                                  1
	           Scope of the review	                                                        2
	Terminology	                                                                           2
	           The WHO Developmental Difficulties in Early Childhood Survey	               3
		               Construction of the survey 	                                           3
		               Identification of respondents	                                         3
		               Limitations of the survey	                                             4
		               Outline of chapters 	                                                  4

Chapter 2.	 Early childhood development and health care systems	                         6
	           Purpose of chapter and additional key references	                            6
	           Conceptualization of child development	                                      7
		               The importance of the early years	                                      8
	           The role of the health care system	                                          9
	           Summary of research	                                                        10
		               The role of primary health care	                                       11
		               Developmental–behavioural paediatrics	                                 12
	           Conclusions and implications for action	                                    13

Chapter 3.	 Epidemiology of developmental difficulties in young children	               14
	           Purpose of chapter and additional key references	                           14
	Conceptualization	                                                                     14
	           Summary of research from LAMI countries	                                    14
	           Conclusions and implications for action	                                    17

Chapter 4.	 Developmental risks and protective factors in young children	               18
	           Purpose and scope of chapter	                                               18
	           Conceptualization of risk and protective factors	                           18
		              Resilience and protective factors	                                      18
		              Risk factors	                                                           19
		              The life-cycle approach to developmental risk factors	                  20
	           Summary of research from LAMI countries	                                    21
		              Resilience and protective factors in young children	                    21
		              Risk factors in young children	                                         22
	           Conclusions and implications for action	                                    31

Chapter 5.	 Prevention of developmental difficulties	                                   33
	           Purpose of chapter and additional key resources	                            33
	Conceptualization	                                                                     34
		              A model for preventing developmental difficulties in early childhood	   34
	           Research in LAMI countries	                                                 35




                                                 iii
DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD




	 An exemplary model from a developing country: the WHO/UNICEF Care for
		    Child Development Intervention	                                                           38
	 Conclusions and implications for action	                                                      39

Chapter 6.	 Early detection of developmental difficulties	                                      41
	           Purpose of chapter	                                                                 41
	Conceptualization	                                                                             41
	           Research in LAMI countries	                                                         42
	           An example from a developing country	                                               47
	           Conclusions and implications for action	                                            50

Chapter 7.	 Developmental assessment of young children	                                         51
	           Purpose of chapter and additional key references	                                   51
	Conceptualization	                                                                             51
	           Research in LAMI countries	                                                         53
		              Assessment processes	                                                           53
		              Assessment instruments	                                                         54
	           Conclusions and implications for action	                                            57

Chapter 8.	 International classifıcation systems for developmental difficulties
	           in young children	                                                                  59
	           Purpose and scope of the chapter and additional key resources	                      59
	Conceptualization	                                                                             59
		               The Diagnostic Classification of Mental Health and Developmental Disorders
		  of Infancy and Early Childhood	                                                             60
		               The International Classification of Diseases	                                  61
		               International Classification of Functioning, Disability, and Health	           61
		               Application of classification systems	                                         62
		               Strengths of the classification systems and areas that require improvement	    63
	           Research in LAMI countries	                                                         65
	           Conclusions and implications	                                                       65

Chapter 9.	 Early intervention (EI)	                                                            67
	           Purpose and scope of the chapter and additional key resources	                      67
	Conceptualization	                                                                             68
		              What are EI services?	                                                          69
		              Who are EI services for?	                                                       69
		              What major improvements are needed in the conceptualization of EI?	             70
		              Evidence-based best practices in early intervention	                            71
	           Summary of research in LAMI countries	                                              71
		              Important questions for future research	                                        74
	           An exemplary model from LAMI countries	                                             75
	           Conclusions and implications for action	                                            77

Chapter 10.	 From prevention to intervention: consensus of experts	                             78
	            Advancing policy related to developmental difficulties in early childhood at
		                national levels	                                                              78
	            Bringing down barriers using common international approaches and platforms	        79
	            Increasing local capacity by training personnel	                                   79
	            Increasing capacity in other specialities related to developmental difficulties	   80
	            Empowering caregivers	                                                             80
	            Conducting research 	                                                              80

References				                                                                                   81
Annex 1				                                                                                     101




                                                   iv
ACKNOWLEDGEMENTS




T    he World Health Organization wishes to express its deep gratitude to the author of this review,
     Dr Ilgi Ozturk Ertem, Professor of Pediatrics, Director, Developmental-Behavioral Pediatrics Divi-
sion, Ankara University School of Medicine, Ankara, Turkey, and visiting professor (2006–2007) at Yale
University School of Medicine Department of Pediatrics, New Haven, CT, USA.
   The project was led and supervised by Dr Meena Cabral de Mello, Senior Scientist, Department of
Maternal, Newborn, Child and Adolescent Health, WHO, Geneva.
   This document was reviewed internally by members of the WHO Department of Child and Adolescent
Health and the Disability and Rehabilitation Team, and externally by international experts in the field
including: Dr Vibha Krishnamurty, Director, Ummeed Child Development Centre, Mumbai, India; Profes-
sor Nicholas Lennox, Director, Queensland Centre for Intellectual and Developmental Disability, Brisbane,
Australia; Dr Shamim Muhammed, Sangath Organization, Goa, India; Dr Olayinka Omigbodun, Depart-
ment of Psychiatry, University of Ibadan, Ibadan, Nigeria; Professor Trevor R Parmenter, Director, Centre
for Developmental Disability Studies, Sydney, Australia; Professor Atif Rahman, Chair, Department of Child
Psychiatry, University of Liverpool, Liverpool, England; Dr Chiara Servili, WHO Eritrea Country Office
Asmara (2008); Professor Rune Simeonsson, Professor of School Psychology and Early Childhood Educa-
tion, University of North Carolina, Chapel Hill, USA; Dr Aisha Yousafzai, Child Health and Disability, Aga
Khan University Human Development Program and Aga Khan University Medical College, Department of
Paediatrics and Child Health, Karachi, Pakistan, and Dr Nurper Ulkuer, Chief, Early Childhood Develop-
ment Unit/PDO, United Nations Children’s Fund, USA.
   Federico Montero and Alana Officer, WHO Disability and Rehabilitation Team, Dr Mercedes de Onis,
WHO Department of Nutrition and Dr Tarun Dua, WHO Department of Mental Health provided invalu-
able comments and suggestions.
   Thanks are due to Professor Michael Guralnick (President of the International Society of Early Interven-
tion), Professor David J Schonfeld (past President of the Society of Developmental Behavioral Pediatrics and
director of the Developmental Behavioral Pediatrics Division, Cinninnati Children’s Hospital), Professor
Matthew Melmed (Director of Zero to Three), and Drs John M Levental, Brian Forsyth and Carol Weitz-
man (Yale University School of Medicine) for their review and comments on the survey, Developmental
Difficulties in Early Childhood.
   Dr Ertem’s consultations with Professor Barry Zuckerman (Chairman of Pediatrics, Boston University
School of Medicine, Boston, USA), for this review was supported by a Leadership Development, Fellow’s
Collaboration grant from Zero to Three. We also thank Zero to Three for providing the gift of an issue of
Zero to Three Journal for the respondents of the survey.
   Most importantly, we are grateful to the numerous experts around the world for their invaluable con-
tributions to the Developmental Difficulties in Early Childhood Survey. These include:
Argentina: Horacio Lejerraga, MD, Head of Depart­ment of Growth and Development. Hospital de Pediatría
  Garrahan. Buenos Aires, Argentina. hlejarraga@garrahan.gov.ar
Australia: Frank Oberklaid, MD, Professor, Centre for Community Child Health, Royal Children’s Hospital,
  Melbourne, Victoria, Australia. frank.oberklaid@rch.org.au
Bangladesh: Naila Khan PhD, Professor, Child Development and Neurology Unit, Dhaka Shishu (Children’s)
  Hospital, Sher-e-Bangla Nagar, Dhaka, Bangladesh. naila.z.khan@gmail.com
Brazil: Jose Salomao Schwartzman, MD, Professor, Developmental Disorders Postgraduation Program,
   Mackenzie Presbyterian University. São Paulo,Brazil josess@terra.com.br




                                                     v
DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD




Bulgaria: Aneta Popivanova, MD, Assistant Professor of Neonatology, University Clinic of Neonatology,
  University Hospital of Obstretics and Gynaecology, Sophia, apopivanova@abv.bg
Canada: Emmett Francoeur, MD, Director, Child Development Program and Developmental Behavioral
  Pediatric Services, Montreal Children’s Hospital, McGill University Health Center, Montreal Children’s
  Hospital, Montreal, Quebec, Canada. emmett.francoeur@mcgill.ca
Chile: Paula Bedregal, MD, MPH, PhD, Professor of Public Health, School of Medicine, Pontificia Univer-
  sidad Católica de Chile, Santiago, Chile, pbedrega@med.puc.cl
China: Jin Xing Ming, MD, Department of Development and Behavioral Pediatrics, Shanghai Children’s
  Medical Center, School of Medicine, Shanghai Jiaotong University, Shanghai 200127, China, zhujing7@
  public7.sta.net.cn
Egypt : Ala’a Ïbrahim Shukrallah MD, Head of Training and Research Unit, Development Support Centre,
  30 Haroun St, Geiza, Egypt, alaashuk@yahoo.com
France: Phillipe Compagnon, MD, Hôpital Sainte Thérèse, Bastogne, Belgium philippe.compagnon@
  wanadoo.fr
Gaza Strip and West Bank: Alam Jarrar, MD, Director, Rehabilitation Program, West Bank and Gaza, Ra-
  mallah, Palestine, allam@pmrs.ps
Georgia: Nana Tatishvili, MD, Medical director and head of neurology service, M.Iashvili Central Childrens
  Hospital, Tbilisi, Georgia. n_tatishvili@mail.ru
India: MKC Nair, MD, Professor of Pediatrics & Clinical Epidemiology Director, Child Development Centre
  Medical College, Thiruvananthapuram Kerala, India. nairmkc@rediffmail.com
Vibha Krishnamurthy, MD, Director, Ummeed Child Development Center, Mumbai, India. vibha.krish@
  gmail.com
Indonesia: Anna Alisjahbana, MD, PhD, Professor Emeritus, Founder and Chairperson Surya Kanti
  Foundation (YSK), “Center for the Development of Child Potentials” Consultant & Advisor, Bandung,
  Indonesia. alisja_a@melsa.net.id
Israel: Gary Diamond, MD, Director, Child Development Services, Clalit Health Maintenance Organization,
   Dan Region, Israel, and Vice Director Child Development Institute Schneider Childrens Medical Center
   of Israel, Petah Tikva, Israel. diamondg@zahav.net.il
Jordan: Saleh Al-Oraibi, PhD, MCSP, Assistant Professor, AL- Hashmite University , Faculty of Allied Health
   Sciences, Physical Therapy and Rehabilitation Department, Zarka, Jordan, so55@hu.edu.jo
Kyrgyzstan: Nurmuhamed Babadjan, Chief of pediatric rehabilitation department, National Center of
  Pediatrics. nurmuhamed-babad@mail.ru
Gulmira Nagimidinova, Director of IMCI Center of National Center of Pediatrics and Child Surgery,
  assistent of department of family medicine of Kyrgyz State Medical Academy, Bishkek, Krygyzstan.
  nt_gulmira@yahoo.com
Lebanon: Moussa Charafeddine, Vice President Inclusion International, Secretary General Lebanese
  Parents & Institutional Associations for Intellectually Disabled, President Of MENA Region Inclusion
  International, President, Friends of Disabled Association-Lebanon, Beirut, Lebonon. moussa@friends-
  fordisabled.org.lb
Malaysia: Amar Singh HSS, MD, Senior Consultant Paediatrician, Consultant Community Paediatrician
  Head of Paediatric Department, Ipoh Hospital, Perak, Malaysia. amimar@pc.jaring.my
Pakistan: Zeba A. Rasmussen, Vice Chairman, Chief Executive Officer, Mehnaz Fatima Educational and
  Welfare Organization, Shahrah-e-Quaid-e-Azam Near Family Health Hospital, Jutial , Gilgit, Pakistan.
  zebarasmussen@yahoo.com, zeba@comsats.net.pk
Phillipines: Alexis Reyes, MD, Professor, Institute of Child Health and Human Development, University of
  the Philippines, National Institutes of Health, Manila, Philippines. alexis7591@gmail.com
Romania: Adrian Toma, MD, Chief of the Neonatology Unit, “Panait Sarbu” Obstetrics and Gynecology
  Hospital, Bucharest, Romania. tomaotiadi@yahoo.com




                                                    vi
ACKNOWLEDGEMENTS




Russian Federation: Akaterina Klochkova, PhD, Head of physiotherapy department, St. Petersburg Pavlov
  Medical University, St Peterburg Early Intervention Institute, St Petersburg, Russian Federation. katya@
  klo.ioffe.ru
Saudi Arabia: Saleh M. Al Salehi Al Harbi, MD, Medical Director, Children’s Hospital, Consultant develop-
  mental behavioral pediatrics, King Fahad Medical City, Riyadh, Saudi Arabia, sssnm3@hotmail.com,
  salsalhi@kfmc.med.sa
Singapore: Rosebeth Marcou, MD, Developmental and Behavioural Paediatrician, Raffles Hospital, Singa-
   pore. drmarcou@gmail.com
South Africa: Colleen Adnams, MD, Senior Specialist and Lecturer Head, Developmental (Clinical) Service
  and Division of Paediatric Neurosciences, Red Cross War Memorial Children’s Hospital and School of
  Child and Adolescent Health, University of Cape Town, South Africa. Colleen.Adnams@uct.ac.za
Turkey: Drs Ilgi Ertem, Derya Gumus Dogan, Bahar Bingoler Pekcici, Ozlem Unal. Developmental-Behavioral
  Pediatrics Division, Department of Pediatrics, Ankara University School of Medicine, Ankara, Turkey.
  ertemilgi@yahoo.com
United Kingdom: Val Harpin, MD, Consultant Paediatrician (neurodisability), Ryegate Children’s Centre,
  Sheffield, United Kingdom, val.harpin@sch.nhs.uk
United Republic of Tanzania: Augustine Massawe, MD, Senior Lecturer, Consultant Paediatrician and
  neonatologist, Muhimbili National Hospital, Muhimbili University College of Health Sciences, Dar es
  Salaam,Tanzania. draugustine.massawe@gmail.com
United States of America: David J. Schonfeld, MD, Director, Division of Developmental and Behavioral
  Pediatrics Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States. david.
  schonfeld@cchmc.org
Viet Nam: Tran Thi Thu Ha, MD, Vice Director of the Rehabilitation Department, National Hospital of
   Pediatrics, Rehabilitation Director, Hope Center, Hanoi, Vietnam. mdthuha@yahoo.com

For further information about this document please contact Meena Cabral de Mello, Senior Scientist and
WHO Focal Person for Early Childhood Development in the Department of Child and Adolescent Health,
WHO/HQ, who led and managed this project.
   This document is a part of a series of evidence based reviews intended to guide interventions to improve
the health, growth and development of children, particularly those living in resource-poor settings. The
other reviews of relevance are:
●	   A critical link: Interventions for physical growth and psychological development. WHO/CHS/CAH/99.3 (1999).
●	   Family and community practices that promote child survival, growth and development: A review of the evidence.
     WHO. ISBN 92 4 159150 1 (2004).
●	   The importance of caregiver–child interactions for the survival and healthy development of young children. WHO.
     ISBN 924159134X (2004).
●	   Mental health and psychosocial well-being among children in severe food shortage situations. WHO/MSD/
     MER/06.1 (2006).
●	 Responsive  parenting: interventions and outcomes (2006). Bulletin of the World Health Organization,
     84:992–999.
●	   The role of the health sector in strengthening systems to support children’s healthy development in communities
     affected by HIV/AIDS: A review. WHO. ISBN 9241594624. (2006).
●	   Early child development: A powerful equalizer (2007). Final Report for the World Health Organization’s
     Commission on Social Determinants of Health. http://www.who.int/child_adolescent_health/documents/
     ecd_final_m30/en/
●	   The Lancet: Child development in developing countries series. The Lancet, Vol 369 January 6, 2007.
     http://www.who.int/child_adolescent_health/documents/lancet_child_development/en/index.html




                                                         vii
DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD




●	   The Lancet: Child Development 1. Inequality in early childhood: risk and protective factors for early child
     development. Lancet 2011; 378: 1325–38 http://www.thelancet.com/journals/lancet/article/PIIS0140-
     6736%2811%2960555-2/fulltext.
●	   The Lancet: Child Development 2: Strategies for reducing inequalities and improving developmental
     outcomes for young children in low-income and middle-income countries. Lancet 2011; 378: 1325–38.
     http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2811%2960889-1/fulltext
●	   Facts for life. UNICEF. Fourth edition (2010). ISBN: 9789280644661.

To obtain copies of the above documents and for further information, please contact:
	 Department of Maternal, Newborn, Child and Adolescent Health
	 World Health Organization
	 20 Avenue Appia
	 1211 Geneva 27
	Switzerland
	    Tel: +41 22 791 3281
	    Fax: +41 22 791 4853
	    Email: cah@who.int
	    Web site: http://www.who.int/child-adolescent-health




                                                       viii
1
                                                    Chapter

                 Introduction and overview



T     he majority of the world’s children live in low-
      and middle-income (LAMI) countries. Often,
in these countries, the health care system is the
only system that has the potential to reach most
young children and their families. For centuries,
clinicians, researchers and advocates around the
world have been working to prevent, diagnose
and treat childhood illness, so that children can
enjoy good health and reach adulthood. This
task continues to be a challenge. There is still
an unacceptable disparity between high-income
and LAMI countries with respect to indicators for
child survival and health. Equally unacceptable
is the disparity between countries in the range
                                                             The majority of world’s children live in low- and middle-
of supports available to help children develop               income countries, Nicaragua. © WHO-342031/C.Gaggero
optimally, and to prevent, detect and manage
developmental difficulties during infancy and
early childhood.                                             development, countries are categorized as high-
    Despite long experience in fighting childhood            income or low- and middle-income according to
illness and mortality, health care providers in              the World Bank definition (www.siteresources.
LAMI countries face new challenges in promot-                worldbank.org/DATASTATISTICS/.../CLASS.
ing child development. There is, nevertheless, a             XLS accessed 21.04.2011).
wealth of information on this topic, generated by                Developmental difficulties during early
researchers and clinicians working in resource-              child­ ood are increasingly recognized in LAMI
                                                                   h
poor conditions. The main premise of the present             countries as important contributors to morbidity
review lies in the words of the late Professor Mujdat        in children and adults. Health care systems in
Basaran, a renowned paediatrician in Turkey: “We             high-income countries provide multiple oppor-
must generate our own science. We must search                tunities for the prevention, early identification
and research for information that is pertinent for           and management of developmental difficulties
our own circumstances and we must contribute                 in young children. Interventions to improve the
to the production of the science that will help us           development of young children are becoming
move forward.” This review therefore compiles the            increasingly available in LAMI countries, and
wealth of information that has already accumu-               include low-cost strategies, such as addressing
lated in a systematic framework that can be used             malnutrition and iron deficiency, training car-
by health care providers in LAMI countries.                  egivers, increasing psychosocial stimulation and
    In this review, the term “developmental dif-             providing community-based rehabilitation.
ficulties” is used to refer to a range of difficulties           Infancy and early childhood are the best time
experienced by infants and young children,                   for the prevention and amelioration of problems
including developmental delay in the areas of                that could potentially cause developmental dif-
cognitive, language, social-emotional, behav-                ficulties and affect brain development across the
ioural and neuromotor development. “Early                    lifespan. A focus on prevention and early inter-
childhood” and “young children” relate to the                vention for developmental difficulties requires
age range 0 to 3 years. Since economic status is             an understanding of the magnitude and nature
the most important factor determining human                  of the problems, to ensure a match between the




                                                         1
DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD




       interventions delivered and what is needed by the          information on specific developmental risk fac-
       children, their families and their communities.            tors, such as human immunodeficiency virus
          Many families have contact with the health care         (HIV) infection and acquired immunodeficiency
       system most often – and sometimes only – when              syndrome (AIDS), low birth weight, malnutrition
       their children are young. Health care encounters           and chronic illness. This review should not be
       for young children are, therefore, important               viewed as a general resource for early childhood
       opportunities for clinicians in LAMI countries to          disability or for specific developmental disabili-
       have a positive influence on development.                  ties, such as cerebral palsy, genetic or metabolic
          In most LAMI countries, the health care sys-            disorders, autism spectrum disorders, and cogni-
       tem does not have a model for the promotion                tive or sensory impairments. These topics deserve
       and monitoring of the development of children,             specific attention beyond the scope of this review.
       prevention and early identification of risk factors        Where relevent and possible, reference is made
       associated with developmental difficulties, and            to other reviews or documents on these topics.
       early interventions. Health care providers may
       not have appropriate knowledge and expertise,
                                                                  Terminology
       and service delivery systems may be inadequate.
       However, by building local capacity, a systematic          During the first three years of life, even children
       approach, specific to the needs of LAMI countries,         who are showing typical development may be at
       can be developed. This review seeks to help health         risk and in need of early intervention services.
       care providers and systems in LAMI countries to            Children may show differences from the broad
       build such local capacity.                                 range of healthy development without necessar-
                                                                  ily having a specific disorder or disability. This
                                                                  review includes issues related to a broad spectrum
       Scope of the review                                        of problems that may affect development. There-
        WHO has previously published three reports                fore, the term “developmental difficulty” is used
        related to child development. The first, A critical       to include conditions that place a child at risk for
        link (WHO, 1999) summarized the importance                suboptimal development, or that cause a child to
        of addressing both the nutritional and psycho-            have a developmental deviance, delay, disorder
        social aspects of malnutrition and was a seminal          or disability. The term is intended to encompass
        report on the need for developmentally based              all children who have limitations in functioning
        biopsychosocial approaches to child health. The           and developing to their full potential, e.g. those
        second, The importance of caregiver–child interac-        living in hunger and social deprivation or born
        tions for the survival and healthy development of         with low birth weight, as well as those with cer-
        young children (Richter, 2004) contained impor-           ebral palsy, autism, cognitive imparments such
        tant information on the most critical component           as Down syndrome, sensory problems, or other
                                  of child development,           physical disabilities, such as spina bifida.
                                  the relational aspect.              There is no universally accepted definition of
                                  The third, Early child-         developmental pathology during infancy and early
     During the first
                                  hood development: a pow-        childhood (Msall, 2006). “Developmental delay”
 three years of life, even
                                  erful equalizer (Irwin,         is often defined as a deviation of development
children who are showing
                                  Siddiqi & Hertzman,             from the normative milestones in the areas of
typical development may
                                  2007), prepared for the         cognitive, language, social, emotional and motor
  be at risk and in need
                                  WHO Commission on               functioning. Neurodevelopmental disorders have
  of early intervention
                                  the Social Determinants         been categorized as cerebral palsy, autism, genetic
          services.
                                  of Health, provided an          syndromes and metabolic diseases affecting the
                                  in-depth look at the            central nervous system (Batshaw, 2002). Often
                                  importance of social            infants and young children with any kind of dif-
        determinants in shaping child development                 ficulty require a broad range of services, referred
            This fourth report includes information               to as early intervention. While some disabilities
        from low- and middle-income countries on the              merit specified services, there are widely rel-
        conceptualization, epidemiology, prevention,              evant common approaches that can be delivered
        detection, assessment and early management of             through health systems for the prevention, early
        the broad spectrum of developmental risk factors          detection and management of developmental dif-
        and developmental difficulties in children aged           ficulties. An in-depth knowledge of the function-
        3 years and under. It does not contain in-depth           ing and needs of the child, family and community




                                                              2
CHAPTER 1. INTRODUCTION AND OVERVIEW




is often more important than the category of the                     The following WHO projects also informed the
pathology. For this reason, this review adopts                     construction of the DDEC Survey:
a non-categorical approach, as recommended
                                                                   ●	 Atlas:  Country Resources for Neurological
by pioneers in the fields of early intervention
                                                                      Disorders (WHO 2004b)
and children with special needs (Msall et al.,
                                                                   ●	 Mental Health Atlas, (WHO 2005a)
1994; Msall, 2006; Stein & Silver, 1999; Stein,
                                                                   ●	 WHO AIMS: Mental Health Systems in low-
2004). This non-categorical approach parallels
                                                                      and middle-income countries: a WHO-AIMS
that of the WHO International Classification of
                                                                      cross-national analysis (WHO 2005b)
Functioning, Disability and Health for Children
                                                                   ●	 Atlas: Child and adolescent mental health
and Youth (ICF-CY) framework (WHO, 2007),
                                                                      resources: Global concerns, implications for
which is explained in detail in Chapter 8 (Lollar
                                                                      the future (WHO 2005c)
& Simeonsson, 2005; Simeonsson, 2007).
                                                                   ●	 Atlas: Epilepsy care in the world (WHO 2005d)
                                                                   ●	 Atlas: Global resources for persons with intel-
The WHO Developmental Difficulties                                    lectual disabilities (WHO 2007b).
in Early Childhood Survey
                                                                   A broad literature search was conducted to iden-
There is little information available about how                    tify key publications that examined similar con-
health care systems are functioning with regard                    structs. A study conducted by the International
to the prevention, early detection and early man-                  Society of Prevention of Child Abuse and Neglect
agement of developmental difficulties. The Devel-                  (ISPCAN, 2008) and another of structures and
opmental Difficulties in Early Childhood (DDEC)                    practices of well-child care in ten high-income
Survey was therefore developed to identify the                     countries (Kuo et al., 2006) provided useful input
structures and practices in different countries.                   to the DDEC.
Sample results from this survey are provided in                        The reliability of the questions was checked
summary form at the beginning of the relevant                      by giving the survey to two expert respondents
chapters in this review. The detailed results will                 in each of four countries. When major disaggre-
be presented elsewhere.                                            ments were found, questions were removed; for
                                                                   minor disagreements, questions were reworded.
Construction of the survey
                                                                   Identification of respondents
A number of key questions were identified and
discussed with a group of experts within the                       The networks of WHO, UNICEF, the Society for
WHO Departments of Child and Adolescent                            Developmental Behavioral Pediatrics, the Inter-
Health and Development, Mental Health, and                         national Society for Early Intervention and Zero
Nutrition, and the Disability and Rehabilitation                   to Three were contacted to identify key experts
Team. In addition, a number of internationally                     around the world who met all of the following
renowned experts in the fields of early childhood                  three criteria.
development, developmental difficulties and early                  1. The person was the key expert (or one of the
intervention provided input to and comments                           key experts) in the country on early identifica-
on the content and structure of the survey (see                       tion, early intervention and rehabilitation of
Acknowledgements).                                                    young children aged 0–3 with developmental
                                                                      risks (such as low birth weight or malnutrition)
                                                                      and difficulties (such as developmental delay,
                                                                      cerebral palsy, Down syndrome).
                                                                   2. The person had in-depth knowledge about the
                                                                      health care system and the training of primary
                                                                      child health care providers in the country. Pref-
                                                                      erence was given to academic paediatricians
                                                                      responsible for training health care providers.
                                                                   3. The person had good command of English.
                                                                   A literature search was also conducted to identify
                                                                   professionals who had published on the concepts
Social interactions begin early in life: 3-month old, Niger.
© UNICEF/NYHQ2009-2569/Holtz
                                                                   in the DDEC Survey. When an expert was identi-




                                                               3
DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD




                                                                of the early years and the role of the health care
                                                                system in ensuring the optimal development of all
                                                                children. The term “child development” indicates
                                                                the advancement of the child to reach his or her
                                                                optimal potential in all areas of human function-
                                                                ing – social, emotional, cognitive, communication
                                                                and movement. In the past few decades, new
                                                                imaging techniques have enabled us to visualize
                                                                how the human brain develops. This chapter sum-
                                                                marizes comtemporary theory on early childhood
                                                                development and provides a framework for why
                                                                this concept deserves to be addressed in detail
                                                                within health systems around the world.
Early stimulation is crucial to optimal development: one-
year old with Down syndrome, Turkey. Photo: Canan Gul Gok
                                                                    Chapter 3 provides a framework for under-
                                                                standing the epidemiology of developmental
                                                                difficulties in young children by reviewing the
fied, at least one of the networks was contacted                existing evidence.
to confirm that he or she was suitable to be the                    Chapter 4 introduces a conceptual framework,
respondent for the country. In total, experts from              the “Life cycle approach to developmental risk
35 countries were identified and invited to par-                factors”, which organizes the risk factors and pro-
ticipate in the Web-based survey.                               tective factors for child development in a way that
   Respondents from 31 countries completed                      helps countries and communities determine what
the survey, comprising 94% of those identified                  needs to be done. Research in LAMI countries on
and eligible. Of these, 6 were from low-income                  preconceptional developmental risk factors that
countries, 17 from middle-income countries and                  have not previously been fully explored, such
8 from high-income countries. Despite the small                 as adolescent parenting, unintended pregnancy,
number of countries included, the total popula-                 inadequate birth interval and consanguinity, are
tion of the countries in the survey is approxi-                 also reviewed.
mately 70% of the world population.                                 Chapter 5 provides a new conceptual frame-
                                                                work of interventions that can be delivered within
                                                                the health care system for the prevention of devel-
Limitations of the survey                                       opmental difficulties in young children. Examples
There are two main limitations of the DDEC                      of research on prevention in LAMI countries are
survey – generalizability and reliability. Its gen-             given, and an exemplary programme, the WHO/
eralizability is limited by the fact that countries             UNICEF Care for Child Development Interven-
that were included comprise a portion of the world              tion, is summarized.
population. Countries particularly in Africa may                    Chapter 6 deals with early recognition of
not be well represented in this survey. Further-                developmental difficulties in young children.
more, since this survey represents information                  Early recognition allows both preventive and
provided by one expert opinion from each coun-                  therapeutic approaches to be implemented and
try, the question of reliability and generalizability           is a crucial step in addressing the problems. In
of the responses remains a limitation. Respond-                 high-income countries, the integration of devel-
ents were knowledgeable, were asked to report                   opmental monitoring into health care encounters
about their country as a whole, and to use data                 has been recognized as an important strategy
and other expert opinions to respond to the ques-               for the early detection of developmental dif-
tions when possible. However, their views may                   ficulties. This chapter promotes developmental
not reflect the situation in all parts of the country.          monitoring in LAMI countries, summarizing
                                                                its conceptualization and addressing key ques-
                                                                tions of importance for LAMI countries. A novel
Outline of chapters
                                                                method of developmental monitoring, which is
The body of this review comprises nine chapters.                currently being used in Turkey and which has
At the beginning of the first eight chapters, the               been specifically developed by the author with
relevant results from the DDEC Survey are given.                attention to the needs of health care providers in
   Chapter 2 provides a summary of the concep-                  LAMI countries, is also introduced. This method
tualization of child development, the importance                is fully complementary with the WHO/UNICEF




                                                            4
CHAPTER 1. INTRODUCTION AND OVERVIEW




Care for Child Development Intervention. When
used together, these two methods may provide a
                                                                         “…in the context of the successes of
systematic, family-centred and strengths-based
                                                              current primary health care child survival initiatives,
approach to monitoring the development of young
                                                               it is essential in low-income countries that increased
children, to prevent the most common cause of
                                                                     emphasis be placed on prevention and early
developmental delay (understimulation), to detect
                                                                 identification of developmental disabilities within
developmental difficulties and to provide early
                                                                   the primary and maternal and child health care
intervention.
                                                              systems. Those systems must in turn be linked to and
    Chapter 7 focuses on the developmental
                                                                         supported by secondary and tertiary
assessment of young children, to establish a
                                                                                   medical services.”
diagnosis, ascertain their level of functioning,
determine their needs for additional support and                       Committee on Nervous System Disorders
services, and enable them to reach such services.                         in Developing Countries, 2001
In many resource-rich countries, a team of clini-
cians from multiple disciplines evaluate the child
and the family. In countries with fewer resources,
the evaluation of the child may be conducted by           and Youth (WHO, 2007), and provides examples
one or two clinicians with a less broad experience.       of how this system can be applied to capture the
The basic principles of developmental assess-             functioning and needs of young children. It also
ment, however, can be applied by an experienced           provides a summary of the framework developed
clinician in any setting, to give a comprehensive         by Zero to Three (2005).
assessment leading to appropriate interventions.             Chapter 9 provides a summary of early inter-
This chapter, therefore, provides information on          ventions to guide health care providers and health
the basic principles of developmental evaluation,         care policy-makers in LAMI countries in their
the types of developmental assessment that are            efforts to improve the lives of developmentally
desirable and how to begin building an infrastruc-        vulnerable children and their families.
ture for such assessments.                                   Chapter 10 presents the key actions suggested
    Chapter 8 summarizes information on clas-             by the respondents to the DDEC Survey. These
sification systems for developmental difficulties         have been compiled under headings that emerged
in young children that can be used in LAMI                from a qualitative analysis of the open-ended
countries. Internationally endorsed classifica-           questions in the survey, i.e. (a) advancing policy
tions facilitate the gathering, conceptualiza-            related to developmental difficulties in early child-
tion, interpretation and sharing of information           hood at national level; (b) breaking down barri-
between clinicians and researchers around the             ers using common international approaches and
world. Countries may also use classifications to          platforms; (c) increasing local capacity by train-
determine whether children are eligible for certain       ing personnel; (d) increasing capacity in other
services. This chapter places specific emphasis           specialities related to developmental difficulties;
on the WHO International Classification of                (e) empowering caregivers; and (f) conducting
Functioning, Disability and Health for Children           research.




                                                      5
2
                                                 Chapter

    Early childhood development and
           health care systems

                                                        Purpose of chapter and additional
DDEC Survey results                                     key references

                                                        T
A number of questions in the DDEC                             he recent Lancet series, “Early childhood
Survey requested information on the                           development in developing countries”,
infrastructure and role of the health services          estimated that over 200 million children in
in addressing developmental difficulties in             developing countries are not reaching their full
young children. In most countries, access               developmental potential (Grantham-McGregor et
to health care providers was not an issue.              al., 2007). The Disease Control Priorities project
Trained health care providers were either               has stated that 10–20% of individuals have learn-
within walking distance or accessible by                ing or developmental difficulties (Durkin et al.,
transportation that was affordable to most              2006). Developmental difficulties are the most
of the population. Continuity of health care,           common causes of long-term morbidity (Com-
however, was a problem. Child development               mittee on Nervous System Disorders in Develop-
can best be addressed if the same health                ing Countries, 2001). This chapter summarizes
care provider follows the child over time.              the conceptualization of child development, the
In most countries, however, children did                importance of the early years of life and the role
not receive primary preventive health                   of the health care system in ensuring optimal
care, or care for acute or chronic illness,             development of all children.
continuously from the same providers. In                    In-depth information on the theoretical con-
most low-income countries, but not high-                ceptualization of child development is beyond the
and middle-income countries, home-visiting              scope of this review. Readers are referred to other
was available for the majority of children.             key documents that contain detailed information
In all LAMI countries, there was a shortage             on contemporary developmental theories and
of primary health care personnel. General               interventions during infancy and early childhood
paediatricians, paediatric subspecialists,              (Shonkoff & Phillips, 2000; Shonkoff & Meisels,
and professionals trained to deal with                  2003; Guralnick, 2005a; Myers, 1995; Zeanah,
children with special needs were also few               2000; National Scientific Council on the Develop-
in number. Although some preservice or                  ing Child, 2007).
in-service training programmes existed,                     The Institute of Medicine has published a
primary health care providers did not                   book specifically intended to guide health care
generally have the expertise to deal with               systems, which reviewed in detail the potential
developmental difficulties.                             response of such systems to developmental disor-
                                                        ders (Committee on Nervous System Disorders in
                                                        Developing Countries, 2001). Durkin et al. (2006)
                                                        reviewed the disease burden of learning and
                                                        developmental difficulties and ways to address
                                                        these problems.
                                                            A number of recent Lancet series – on neonatal
                                                        survival (Darmstadt et al., 2005; Knippenberg et
                                                        al., 2005; Martines et al., 2005, Lawn, Cousens &
                                                        Zupan, 2005), child development in developing
                                                        countries (Engle et al, 2007; Grantham-McGregor
                                                        et al., 2007; Walker et al., 2007,), maternal and
                                                        child undernutrition (Black et al., 2008), global



                                                    6
CHAPTER 2. EARLY CHILDHOOD DEVELOPMENT AND HEALTH CARE SYSTEMS




mental health (Barret, 2007; Bhugra & Minas,                cal link (WHO, 1999) documented the critical
2007; Chisholm et al., 2007; Dhanda, 2007; Her-             relationship between the nutritional status of a
rman & Swartz, 2007; Horton, 2007; Jacob et                 child and his or her psychological development,
al., 2007; Patel et al., 2007; Prince et al., 2007;         and demonstrated the effectiveness of combin-
Saraceno et al., 2007; Sartorius, 2007; Saxena et           ing interventions to promote early childhood
al., 2007) and disability (Groce & Trani, 2009;             development with efforts to improve child health
Gottlieb et al., 2009; Trani, 2009) – contain infor-        and nutrition, in an integrated care model. The
mation on addressing developmental difficulties             report highlighted the importance of addressing
in young children within health care systems.               both the nutritional and psychosocial aspects of
    There are many international resources related          malnutrition and was a seminal report on the
to children with developmental difficulties. The            need for developmentally based biopsychosocial
United Nations (UN) has two conventions related             approaches to child health. The second publica-
to children with developmental difficulties:                tion, The importance of caregiver–child interactions
the UN Convention on the Rights of the Child                for the survival and healthy development of young
(United Nations, 1989), and the UN Convention               children (Richter, 2004) contained important
on the Rights of Persons with Disabilities (United          information on the most critical component of
Nations, 2006). Both affirm that children have the          child development, the relational aspect. The
right to develop to their full potential and that           third, Early childhood development: a powerful equal-
countries should guarantee that children with               izer (Irwin, Siddiqi & Hertzman, 2007), prepared
special needs receive the services they require.            for the WHO Commission on the Social Deter-
The second convention promotes and protects                 minants of Health, provided an in-depth look at
the full and equal enjoyment of all human rights            the importance of social determinants in shaping
and fundamental freedoms by people with dis-                child development. This report highlighted the
abilities, and is legally binding for all Member            need for sustained research activities to under-
States. Article 25 of the Convention requires               stand the effects of the environment on biological
Member States to ensure access for persons with             endowment and early childhood development,
disabilities to health services that are gender-            and for available evidence to inform actions to
sensitive, including health-related rehabilitation.         further child development social investment
However, the Convention does not explicitly                 strategies at all levels
define disability. The UN Standard Rules for the
Equalization of Opportunities for Persons with Dis-
                                                            Conceptualization of
abilities, which was recognized by the UN General
                                                            child development
Assembly in 1993 (United Nations, 1993), is used
for monitoring progress in addressing disability            The term “child development” indicates advance-
in countries. Importantly, this report addresses            ment of the child in all areas of human functioning:
the basic preconditions that need to be in place            social and emotional, cognitive, communication
to improve the quality of life of children with             and movement. A long-standing debate in child
developmental difficulties.                                 development theory relates to the relative influ-
    WHO has previously published three reports              ence of nature versus nurture. If nature is assumed
related to child development. The first, A criti-           to be predominant, child development follows
                                                            a genetically programmed progression, influ-
                                                            enced by biomedical risks. On the other hand,
                                                            if nurture is considered more important, then
                                                            the child’s development is primarily influenced
                                                            by the caregiving environment – proximally by
                                                            the primary caregivers and more distally by the
                                                            larger community.
                                                               The contemporary theoretical conceptual-
                                                            ization of child development incorporates the
                                                            importance of both nature and nurture, parallels
                                                            the biopsychosocial model of health (Engel 1977),
                                                            and builds on Bronfenbrenner’s bioecological
                                                            model (Bronfenbrenner & Ceci, 1994). This model
The health system has a key role in monitoring and
promoting child development: Developmental Pediatrics
                                                            postulates that human development takes place
Division, Turkey. Photo: Dr. Ilgi Ertem                     through progressively more complex interactions




                                                        7
DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD




Figure 1. Conceptualization of child                                                                        child, through the living and working conditions
          development (reproduced from                                                                      of the caregivers, the educational, social and
          Ertem, 2011)                                                                                      health services, and the physical environment. For
                                                                                                            example, the child may be affected by the mother
                                           D IS T
                                                  AL ENVIRONMENT                                            or father being stressed because the workplace
                                                   Co m m u ni ty
                                                  oeconomic milieu
                                                                                                            is not accommodating their needs and desires
                                           S oc i
                                                                                                            as new parents. Bioecological theory holds that
                                                                        •
                          •
                                                    E N V IR O N
                                                                            H
                                                                                e                           all components – the biological, psychological,
                      t                      IM AL               M
                                          OX         er s , f a m ENT
                                       P R a re g iv                                                        and social functioning of the child and his or


                                                                                al
                en




                                                                 il y




                                                                                    th
                                           C
              m




                                                                                                            her dynamic interactions with the proximal and
            on




                                                                                     Se
                                                                                         rv
      vir




                                                                                                            distal environments – must be addressed when

                                                                                          ice
    en




                                                   Child
                                                                                                            supporting and monitoring child development

                                                                                            s •
 Physical




                                                                                                            in primary care. Bronfenbrenner’s bioecological
                                                                                               rvices       perspective offers a useful lens for understanding
                                                                                                            and supporting young children and their fami-
   • Li




                                                                                          l Se


                                      Mother                 Father
                                                                                                            lies. This conceptualization can be used in both
        vin




                                                                                         cia




                                                                                                            individual clinical work and in developing model
            g




                                                                                     So
            an




                                                                                                            programmes. Bronfenbrenner himself has stressed
                                                                                    •
                d




                    o
                  w




                                                                                n




                        rk                                                ti                                the importance of recognizing and accepting
                                                                            o




                             in
                                  g                                    en
                                                                    rv       n
                                      co
                                           nd                 in te     t io                                the uniqueness and strength within each family
                                              ition
                                                    s • Early        ca
                                                                  du                                        system and in crafting empowering relations with
                                                             • E
                                                                                                            families (Swick & Williams, 2006).
                                                                                                               A more detailed explanation of how distal
                                                                                                            environments influence child development can
                                                                                                            be found in the Total Environmental Assessment
between a “biopsychosocial” human being and the                                                             Model of Early Childhood Development (TEAM-
persons, objects, symbols and systems in his or                                                             ECD) framework developed for the WHO Com-
her proximal and distal environment. This inter-                                                            mission on Social Determinants of Health (Irwin,
action is dynamic and the child plays an active                                                             Siddiqi & Hertzman, 2007). In the TEAM-ECD
role from birth onwards. Figure 1 offers a practical                                                        framework, there are “spheres of influence” on
schema for this theory (Ertem, 2011). Here, the                                                             early childhood development. These spheres are:
biological and genetic endowment of the child is                                                            (1) the individual child, (2) the family and dwell-
represented by the circle labelled “child”. Within                                                          ing, (3) residential and relational communities,
this endowment are included concepts such                                                                   (4) national, regional and global environments
as physical health, temperament, personality,                                                               (including global health status, ecological, eco-
developmental abilities, strengths, coping skills                                                           nomic, political and social environments), and (5)
and vulnerabilities. The two other circles, labelled                                                        early childhood programmes and services. In each
“mother” and “father”, represent the equivalent                                                             sphere of influence, social, economic, cultural and
characteristics of each member of the child’s                                                               gender factors affect the quality of the proximal
proximal caregiving environment – often the                                                                 caregiving environment, which is instrumental for
parents, but also other key caregivers and siblings.                                                        healthy development in early childhood.
The arrows between the different members signify
relationships and interactions between them. The
intersecting arrows symbolize how relationships                                                             The importance of the early years
between one pair shape and influence others in                                                              The importance of the early years in human devel-
the system. The proximal environment includes                                                               opment is neither a new nor a Western concept;
the child’s relationship with the primary caregiv-                                                          nor is it, in fact, a concept that is foreign to medical
ers and everyday interactions, such as feeding,                                                             sciences. The works of Avicenna (980–1037), a
comforting, playing and talking. This environ-                                                              Persian physician who is considered the father of
ment is nested in a community of extended fam-                                                              modern medicine, and Darwin (1809–1882) the
ily, neighbours and friends, and a socioeconomic                                                            founder of the theory of evolution, demonstrate
milieu, which includes the workforce, the wealth                                                            that the concept of early childhood development
and well-being of the country, and the health of                                                            has occupied the minds of physicians, philoso-
the population. This distal environment directly                                                            phers, scientists and caregivers for hundreds of
or indirectly influences the development of the                                                             years. According to Avicenna, the early years




                                                                                                        8
CHAPTER 2. EARLY CHILDHOOD DEVELOPMENT AND HEALTH CARE SYSTEMS




are the most important stage in the life of an              This construct can help clinicians, who are in
individual: “the infant is exposed to problems              fact a component of the holding environment for
and difficulties soon after birth and in the early          the mother. Approaches that foster the mother’s
stages of childhood and these influence his psy-            sense of competence and that empower her will
chology and temperament, and hence his moral                be effective; approaches that criticize her or make
and ethical development” http://www.ibe.unesco.             her feel inadequate will be counterproductive.
org/publications/ThinkersPdf/avicenne.pdf                   A relationship-based, supportive, non-critical,
accessed 12.07.2007).                                       non-didactic approach to parents is the hallmark
    Darwin, on the other hand, kept detailed                of many successful interventions.
records of the development of his son, providing               In the past few decades, new imaging tech-
one of the first systematic studies of child develop-       niques have provided further information on
ment (Darwin, 1877). A large body of scientific             the development of the human brain. Dynamic
research has been conducted since these early               brain-imaging technology has demonstrated
attempts to understand, study and explain child             that the full complement of neurons is formed
development.                                                before the third trimes-
   In addition to the bioecological model, two              ter of pregnancy, but
other theoretical concepts – attachment theory              that the connections or
                                                                                                   Dynamic brain-
and the concept of “the motherhood constellation”           synapses between these
                                                                                                 imaging technology
– provide guidance on how clinicians can support            neurons largely develop
                                                                                               has demonstrated that
child development. Attachment theory, developed             after birth. This synap-
                                                                                               the full complement of
by Bowlby (1978), suggests that a stable, respon-           togenesis, and the later
                                                                                             neurons is formed before
sive, nurturing primary relationship enables the            “pruning” processes that
                                                                                                the third trimester of
child to regulate his or her emotions and develop           occur in the developing
                                                                                               pregnancy, but that the
a secure base from which to explore, learn and              brain, are constructed
                                                                                              connections or synapses
form relationships with others. Attachment theory           to a large degree in the
                                                                                               between these neurons
implies that interventions in primary care should           early years within the
                                                                                                largely develop after
address the “caregiver–child” dyad and support              caregiving environment.
                                                                                                         birth.
parents in helping their infants develop secure             The quality of the every-
attachment. Research in developmental psychol-              day actions of the par-
ogy and child psychiatry has shown that a secure            ents – smiling, talking,
attachment to a primary caregiver is associated             cuddling, singing, and responding to the infant
with healthy emotional and cognitive functioning            – shapes the circuitry of the developing brain
in later life (Boris et al., 2000). Recent research         (Shore, 1997; Hannon, 2003).
on children raised in orphanages supports the                  It has also been established that stressors
importance of early relationships and stimulat-             during the early years affect brain architecture.
ing environments during the early years of life,            Shonkoff (2006) defines toxic stress as “strong,
showing that the cognitive outcome of abandoned             frequent, and/or prolonged activation of the body’s
children brought up in institutions was mark-               stress-management systems in the absence of
edly below that of abandoned children placed in             the buffering protection of adult support”. Pre-
institutions but then moved to foster care (Nelson          cipitants of toxic stress include extreme poverty,
et al., 2007).                                              recurrent physical or emotional abuse, chronic
   “The motherhood constellation” is a theoretical          neglect, severe maternal depression, parental sub-
construct developed by Stern (1998), a pioneer              stance abuse and family violence. An important
in infant development and mental health. He                 consequence of toxic stress is disruption of the
refers to the birth of a child and the early years          brain architecture, leading to stress-management
as a specific era of emotional development for              systems that respond at relatively low thresholds.
the mother. The pregnancy and the birth of the              These low thresholds persist throughout life,
baby change her mental organization, so that                increasing the risk of stress-related physical and
her primary preoccupations become keeping the               mental illness throughout childhood and the adult
infant alive and protected, caring for the baby so          years (Shonkoff, 2006).
that he or she will become “her” baby and not
just any baby (enabling attachment), and creating
                                                            The role of the health care system
a supportive, psychologically “holding” environ-
ment that supports her mothering. Stern calls               Many LAMI countries already have the infra-
this construct “the motherhood constellation”.              structure needed to support child development




                                                        9
DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD




within the health care system. For example, India
has the world’s largest integrated early childhood
development services; operational since 1975,
functioning in thousands of centres and covering
millions of children and mothers, these services
aim to improve the health and development of
children and families. In 2004, there were 5652
ICDS projects in India, 4533 in rural areas, 759
in tribal areas and 360 in urban areas (Ministry
of Women and Child Development, 2009). In
Turkey, local health care facilities are located at
village level throughout the country, staffed with
physicians, nurses and home-visiting midwives.
Thus, the health care system in many countries
can have a crucial role in promoting child devel-
opment and in the prevention, early detection
and management of developmental difficulties.
   The rationale behind this crucial role can be
summarized in four key points, as noted below.
1.	 In any country, the health care system is often
    the only system that can potentially reach all
    young children and their families.
2.	The biopsychosocial model of child develop-                The health system in most countries is the only system
   ment recognizes that much, if not all, human               that has potential to reach all families. © PAHO/WHO 319032
   disease and disability are a function of the
   interaction between genes and the environ-
                                                              4.	 As a result of research showing the positive out-
   ment. Physical health and development, though
                                                                  comes of early intervention, there has been par-
   often viewed as separate components of child
                                                                  ticular emphasis in many developed countries
   well-being, are in fact inseparable. The factors
                                                                  on the early identification and management of
   that cause poor health, e.g. undernutrition, also
                                                                  developmental difficulties within health sys-
   affect development. Similarly, factors that cause
                                                                  tems. In most LAMI countries, the personnel
   poor development, e.g. an unresponsive caring
                                                                  and infrastructure for early intervention may
   environment, also affect health. WHO refers to
                                                                  not appear to be universally accessible. How-
   this as the “critical link” between physical health
                                                                  ever, most early intervention programmes for
   and psychosocial development (WHO, 1999).
                                                                  young children with developmental difficulties
   Any system intended to address one component,
                                                                  do not require extensive staffing, and work best
   therefore, must be equipped to address both.
                                                                  when administered through caregivers. The
   Often, this system is the health system.
                                                                  training of caregivers in early intervention is
3.	Caregivers, families and communities gener-                    feasible in LAMI countries. As the availability
   ally have trust in, and contact with, the health               of early intervention and community-based
   care system (Durkin et al, 2006; Committee                     rehabilitation increases, the need for the early
   on Nervous System Disorders in Developing                      detection of problems through the health care
   Countries, 2001; Engle et al., 2007). This con-                system is becoming more evident.
   tact is most frequent when the child is young,
   for example for immunizations and growth
   monitoring, as well as for acute and chronic               Summary of research
   illnesses. Such health care encounters are
                                                              Research in high-income populations has shown
   excellent opportunities to strengthen families’
                                                              that promotion of development in paediatric
   efforts to promote their child’s development,
                                                              health care encounters has many potential
   and may be the only chance available for pro-
                                                              benefits for children and families. For decades,
   fessionals in developing countries to positively
                                                              high-income countries have included within the
   influence carers of young children and to pre-
                                                              health care system efforts to promote child devel-
   vent developmental difficulties.
                                                              opment. These countries have also mainstreamed




                                                         10
CHAPTER 2. EARLY CHILDHOOD DEVELOPMENT AND HEALTH CARE SYSTEMS




the early detection of developmental difficulties          one of the features of the health system that make
and links to early intervention services. This             it so important in addressing child development
placing of health care delivery in a developmental         issues in LAMI countries.
context has benefits for both physical health and              There are, however, many potential barriers
development. This is especially attractive where           in the primary health care system that can make
developmental approaches are added to existing             this task difficult. Continuity of care – receiving
structures in routine primary care. There are              health care from the same provider over a period
many examples in high-income countries of how              of time – is one of the most important principles
a developmental approach has been incorporated             and is crucial to the delivery of developmentally
into primary care for young children (Regalado &           appropriate health care. In the continuity-of-
Halfon, 2001). These include Sure Start in Eng-            care model, each child (and sometimes family)
land (Roberts & Hall, 2000), the European Early            is followed over time by the same health care
Promotion Project which has taken place in eight           provider. Studies in the United States during the
countries (Roberts et al, 2002), Help me Grow              1970s showed the beneficial effects of receiving
(Dworkin, 2006), Bright Futures (Green, 1994;              continuous health care from the same provider
Hagan, Shaw & Duncan, 2008; Knight, Frazer                 (Alpert et al., 1976; Gordis & Markowitz, 1971;
& Emans, 2001), Healthy Steps (Niederman et                Starfield et al., 1976). The benefits of continuous
al., 2007; McLearn et al., 2004; Minkovitz et al.,         primary care over episodic care included: fewer
2001; Zuckerman et al., 1997), Reach Out and               hospitalizations, operations, visits for illness,
Read (Needleman et al.,1991), and Touchpoints              and breaking of appointments; more health
in the United States (Brazelton, 1999; Hornstein,          supervision visits, use of preventive services, and
O’Brien & Stadtler, 1997). In addition, research           patient satisfaction; and
has focused on the early detection and manage-             lower costs (Alpert et al.,
ment of developmental difficulties (Council on             1976). Since the 1980s,
                                                                                                Primary health care
Children with Disabilities, 2006).                         developed countr ies
                                                                                               providers are in a key
    Child mortality and morbidity patterns in              have tried to ensure that
                                                                                                position to address
LAMI countries are changing dramtically. In                each child has a continu-
                                                                                               child development in
most countries, childhood mortality has declined           ous primary health care
                                                                                               developing countries.
considerably in the past 20 years. The major               provider. More research
                                                                                              Often they are the only
causes of death have also changed. For example,            is needed on the effects
                                                                                               service providers who
in Bangladesh, chronic diseases and injuries               of continuity of care in
                                                                                             reach young children and
have overtaken infectious diseases as the lead-            LAMI countries and the
                                                                                              their families, and they
ing causes of child death (Rahman et al., 2004c).          changes to the system
                                                                                              are generally trusted in
Further research is needed in LAMI countries               that would be needed to
                                                                                                their communities.
to understand these changes and improve the                ensure such continuity.
planning of appropriate policies to address the                The quality of the
new challenges.                                            support given by the
                                                           health care provider will depend on his or her
                                                           training and experience in child development
The role of primary health care
                                                           concepts. The DDEC Survey indicated that health
Primary health care providers are in a key position        care providers, particularly in the LAMI coun-
to address child development in developing coun-           tries, generally do not have adequate training
tries. Often they are the only service providers           and experience in the prevention, early detection
who reach young children and their families, and           and management of developmental difficulties in
they are generally trusted in their communities.           young children. The limited research from LAMI
In addition, their background enables them to              countries also indicates that primary health care
identify and take action against the biological and        clinicians require training in counselling car-
psychosocial causes of developmental difficulties.         egivers on child development and detecting and
   The DDEC Survey found that, in most of the              managing related difficulties (Powell et al., 2004;
countries, health centres were readily accessible          Rahman et al., 2004a, 2008; Turmusani, Vreede
to the majority of the population. Home-visiting           & Wirz, 2002; Walker et al., 2005; WHO, 1999,
by health providers – an important vehicle for             2001a, 2006). WHO and UNICEF have developed
integrating child development concepts into                a number of resources to help train clinicians in
health care delivery – was also routinely practised        LAMI countries to address child development.
in many of the LAMI countries. Accessibility is            Community-based rehabilitation (CBR) interven-




                                                      11
DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD




       tions promoted by WHO for the past 20 years,                information, since each focuses on only one aspect
       for example, are becoming available for young               of child development training and examines the
       children in developing countries (Beard, 2007;              efficacy of training under controlled research
       Lozoff, Jimenez & Smith, 2006; Richter, 2004).              conditions. More research and information are
       WHO/UNICEF training modules on “Care for                    needed from developing countries on the effec-
       child development intervention” (see Chapter 5 for          tiveness and sustainability of comprehensive
       more information) have been available as a com-             models for addressing child development within
       ponent of Integrated Management of Childhood                health care systems.
       Illness (IMCI) (WHO, 2001a) and currently as an
       intervention that can be integrated into processes
                                                                   Developmental–behavioural paediatrics
                                                                   As a guide to progress in the area of develop-
          “…in the context of the successes of
                                                                   mental disorders, the US Institute of Medicine
       current primary health care child survival
                                                                   released a report in 2001 (Committee on Nerv-
initiatives, it is essential in low-income countries that
                                                                   ous System Disorders in Developing Countries,
increased emphasis be placed on prevention and early
                                                                   2001), which recommended that “in the context
identification of developmental disabilities within the
                                                                   of the successes of current primary health care
         primary and maternal and child health
                                                                   child survival initiatives, it is essential in low-
care systems. Those systems must in turn be linked to
                                                                   income countries that increased emphasis be
        and supported by secondary and tertiary
                                                                   placed on prevention and early identification of
                     medical services.”
                                                                   developmental disabilities within the primary and
                                                                   maternal and child health care systems. Those
         Committee on Nervous System Disorders                     systems must in turn be linked to and supported
            in Developing Countries, 2001                          by secondary and tertiary medical services.” All
                                                                   levels of services should also be linked to dis-
                                                                   ciplines that can create the knowledge base for
       other than IMCI (WHO, 2001c). WHO has also                  the incorporation of child development concepts
       incorporated child development messages in the              within health systems. Developmental–behav-
       training materials for the newly launched WHO               ioural paediatrics has for decades pioneered the
       growth standards (Borghi et al., 2006; de Onis et           introduction of concepts of child development
       al., 2007). WHO and UNICEF are continuing to                within health systems (Friedman, 1970, 1975;
       work on incorporating a developmental approach              Haggerty & Friedman, 2003; Richmond 1967;
       in primary health care.                                     Shonkoff & Kennell, 1992; Shonkoff, 1993; Ven-
           Because of the small amount of research on              ter, 1997b; Shonkoff & Phillips, 2000; Shonkoff
       feasible models in developing countries, there              & Meisels, 2003; Shonkoff, 2006). This field has
       is limited information on what needs to be done             been cross-fertilized by paediatrics, child psychol-
       to integrate these actions and interventions into           ogy, child development, early intervention and
       health providers’ practices, and whether they are           other related disciplines, and thus combines the
       effective. Studies from Brazil (Figueiras et al.,           disciplines of paediatrics, child health and child
       2003), India (Bhatia & Joseph, 2000; Kalra, Seth            development. The exact number and distribution
       & Sapra, 2005), Singapore (Lian et al., 2003)               of developmental–behavioural paediatricians
       and Turkey (Ertem et al., 2009) have highlighted            around the world is unknown. In the DDEC
       deficits in the knowledge of primary health care            Survey, 55% of respondents identified themselves
       providers in this area. Three studies from devel-           as developmental–behavioural or developmental
       oping countries have shown promising results                paediatricians. In some countries, such as Tur-
       in training clinicians to address specific areas            key and India, small-scale training programmes
       including identification of developmental dis-              have been started, to establish tertiary centres to
       abilities (Mathur et al., 1995; Wirz et al., 2005),         train further leaders. There is an urgent need to
       promotion of parenting skills and psychosocial              promote developmental–behavioural paediatrics
       stimulation (Powell et al., 2004), and counsel-             internationally, to develop training programmes
       ling caregivers on promoting child development              for paediatricians, and to share information
       during visits for acute minor illness (Ertem et al.,        between clinicians, academicians, and researchers
       2006). These studies, however, provide limited              around the world.




                                                              12
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Developmental difficulties in early childhood

  • 1. CHILD AND ADOLESCENT HEALTH AND DEVELOPMENT  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■ DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD Prevention, early identification, assessment and intervention in low- and middle-income countries A REVIEW CAH
  • 2. WHO Library Cataloguing-in-Publication Data Developmental difficulties in early childhood: prevention, early identification, assessment and intervention in low- and middle-income countries: a review. 1.Child development. 2.Child welfare. 3.Child health services. 4.Health promotion. 5.Developing countries. I.Ertem, Ilgi Ozturk. II.World Health Organization. ISBN 978 92 4 150354 9 (NLM classification: WS 105) © World Health Organization 2012 All rights reserved. Publications of the World Health Organization are available on the WHO web site (www.who.int) or can be purchased from WHO Press, World Health Organization, 20 Avenue Appia, 1211 Geneva 27, Switzerland (tel.: +41 22 791 3264; fax: +41 22 791 4857; e-mail: bookorders@who.int). Requests for permission to reproduce or translate WHO publications – whether for sale or for noncommercial distri- bution – should be addressed to WHO Press through the WHO web site (http://www.who.int/about/licensing/copy- right_form/en/index.html). The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of the World Health Organization concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted lines on maps represent approximate border lines for which there may not yet be full agreement. The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by the World Health Organization in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by the World Health Organization to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall the World Health Organization be liable for damages arising from its use. The named author is responsible for the views expressed in this publication. Design by minimum graphics Printed and disseminated with support from UNICEF (Turkey Country Office and CEECIS Regional Office). Printed in Turkey
  • 3. CONTENTS Acknowledgements v Chapter 1. Introduction and overview 1 Scope of the review 2 Terminology 2 The WHO Developmental Difficulties in Early Childhood Survey 3 Construction of the survey 3 Identification of respondents 3 Limitations of the survey 4 Outline of chapters 4 Chapter 2. Early childhood development and health care systems 6 Purpose of chapter and additional key references 6 Conceptualization of child development 7 The importance of the early years 8 The role of the health care system 9 Summary of research 10 The role of primary health care 11 Developmental–behavioural paediatrics 12 Conclusions and implications for action 13 Chapter 3. Epidemiology of developmental difficulties in young children 14 Purpose of chapter and additional key references 14 Conceptualization 14 Summary of research from LAMI countries 14 Conclusions and implications for action 17 Chapter 4. Developmental risks and protective factors in young children 18 Purpose and scope of chapter 18 Conceptualization of risk and protective factors 18 Resilience and protective factors 18 Risk factors 19 The life-cycle approach to developmental risk factors 20 Summary of research from LAMI countries 21 Resilience and protective factors in young children 21 Risk factors in young children 22 Conclusions and implications for action 31 Chapter 5. Prevention of developmental difficulties 33 Purpose of chapter and additional key resources 33 Conceptualization 34 A model for preventing developmental difficulties in early childhood 34 Research in LAMI countries 35 iii
  • 4. DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD An exemplary model from a developing country: the WHO/UNICEF Care for Child Development Intervention 38 Conclusions and implications for action 39 Chapter 6. Early detection of developmental difficulties 41 Purpose of chapter 41 Conceptualization 41 Research in LAMI countries 42 An example from a developing country 47 Conclusions and implications for action 50 Chapter 7. Developmental assessment of young children 51 Purpose of chapter and additional key references 51 Conceptualization 51 Research in LAMI countries 53 Assessment processes 53 Assessment instruments 54 Conclusions and implications for action 57 Chapter 8. International classifıcation systems for developmental difficulties in young children 59 Purpose and scope of the chapter and additional key resources 59 Conceptualization 59 The Diagnostic Classification of Mental Health and Developmental Disorders   of Infancy and Early Childhood 60 The International Classification of Diseases 61 International Classification of Functioning, Disability, and Health 61 Application of classification systems 62 Strengths of the classification systems and areas that require improvement 63 Research in LAMI countries 65 Conclusions and implications 65 Chapter 9. Early intervention (EI) 67 Purpose and scope of the chapter and additional key resources 67 Conceptualization 68 What are EI services? 69 Who are EI services for? 69 What major improvements are needed in the conceptualization of EI? 70 Evidence-based best practices in early intervention 71 Summary of research in LAMI countries 71 Important questions for future research 74 An exemplary model from LAMI countries 75 Conclusions and implications for action 77 Chapter 10. From prevention to intervention: consensus of experts 78 Advancing policy related to developmental difficulties in early childhood at national levels 78 Bringing down barriers using common international approaches and platforms 79 Increasing local capacity by training personnel 79 Increasing capacity in other specialities related to developmental difficulties 80 Empowering caregivers 80 Conducting research 80 References 81 Annex 1 101 iv
  • 5. ACKNOWLEDGEMENTS T he World Health Organization wishes to express its deep gratitude to the author of this review, Dr Ilgi Ozturk Ertem, Professor of Pediatrics, Director, Developmental-Behavioral Pediatrics Divi- sion, Ankara University School of Medicine, Ankara, Turkey, and visiting professor (2006–2007) at Yale University School of Medicine Department of Pediatrics, New Haven, CT, USA. The project was led and supervised by Dr Meena Cabral de Mello, Senior Scientist, Department of Maternal, Newborn, Child and Adolescent Health, WHO, Geneva. This document was reviewed internally by members of the WHO Department of Child and Adolescent Health and the Disability and Rehabilitation Team, and externally by international experts in the field including: Dr Vibha Krishnamurty, Director, Ummeed Child Development Centre, Mumbai, India; Profes- sor Nicholas Lennox, Director, Queensland Centre for Intellectual and Developmental Disability, Brisbane, Australia; Dr Shamim Muhammed, Sangath Organization, Goa, India; Dr Olayinka Omigbodun, Depart- ment of Psychiatry, University of Ibadan, Ibadan, Nigeria; Professor Trevor R Parmenter, Director, Centre for Developmental Disability Studies, Sydney, Australia; Professor Atif Rahman, Chair, Department of Child Psychiatry, University of Liverpool, Liverpool, England; Dr Chiara Servili, WHO Eritrea Country Office Asmara (2008); Professor Rune Simeonsson, Professor of School Psychology and Early Childhood Educa- tion, University of North Carolina, Chapel Hill, USA; Dr Aisha Yousafzai, Child Health and Disability, Aga Khan University Human Development Program and Aga Khan University Medical College, Department of Paediatrics and Child Health, Karachi, Pakistan, and Dr Nurper Ulkuer, Chief, Early Childhood Develop- ment Unit/PDO, United Nations Children’s Fund, USA. Federico Montero and Alana Officer, WHO Disability and Rehabilitation Team, Dr Mercedes de Onis, WHO Department of Nutrition and Dr Tarun Dua, WHO Department of Mental Health provided invalu- able comments and suggestions. Thanks are due to Professor Michael Guralnick (President of the International Society of Early Interven- tion), Professor David J Schonfeld (past President of the Society of Developmental Behavioral Pediatrics and director of the Developmental Behavioral Pediatrics Division, Cinninnati Children’s Hospital), Professor Matthew Melmed (Director of Zero to Three), and Drs John M Levental, Brian Forsyth and Carol Weitz- man (Yale University School of Medicine) for their review and comments on the survey, Developmental Difficulties in Early Childhood. Dr Ertem’s consultations with Professor Barry Zuckerman (Chairman of Pediatrics, Boston University School of Medicine, Boston, USA), for this review was supported by a Leadership Development, Fellow’s Collaboration grant from Zero to Three. We also thank Zero to Three for providing the gift of an issue of Zero to Three Journal for the respondents of the survey. Most importantly, we are grateful to the numerous experts around the world for their invaluable con- tributions to the Developmental Difficulties in Early Childhood Survey. These include: Argentina: Horacio Lejerraga, MD, Head of Depart­ment of Growth and Development. Hospital de Pediatría Garrahan. Buenos Aires, Argentina. hlejarraga@garrahan.gov.ar Australia: Frank Oberklaid, MD, Professor, Centre for Community Child Health, Royal Children’s Hospital, Melbourne, Victoria, Australia. frank.oberklaid@rch.org.au Bangladesh: Naila Khan PhD, Professor, Child Development and Neurology Unit, Dhaka Shishu (Children’s) Hospital, Sher-e-Bangla Nagar, Dhaka, Bangladesh. naila.z.khan@gmail.com Brazil: Jose Salomao Schwartzman, MD, Professor, Developmental Disorders Postgraduation Program, Mackenzie Presbyterian University. São Paulo,Brazil josess@terra.com.br v
  • 6. DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD Bulgaria: Aneta Popivanova, MD, Assistant Professor of Neonatology, University Clinic of Neonatology, University Hospital of Obstretics and Gynaecology, Sophia, apopivanova@abv.bg Canada: Emmett Francoeur, MD, Director, Child Development Program and Developmental Behavioral Pediatric Services, Montreal Children’s Hospital, McGill University Health Center, Montreal Children’s Hospital, Montreal, Quebec, Canada. emmett.francoeur@mcgill.ca Chile: Paula Bedregal, MD, MPH, PhD, Professor of Public Health, School of Medicine, Pontificia Univer- sidad Católica de Chile, Santiago, Chile, pbedrega@med.puc.cl China: Jin Xing Ming, MD, Department of Development and Behavioral Pediatrics, Shanghai Children’s Medical Center, School of Medicine, Shanghai Jiaotong University, Shanghai 200127, China, zhujing7@ public7.sta.net.cn Egypt : Ala’a Ïbrahim Shukrallah MD, Head of Training and Research Unit, Development Support Centre, 30 Haroun St, Geiza, Egypt, alaashuk@yahoo.com France: Phillipe Compagnon, MD, Hôpital Sainte Thérèse, Bastogne, Belgium philippe.compagnon@ wanadoo.fr Gaza Strip and West Bank: Alam Jarrar, MD, Director, Rehabilitation Program, West Bank and Gaza, Ra- mallah, Palestine, allam@pmrs.ps Georgia: Nana Tatishvili, MD, Medical director and head of neurology service, M.Iashvili Central Childrens Hospital, Tbilisi, Georgia. n_tatishvili@mail.ru India: MKC Nair, MD, Professor of Pediatrics & Clinical Epidemiology Director, Child Development Centre Medical College, Thiruvananthapuram Kerala, India. nairmkc@rediffmail.com Vibha Krishnamurthy, MD, Director, Ummeed Child Development Center, Mumbai, India. vibha.krish@ gmail.com Indonesia: Anna Alisjahbana, MD, PhD, Professor Emeritus, Founder and Chairperson Surya Kanti Foundation (YSK), “Center for the Development of Child Potentials” Consultant & Advisor, Bandung, Indonesia. alisja_a@melsa.net.id Israel: Gary Diamond, MD, Director, Child Development Services, Clalit Health Maintenance Organization, Dan Region, Israel, and Vice Director Child Development Institute Schneider Childrens Medical Center of Israel, Petah Tikva, Israel. diamondg@zahav.net.il Jordan: Saleh Al-Oraibi, PhD, MCSP, Assistant Professor, AL- Hashmite University , Faculty of Allied Health Sciences, Physical Therapy and Rehabilitation Department, Zarka, Jordan, so55@hu.edu.jo Kyrgyzstan: Nurmuhamed Babadjan, Chief of pediatric rehabilitation department, National Center of Pediatrics. nurmuhamed-babad@mail.ru Gulmira Nagimidinova, Director of IMCI Center of National Center of Pediatrics and Child Surgery, assistent of department of family medicine of Kyrgyz State Medical Academy, Bishkek, Krygyzstan. nt_gulmira@yahoo.com Lebanon: Moussa Charafeddine, Vice President Inclusion International, Secretary General Lebanese Parents & Institutional Associations for Intellectually Disabled, President Of MENA Region Inclusion International, President, Friends of Disabled Association-Lebanon, Beirut, Lebonon. moussa@friends- fordisabled.org.lb Malaysia: Amar Singh HSS, MD, Senior Consultant Paediatrician, Consultant Community Paediatrician Head of Paediatric Department, Ipoh Hospital, Perak, Malaysia. amimar@pc.jaring.my Pakistan: Zeba A. Rasmussen, Vice Chairman, Chief Executive Officer, Mehnaz Fatima Educational and Welfare Organization, Shahrah-e-Quaid-e-Azam Near Family Health Hospital, Jutial , Gilgit, Pakistan. zebarasmussen@yahoo.com, zeba@comsats.net.pk Phillipines: Alexis Reyes, MD, Professor, Institute of Child Health and Human Development, University of the Philippines, National Institutes of Health, Manila, Philippines. alexis7591@gmail.com Romania: Adrian Toma, MD, Chief of the Neonatology Unit, “Panait Sarbu” Obstetrics and Gynecology Hospital, Bucharest, Romania. tomaotiadi@yahoo.com vi
  • 7. ACKNOWLEDGEMENTS Russian Federation: Akaterina Klochkova, PhD, Head of physiotherapy department, St. Petersburg Pavlov Medical University, St Peterburg Early Intervention Institute, St Petersburg, Russian Federation. katya@ klo.ioffe.ru Saudi Arabia: Saleh M. Al Salehi Al Harbi, MD, Medical Director, Children’s Hospital, Consultant develop- mental behavioral pediatrics, King Fahad Medical City, Riyadh, Saudi Arabia, sssnm3@hotmail.com, salsalhi@kfmc.med.sa Singapore: Rosebeth Marcou, MD, Developmental and Behavioural Paediatrician, Raffles Hospital, Singa- pore. drmarcou@gmail.com South Africa: Colleen Adnams, MD, Senior Specialist and Lecturer Head, Developmental (Clinical) Service and Division of Paediatric Neurosciences, Red Cross War Memorial Children’s Hospital and School of Child and Adolescent Health, University of Cape Town, South Africa. Colleen.Adnams@uct.ac.za Turkey: Drs Ilgi Ertem, Derya Gumus Dogan, Bahar Bingoler Pekcici, Ozlem Unal. Developmental-Behavioral Pediatrics Division, Department of Pediatrics, Ankara University School of Medicine, Ankara, Turkey. ertemilgi@yahoo.com United Kingdom: Val Harpin, MD, Consultant Paediatrician (neurodisability), Ryegate Children’s Centre, Sheffield, United Kingdom, val.harpin@sch.nhs.uk United Republic of Tanzania: Augustine Massawe, MD, Senior Lecturer, Consultant Paediatrician and neonatologist, Muhimbili National Hospital, Muhimbili University College of Health Sciences, Dar es Salaam,Tanzania. draugustine.massawe@gmail.com United States of America: David J. Schonfeld, MD, Director, Division of Developmental and Behavioral Pediatrics Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States. david. schonfeld@cchmc.org Viet Nam: Tran Thi Thu Ha, MD, Vice Director of the Rehabilitation Department, National Hospital of Pediatrics, Rehabilitation Director, Hope Center, Hanoi, Vietnam. mdthuha@yahoo.com For further information about this document please contact Meena Cabral de Mello, Senior Scientist and WHO Focal Person for Early Childhood Development in the Department of Child and Adolescent Health, WHO/HQ, who led and managed this project. This document is a part of a series of evidence based reviews intended to guide interventions to improve the health, growth and development of children, particularly those living in resource-poor settings. The other reviews of relevance are: ● A critical link: Interventions for physical growth and psychological development. WHO/CHS/CAH/99.3 (1999). ● Family and community practices that promote child survival, growth and development: A review of the evidence. WHO. ISBN 92 4 159150 1 (2004). ● The importance of caregiver–child interactions for the survival and healthy development of young children. WHO. ISBN 924159134X (2004). ● Mental health and psychosocial well-being among children in severe food shortage situations. WHO/MSD/ MER/06.1 (2006). ● Responsive parenting: interventions and outcomes (2006). Bulletin of the World Health Organization, 84:992–999. ● The role of the health sector in strengthening systems to support children’s healthy development in communities affected by HIV/AIDS: A review. WHO. ISBN 9241594624. (2006). ● Early child development: A powerful equalizer (2007). Final Report for the World Health Organization’s Commission on Social Determinants of Health. http://www.who.int/child_adolescent_health/documents/ ecd_final_m30/en/ ● The Lancet: Child development in developing countries series. The Lancet, Vol 369 January 6, 2007. http://www.who.int/child_adolescent_health/documents/lancet_child_development/en/index.html vii
  • 8. DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD ● The Lancet: Child Development 1. Inequality in early childhood: risk and protective factors for early child development. Lancet 2011; 378: 1325–38 http://www.thelancet.com/journals/lancet/article/PIIS0140- 6736%2811%2960555-2/fulltext. ● The Lancet: Child Development 2: Strategies for reducing inequalities and improving developmental outcomes for young children in low-income and middle-income countries. Lancet 2011; 378: 1325–38. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2811%2960889-1/fulltext ● Facts for life. UNICEF. Fourth edition (2010). ISBN: 9789280644661. To obtain copies of the above documents and for further information, please contact: Department of Maternal, Newborn, Child and Adolescent Health World Health Organization 20 Avenue Appia 1211 Geneva 27 Switzerland Tel: +41 22 791 3281 Fax: +41 22 791 4853 Email: cah@who.int Web site: http://www.who.int/child-adolescent-health viii
  • 9. 1 Chapter Introduction and overview T he majority of the world’s children live in low- and middle-income (LAMI) countries. Often, in these countries, the health care system is the only system that has the potential to reach most young children and their families. For centuries, clinicians, researchers and advocates around the world have been working to prevent, diagnose and treat childhood illness, so that children can enjoy good health and reach adulthood. This task continues to be a challenge. There is still an unacceptable disparity between high-income and LAMI countries with respect to indicators for child survival and health. Equally unacceptable is the disparity between countries in the range The majority of world’s children live in low- and middle- of supports available to help children develop income countries, Nicaragua. © WHO-342031/C.Gaggero optimally, and to prevent, detect and manage developmental difficulties during infancy and early childhood. development, countries are categorized as high- Despite long experience in fighting childhood income or low- and middle-income according to illness and mortality, health care providers in the World Bank definition (www.siteresources. LAMI countries face new challenges in promot- worldbank.org/DATASTATISTICS/.../CLASS. ing child development. There is, nevertheless, a XLS accessed 21.04.2011). wealth of information on this topic, generated by Developmental difficulties during early researchers and clinicians working in resource- child­ ood are increasingly recognized in LAMI h poor conditions. The main premise of the present countries as important contributors to morbidity review lies in the words of the late Professor Mujdat in children and adults. Health care systems in Basaran, a renowned paediatrician in Turkey: “We high-income countries provide multiple oppor- must generate our own science. We must search tunities for the prevention, early identification and research for information that is pertinent for and management of developmental difficulties our own circumstances and we must contribute in young children. Interventions to improve the to the production of the science that will help us development of young children are becoming move forward.” This review therefore compiles the increasingly available in LAMI countries, and wealth of information that has already accumu- include low-cost strategies, such as addressing lated in a systematic framework that can be used malnutrition and iron deficiency, training car- by health care providers in LAMI countries. egivers, increasing psychosocial stimulation and In this review, the term “developmental dif- providing community-based rehabilitation. ficulties” is used to refer to a range of difficulties Infancy and early childhood are the best time experienced by infants and young children, for the prevention and amelioration of problems including developmental delay in the areas of that could potentially cause developmental dif- cognitive, language, social-emotional, behav- ficulties and affect brain development across the ioural and neuromotor development. “Early lifespan. A focus on prevention and early inter- childhood” and “young children” relate to the vention for developmental difficulties requires age range 0 to 3 years. Since economic status is an understanding of the magnitude and nature the most important factor determining human of the problems, to ensure a match between the 1
  • 10. DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD interventions delivered and what is needed by the information on specific developmental risk fac- children, their families and their communities. tors, such as human immunodeficiency virus Many families have contact with the health care (HIV) infection and acquired immunodeficiency system most often – and sometimes only – when syndrome (AIDS), low birth weight, malnutrition their children are young. Health care encounters and chronic illness. This review should not be for young children are, therefore, important viewed as a general resource for early childhood opportunities for clinicians in LAMI countries to disability or for specific developmental disabili- have a positive influence on development. ties, such as cerebral palsy, genetic or metabolic In most LAMI countries, the health care sys- disorders, autism spectrum disorders, and cogni- tem does not have a model for the promotion tive or sensory impairments. These topics deserve and monitoring of the development of children, specific attention beyond the scope of this review. prevention and early identification of risk factors Where relevent and possible, reference is made associated with developmental difficulties, and to other reviews or documents on these topics. early interventions. Health care providers may not have appropriate knowledge and expertise, Terminology and service delivery systems may be inadequate. However, by building local capacity, a systematic During the first three years of life, even children approach, specific to the needs of LAMI countries, who are showing typical development may be at can be developed. This review seeks to help health risk and in need of early intervention services. care providers and systems in LAMI countries to Children may show differences from the broad build such local capacity. range of healthy development without necessar- ily having a specific disorder or disability. This review includes issues related to a broad spectrum Scope of the review of problems that may affect development. There- WHO has previously published three reports fore, the term “developmental difficulty” is used related to child development. The first, A critical to include conditions that place a child at risk for link (WHO, 1999) summarized the importance suboptimal development, or that cause a child to of addressing both the nutritional and psycho- have a developmental deviance, delay, disorder social aspects of malnutrition and was a seminal or disability. The term is intended to encompass report on the need for developmentally based all children who have limitations in functioning biopsychosocial approaches to child health. The and developing to their full potential, e.g. those second, The importance of caregiver–child interac- living in hunger and social deprivation or born tions for the survival and healthy development of with low birth weight, as well as those with cer- young children (Richter, 2004) contained impor- ebral palsy, autism, cognitive imparments such tant information on the most critical component as Down syndrome, sensory problems, or other of child development, physical disabilities, such as spina bifida. the relational aspect. There is no universally accepted definition of The third, Early child- developmental pathology during infancy and early During the first hood development: a pow- childhood (Msall, 2006). “Developmental delay” three years of life, even erful equalizer (Irwin, is often defined as a deviation of development children who are showing Siddiqi & Hertzman, from the normative milestones in the areas of typical development may 2007), prepared for the cognitive, language, social, emotional and motor be at risk and in need WHO Commission on functioning. Neurodevelopmental disorders have of early intervention the Social Determinants been categorized as cerebral palsy, autism, genetic services. of Health, provided an syndromes and metabolic diseases affecting the in-depth look at the central nervous system (Batshaw, 2002). Often importance of social infants and young children with any kind of dif- determinants in shaping child development ficulty require a broad range of services, referred This fourth report includes information to as early intervention. While some disabilities from low- and middle-income countries on the merit specified services, there are widely rel- conceptualization, epidemiology, prevention, evant common approaches that can be delivered detection, assessment and early management of through health systems for the prevention, early the broad spectrum of developmental risk factors detection and management of developmental dif- and developmental difficulties in children aged ficulties. An in-depth knowledge of the function- 3 years and under. It does not contain in-depth ing and needs of the child, family and community 2
  • 11. CHAPTER 1. INTRODUCTION AND OVERVIEW is often more important than the category of the The following WHO projects also informed the pathology. For this reason, this review adopts construction of the DDEC Survey: a non-categorical approach, as recommended ● Atlas: Country Resources for Neurological by pioneers in the fields of early intervention Disorders (WHO 2004b) and children with special needs (Msall et al., ● Mental Health Atlas, (WHO 2005a) 1994; Msall, 2006; Stein & Silver, 1999; Stein, ● WHO AIMS: Mental Health Systems in low- 2004). This non-categorical approach parallels and middle-income countries: a WHO-AIMS that of the WHO International Classification of cross-national analysis (WHO 2005b) Functioning, Disability and Health for Children ● Atlas: Child and adolescent mental health and Youth (ICF-CY) framework (WHO, 2007), resources: Global concerns, implications for which is explained in detail in Chapter 8 (Lollar the future (WHO 2005c) & Simeonsson, 2005; Simeonsson, 2007). ● Atlas: Epilepsy care in the world (WHO 2005d) ● Atlas: Global resources for persons with intel- The WHO Developmental Difficulties lectual disabilities (WHO 2007b). in Early Childhood Survey A broad literature search was conducted to iden- There is little information available about how tify key publications that examined similar con- health care systems are functioning with regard structs. A study conducted by the International to the prevention, early detection and early man- Society of Prevention of Child Abuse and Neglect agement of developmental difficulties. The Devel- (ISPCAN, 2008) and another of structures and opmental Difficulties in Early Childhood (DDEC) practices of well-child care in ten high-income Survey was therefore developed to identify the countries (Kuo et al., 2006) provided useful input structures and practices in different countries. to the DDEC. Sample results from this survey are provided in The reliability of the questions was checked summary form at the beginning of the relevant by giving the survey to two expert respondents chapters in this review. The detailed results will in each of four countries. When major disaggre- be presented elsewhere. ments were found, questions were removed; for minor disagreements, questions were reworded. Construction of the survey Identification of respondents A number of key questions were identified and discussed with a group of experts within the The networks of WHO, UNICEF, the Society for WHO Departments of Child and Adolescent Developmental Behavioral Pediatrics, the Inter- Health and Development, Mental Health, and national Society for Early Intervention and Zero Nutrition, and the Disability and Rehabilitation to Three were contacted to identify key experts Team. In addition, a number of internationally around the world who met all of the following renowned experts in the fields of early childhood three criteria. development, developmental difficulties and early 1. The person was the key expert (or one of the intervention provided input to and comments key experts) in the country on early identifica- on the content and structure of the survey (see tion, early intervention and rehabilitation of Acknowledgements). young children aged 0–3 with developmental risks (such as low birth weight or malnutrition) and difficulties (such as developmental delay, cerebral palsy, Down syndrome). 2. The person had in-depth knowledge about the health care system and the training of primary child health care providers in the country. Pref- erence was given to academic paediatricians responsible for training health care providers. 3. The person had good command of English. A literature search was also conducted to identify professionals who had published on the concepts Social interactions begin early in life: 3-month old, Niger. © UNICEF/NYHQ2009-2569/Holtz in the DDEC Survey. When an expert was identi- 3
  • 12. DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD of the early years and the role of the health care system in ensuring the optimal development of all children. The term “child development” indicates the advancement of the child to reach his or her optimal potential in all areas of human function- ing – social, emotional, cognitive, communication and movement. In the past few decades, new imaging techniques have enabled us to visualize how the human brain develops. This chapter sum- marizes comtemporary theory on early childhood development and provides a framework for why this concept deserves to be addressed in detail within health systems around the world. Early stimulation is crucial to optimal development: one- year old with Down syndrome, Turkey. Photo: Canan Gul Gok Chapter 3 provides a framework for under- standing the epidemiology of developmental difficulties in young children by reviewing the fied, at least one of the networks was contacted existing evidence. to confirm that he or she was suitable to be the Chapter 4 introduces a conceptual framework, respondent for the country. In total, experts from the “Life cycle approach to developmental risk 35 countries were identified and invited to par- factors”, which organizes the risk factors and pro- ticipate in the Web-based survey. tective factors for child development in a way that Respondents from 31 countries completed helps countries and communities determine what the survey, comprising 94% of those identified needs to be done. Research in LAMI countries on and eligible. Of these, 6 were from low-income preconceptional developmental risk factors that countries, 17 from middle-income countries and have not previously been fully explored, such 8 from high-income countries. Despite the small as adolescent parenting, unintended pregnancy, number of countries included, the total popula- inadequate birth interval and consanguinity, are tion of the countries in the survey is approxi- also reviewed. mately 70% of the world population. Chapter 5 provides a new conceptual frame- work of interventions that can be delivered within the health care system for the prevention of devel- Limitations of the survey opmental difficulties in young children. Examples There are two main limitations of the DDEC of research on prevention in LAMI countries are survey – generalizability and reliability. Its gen- given, and an exemplary programme, the WHO/ eralizability is limited by the fact that countries UNICEF Care for Child Development Interven- that were included comprise a portion of the world tion, is summarized. population. Countries particularly in Africa may Chapter 6 deals with early recognition of not be well represented in this survey. Further- developmental difficulties in young children. more, since this survey represents information Early recognition allows both preventive and provided by one expert opinion from each coun- therapeutic approaches to be implemented and try, the question of reliability and generalizability is a crucial step in addressing the problems. In of the responses remains a limitation. Respond- high-income countries, the integration of devel- ents were knowledgeable, were asked to report opmental monitoring into health care encounters about their country as a whole, and to use data has been recognized as an important strategy and other expert opinions to respond to the ques- for the early detection of developmental dif- tions when possible. However, their views may ficulties. This chapter promotes developmental not reflect the situation in all parts of the country. monitoring in LAMI countries, summarizing its conceptualization and addressing key ques- tions of importance for LAMI countries. A novel Outline of chapters method of developmental monitoring, which is The body of this review comprises nine chapters. currently being used in Turkey and which has At the beginning of the first eight chapters, the been specifically developed by the author with relevant results from the DDEC Survey are given. attention to the needs of health care providers in Chapter 2 provides a summary of the concep- LAMI countries, is also introduced. This method tualization of child development, the importance is fully complementary with the WHO/UNICEF 4
  • 13. CHAPTER 1. INTRODUCTION AND OVERVIEW Care for Child Development Intervention. When used together, these two methods may provide a “…in the context of the successes of systematic, family-centred and strengths-based current primary health care child survival initiatives, approach to monitoring the development of young it is essential in low-income countries that increased children, to prevent the most common cause of emphasis be placed on prevention and early developmental delay (understimulation), to detect identification of developmental disabilities within developmental difficulties and to provide early the primary and maternal and child health care intervention. systems. Those systems must in turn be linked to and Chapter 7 focuses on the developmental supported by secondary and tertiary assessment of young children, to establish a medical services.” diagnosis, ascertain their level of functioning, determine their needs for additional support and Committee on Nervous System Disorders services, and enable them to reach such services. in Developing Countries, 2001 In many resource-rich countries, a team of clini- cians from multiple disciplines evaluate the child and the family. In countries with fewer resources, the evaluation of the child may be conducted by and Youth (WHO, 2007), and provides examples one or two clinicians with a less broad experience. of how this system can be applied to capture the The basic principles of developmental assess- functioning and needs of young children. It also ment, however, can be applied by an experienced provides a summary of the framework developed clinician in any setting, to give a comprehensive by Zero to Three (2005). assessment leading to appropriate interventions. Chapter 9 provides a summary of early inter- This chapter, therefore, provides information on ventions to guide health care providers and health the basic principles of developmental evaluation, care policy-makers in LAMI countries in their the types of developmental assessment that are efforts to improve the lives of developmentally desirable and how to begin building an infrastruc- vulnerable children and their families. ture for such assessments. Chapter 10 presents the key actions suggested Chapter 8 summarizes information on clas- by the respondents to the DDEC Survey. These sification systems for developmental difficulties have been compiled under headings that emerged in young children that can be used in LAMI from a qualitative analysis of the open-ended countries. Internationally endorsed classifica- questions in the survey, i.e. (a) advancing policy tions facilitate the gathering, conceptualiza- related to developmental difficulties in early child- tion, interpretation and sharing of information hood at national level; (b) breaking down barri- between clinicians and researchers around the ers using common international approaches and world. Countries may also use classifications to platforms; (c) increasing local capacity by train- determine whether children are eligible for certain ing personnel; (d) increasing capacity in other services. This chapter places specific emphasis specialities related to developmental difficulties; on the WHO International Classification of (e) empowering caregivers; and (f) conducting Functioning, Disability and Health for Children research. 5
  • 14. 2 Chapter Early childhood development and health care systems Purpose of chapter and additional DDEC Survey results key references T A number of questions in the DDEC he recent Lancet series, “Early childhood Survey requested information on the development in developing countries”, infrastructure and role of the health services estimated that over 200 million children in in addressing developmental difficulties in developing countries are not reaching their full young children. In most countries, access developmental potential (Grantham-McGregor et to health care providers was not an issue. al., 2007). The Disease Control Priorities project Trained health care providers were either has stated that 10–20% of individuals have learn- within walking distance or accessible by ing or developmental difficulties (Durkin et al., transportation that was affordable to most 2006). Developmental difficulties are the most of the population. Continuity of health care, common causes of long-term morbidity (Com- however, was a problem. Child development mittee on Nervous System Disorders in Develop- can best be addressed if the same health ing Countries, 2001). This chapter summarizes care provider follows the child over time. the conceptualization of child development, the In most countries, however, children did importance of the early years of life and the role not receive primary preventive health of the health care system in ensuring optimal care, or care for acute or chronic illness, development of all children. continuously from the same providers. In In-depth information on the theoretical con- most low-income countries, but not high- ceptualization of child development is beyond the and middle-income countries, home-visiting scope of this review. Readers are referred to other was available for the majority of children. key documents that contain detailed information In all LAMI countries, there was a shortage on contemporary developmental theories and of primary health care personnel. General interventions during infancy and early childhood paediatricians, paediatric subspecialists, (Shonkoff & Phillips, 2000; Shonkoff & Meisels, and professionals trained to deal with 2003; Guralnick, 2005a; Myers, 1995; Zeanah, children with special needs were also few 2000; National Scientific Council on the Develop- in number. Although some preservice or ing Child, 2007). in-service training programmes existed, The Institute of Medicine has published a primary health care providers did not book specifically intended to guide health care generally have the expertise to deal with systems, which reviewed in detail the potential developmental difficulties. response of such systems to developmental disor- ders (Committee on Nervous System Disorders in Developing Countries, 2001). Durkin et al. (2006) reviewed the disease burden of learning and developmental difficulties and ways to address these problems. A number of recent Lancet series – on neonatal survival (Darmstadt et al., 2005; Knippenberg et al., 2005; Martines et al., 2005, Lawn, Cousens & Zupan, 2005), child development in developing countries (Engle et al, 2007; Grantham-McGregor et al., 2007; Walker et al., 2007,), maternal and child undernutrition (Black et al., 2008), global 6
  • 15. CHAPTER 2. EARLY CHILDHOOD DEVELOPMENT AND HEALTH CARE SYSTEMS mental health (Barret, 2007; Bhugra & Minas, cal link (WHO, 1999) documented the critical 2007; Chisholm et al., 2007; Dhanda, 2007; Her- relationship between the nutritional status of a rman & Swartz, 2007; Horton, 2007; Jacob et child and his or her psychological development, al., 2007; Patel et al., 2007; Prince et al., 2007; and demonstrated the effectiveness of combin- Saraceno et al., 2007; Sartorius, 2007; Saxena et ing interventions to promote early childhood al., 2007) and disability (Groce & Trani, 2009; development with efforts to improve child health Gottlieb et al., 2009; Trani, 2009) – contain infor- and nutrition, in an integrated care model. The mation on addressing developmental difficulties report highlighted the importance of addressing in young children within health care systems. both the nutritional and psychosocial aspects of There are many international resources related malnutrition and was a seminal report on the to children with developmental difficulties. The need for developmentally based biopsychosocial United Nations (UN) has two conventions related approaches to child health. The second publica- to children with developmental difficulties: tion, The importance of caregiver–child interactions the UN Convention on the Rights of the Child for the survival and healthy development of young (United Nations, 1989), and the UN Convention children (Richter, 2004) contained important on the Rights of Persons with Disabilities (United information on the most critical component of Nations, 2006). Both affirm that children have the child development, the relational aspect. The right to develop to their full potential and that third, Early childhood development: a powerful equal- countries should guarantee that children with izer (Irwin, Siddiqi & Hertzman, 2007), prepared special needs receive the services they require. for the WHO Commission on the Social Deter- The second convention promotes and protects minants of Health, provided an in-depth look at the full and equal enjoyment of all human rights the importance of social determinants in shaping and fundamental freedoms by people with dis- child development. This report highlighted the abilities, and is legally binding for all Member need for sustained research activities to under- States. Article 25 of the Convention requires stand the effects of the environment on biological Member States to ensure access for persons with endowment and early childhood development, disabilities to health services that are gender- and for available evidence to inform actions to sensitive, including health-related rehabilitation. further child development social investment However, the Convention does not explicitly strategies at all levels define disability. The UN Standard Rules for the Equalization of Opportunities for Persons with Dis- Conceptualization of abilities, which was recognized by the UN General child development Assembly in 1993 (United Nations, 1993), is used for monitoring progress in addressing disability The term “child development” indicates advance- in countries. Importantly, this report addresses ment of the child in all areas of human functioning: the basic preconditions that need to be in place social and emotional, cognitive, communication to improve the quality of life of children with and movement. A long-standing debate in child developmental difficulties. development theory relates to the relative influ- WHO has previously published three reports ence of nature versus nurture. If nature is assumed related to child development. The first, A criti- to be predominant, child development follows a genetically programmed progression, influ- enced by biomedical risks. On the other hand, if nurture is considered more important, then the child’s development is primarily influenced by the caregiving environment – proximally by the primary caregivers and more distally by the larger community. The contemporary theoretical conceptual- ization of child development incorporates the importance of both nature and nurture, parallels the biopsychosocial model of health (Engel 1977), and builds on Bronfenbrenner’s bioecological model (Bronfenbrenner & Ceci, 1994). This model The health system has a key role in monitoring and promoting child development: Developmental Pediatrics postulates that human development takes place Division, Turkey. Photo: Dr. Ilgi Ertem through progressively more complex interactions 7
  • 16. DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD Figure 1. Conceptualization of child child, through the living and working conditions development (reproduced from of the caregivers, the educational, social and Ertem, 2011) health services, and the physical environment. For example, the child may be affected by the mother D IS T AL ENVIRONMENT or father being stressed because the workplace Co m m u ni ty oeconomic milieu is not accommodating their needs and desires S oc i as new parents. Bioecological theory holds that • • E N V IR O N H e all components – the biological, psychological, t IM AL M OX er s , f a m ENT P R a re g iv and social functioning of the child and his or al en il y th C m her dynamic interactions with the proximal and on Se rv vir distal environments – must be addressed when ice en Child supporting and monitoring child development s • Physical in primary care. Bronfenbrenner’s bioecological rvices perspective offers a useful lens for understanding and supporting young children and their fami- • Li l Se Mother Father lies. This conceptualization can be used in both vin cia individual clinical work and in developing model g So an programmes. Bronfenbrenner himself has stressed • d o w n rk ti the importance of recognizing and accepting o in g en rv n co nd in te t io the uniqueness and strength within each family ition s • Early ca du system and in crafting empowering relations with • E families (Swick & Williams, 2006). A more detailed explanation of how distal environments influence child development can be found in the Total Environmental Assessment between a “biopsychosocial” human being and the Model of Early Childhood Development (TEAM- persons, objects, symbols and systems in his or ECD) framework developed for the WHO Com- her proximal and distal environment. This inter- mission on Social Determinants of Health (Irwin, action is dynamic and the child plays an active Siddiqi & Hertzman, 2007). In the TEAM-ECD role from birth onwards. Figure 1 offers a practical framework, there are “spheres of influence” on schema for this theory (Ertem, 2011). Here, the early childhood development. These spheres are: biological and genetic endowment of the child is (1) the individual child, (2) the family and dwell- represented by the circle labelled “child”. Within ing, (3) residential and relational communities, this endowment are included concepts such (4) national, regional and global environments as physical health, temperament, personality, (including global health status, ecological, eco- developmental abilities, strengths, coping skills nomic, political and social environments), and (5) and vulnerabilities. The two other circles, labelled early childhood programmes and services. In each “mother” and “father”, represent the equivalent sphere of influence, social, economic, cultural and characteristics of each member of the child’s gender factors affect the quality of the proximal proximal caregiving environment – often the caregiving environment, which is instrumental for parents, but also other key caregivers and siblings. healthy development in early childhood. The arrows between the different members signify relationships and interactions between them. The intersecting arrows symbolize how relationships The importance of the early years between one pair shape and influence others in The importance of the early years in human devel- the system. The proximal environment includes opment is neither a new nor a Western concept; the child’s relationship with the primary caregiv- nor is it, in fact, a concept that is foreign to medical ers and everyday interactions, such as feeding, sciences. The works of Avicenna (980–1037), a comforting, playing and talking. This environ- Persian physician who is considered the father of ment is nested in a community of extended fam- modern medicine, and Darwin (1809–1882) the ily, neighbours and friends, and a socioeconomic founder of the theory of evolution, demonstrate milieu, which includes the workforce, the wealth that the concept of early childhood development and well-being of the country, and the health of has occupied the minds of physicians, philoso- the population. This distal environment directly phers, scientists and caregivers for hundreds of or indirectly influences the development of the years. According to Avicenna, the early years 8
  • 17. CHAPTER 2. EARLY CHILDHOOD DEVELOPMENT AND HEALTH CARE SYSTEMS are the most important stage in the life of an This construct can help clinicians, who are in individual: “the infant is exposed to problems fact a component of the holding environment for and difficulties soon after birth and in the early the mother. Approaches that foster the mother’s stages of childhood and these influence his psy- sense of competence and that empower her will chology and temperament, and hence his moral be effective; approaches that criticize her or make and ethical development” http://www.ibe.unesco. her feel inadequate will be counterproductive. org/publications/ThinkersPdf/avicenne.pdf A relationship-based, supportive, non-critical, accessed 12.07.2007). non-didactic approach to parents is the hallmark Darwin, on the other hand, kept detailed of many successful interventions. records of the development of his son, providing In the past few decades, new imaging tech- one of the first systematic studies of child develop- niques have provided further information on ment (Darwin, 1877). A large body of scientific the development of the human brain. Dynamic research has been conducted since these early brain-imaging technology has demonstrated attempts to understand, study and explain child that the full complement of neurons is formed development. before the third trimes- In addition to the bioecological model, two ter of pregnancy, but other theoretical concepts – attachment theory that the connections or Dynamic brain- and the concept of “the motherhood constellation” synapses between these imaging technology – provide guidance on how clinicians can support neurons largely develop has demonstrated that child development. Attachment theory, developed after birth. This synap- the full complement of by Bowlby (1978), suggests that a stable, respon- togenesis, and the later neurons is formed before sive, nurturing primary relationship enables the “pruning” processes that the third trimester of child to regulate his or her emotions and develop occur in the developing pregnancy, but that the a secure base from which to explore, learn and brain, are constructed connections or synapses form relationships with others. Attachment theory to a large degree in the between these neurons implies that interventions in primary care should early years within the largely develop after address the “caregiver–child” dyad and support caregiving environment. birth. parents in helping their infants develop secure The quality of the every- attachment. Research in developmental psychol- day actions of the par- ogy and child psychiatry has shown that a secure ents – smiling, talking, attachment to a primary caregiver is associated cuddling, singing, and responding to the infant with healthy emotional and cognitive functioning – shapes the circuitry of the developing brain in later life (Boris et al., 2000). Recent research (Shore, 1997; Hannon, 2003). on children raised in orphanages supports the It has also been established that stressors importance of early relationships and stimulat- during the early years affect brain architecture. ing environments during the early years of life, Shonkoff (2006) defines toxic stress as “strong, showing that the cognitive outcome of abandoned frequent, and/or prolonged activation of the body’s children brought up in institutions was mark- stress-management systems in the absence of edly below that of abandoned children placed in the buffering protection of adult support”. Pre- institutions but then moved to foster care (Nelson cipitants of toxic stress include extreme poverty, et al., 2007). recurrent physical or emotional abuse, chronic “The motherhood constellation” is a theoretical neglect, severe maternal depression, parental sub- construct developed by Stern (1998), a pioneer stance abuse and family violence. An important in infant development and mental health. He consequence of toxic stress is disruption of the refers to the birth of a child and the early years brain architecture, leading to stress-management as a specific era of emotional development for systems that respond at relatively low thresholds. the mother. The pregnancy and the birth of the These low thresholds persist throughout life, baby change her mental organization, so that increasing the risk of stress-related physical and her primary preoccupations become keeping the mental illness throughout childhood and the adult infant alive and protected, caring for the baby so years (Shonkoff, 2006). that he or she will become “her” baby and not just any baby (enabling attachment), and creating The role of the health care system a supportive, psychologically “holding” environ- ment that supports her mothering. Stern calls Many LAMI countries already have the infra- this construct “the motherhood constellation”. structure needed to support child development 9
  • 18. DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD within the health care system. For example, India has the world’s largest integrated early childhood development services; operational since 1975, functioning in thousands of centres and covering millions of children and mothers, these services aim to improve the health and development of children and families. In 2004, there were 5652 ICDS projects in India, 4533 in rural areas, 759 in tribal areas and 360 in urban areas (Ministry of Women and Child Development, 2009). In Turkey, local health care facilities are located at village level throughout the country, staffed with physicians, nurses and home-visiting midwives. Thus, the health care system in many countries can have a crucial role in promoting child devel- opment and in the prevention, early detection and management of developmental difficulties. The rationale behind this crucial role can be summarized in four key points, as noted below. 1. In any country, the health care system is often the only system that can potentially reach all young children and their families. 2. The biopsychosocial model of child develop- The health system in most countries is the only system ment recognizes that much, if not all, human that has potential to reach all families. © PAHO/WHO 319032 disease and disability are a function of the interaction between genes and the environ- 4. As a result of research showing the positive out- ment. Physical health and development, though comes of early intervention, there has been par- often viewed as separate components of child ticular emphasis in many developed countries well-being, are in fact inseparable. The factors on the early identification and management of that cause poor health, e.g. undernutrition, also developmental difficulties within health sys- affect development. Similarly, factors that cause tems. In most LAMI countries, the personnel poor development, e.g. an unresponsive caring and infrastructure for early intervention may environment, also affect health. WHO refers to not appear to be universally accessible. How- this as the “critical link” between physical health ever, most early intervention programmes for and psychosocial development (WHO, 1999). young children with developmental difficulties Any system intended to address one component, do not require extensive staffing, and work best therefore, must be equipped to address both. when administered through caregivers. The Often, this system is the health system. training of caregivers in early intervention is 3. Caregivers, families and communities gener- feasible in LAMI countries. As the availability ally have trust in, and contact with, the health of early intervention and community-based care system (Durkin et al, 2006; Committee rehabilitation increases, the need for the early on Nervous System Disorders in Developing detection of problems through the health care Countries, 2001; Engle et al., 2007). This con- system is becoming more evident. tact is most frequent when the child is young, for example for immunizations and growth monitoring, as well as for acute and chronic Summary of research illnesses. Such health care encounters are Research in high-income populations has shown excellent opportunities to strengthen families’ that promotion of development in paediatric efforts to promote their child’s development, health care encounters has many potential and may be the only chance available for pro- benefits for children and families. For decades, fessionals in developing countries to positively high-income countries have included within the influence carers of young children and to pre- health care system efforts to promote child devel- vent developmental difficulties. opment. These countries have also mainstreamed 10
  • 19. CHAPTER 2. EARLY CHILDHOOD DEVELOPMENT AND HEALTH CARE SYSTEMS the early detection of developmental difficulties one of the features of the health system that make and links to early intervention services. This it so important in addressing child development placing of health care delivery in a developmental issues in LAMI countries. context has benefits for both physical health and There are, however, many potential barriers development. This is especially attractive where in the primary health care system that can make developmental approaches are added to existing this task difficult. Continuity of care – receiving structures in routine primary care. There are health care from the same provider over a period many examples in high-income countries of how of time – is one of the most important principles a developmental approach has been incorporated and is crucial to the delivery of developmentally into primary care for young children (Regalado & appropriate health care. In the continuity-of- Halfon, 2001). These include Sure Start in Eng- care model, each child (and sometimes family) land (Roberts & Hall, 2000), the European Early is followed over time by the same health care Promotion Project which has taken place in eight provider. Studies in the United States during the countries (Roberts et al, 2002), Help me Grow 1970s showed the beneficial effects of receiving (Dworkin, 2006), Bright Futures (Green, 1994; continuous health care from the same provider Hagan, Shaw & Duncan, 2008; Knight, Frazer (Alpert et al., 1976; Gordis & Markowitz, 1971; & Emans, 2001), Healthy Steps (Niederman et Starfield et al., 1976). The benefits of continuous al., 2007; McLearn et al., 2004; Minkovitz et al., primary care over episodic care included: fewer 2001; Zuckerman et al., 1997), Reach Out and hospitalizations, operations, visits for illness, Read (Needleman et al.,1991), and Touchpoints and breaking of appointments; more health in the United States (Brazelton, 1999; Hornstein, supervision visits, use of preventive services, and O’Brien & Stadtler, 1997). In addition, research patient satisfaction; and has focused on the early detection and manage- lower costs (Alpert et al., ment of developmental difficulties (Council on 1976). Since the 1980s, Primary health care Children with Disabilities, 2006). developed countr ies providers are in a key Child mortality and morbidity patterns in have tried to ensure that position to address LAMI countries are changing dramtically. In each child has a continu- child development in most countries, childhood mortality has declined ous primary health care developing countries. considerably in the past 20 years. The major provider. More research Often they are the only causes of death have also changed. For example, is needed on the effects service providers who in Bangladesh, chronic diseases and injuries of continuity of care in reach young children and have overtaken infectious diseases as the lead- LAMI countries and the their families, and they ing causes of child death (Rahman et al., 2004c). changes to the system are generally trusted in Further research is needed in LAMI countries that would be needed to their communities. to understand these changes and improve the ensure such continuity. planning of appropriate policies to address the The quality of the new challenges. support given by the health care provider will depend on his or her training and experience in child development The role of primary health care concepts. The DDEC Survey indicated that health Primary health care providers are in a key position care providers, particularly in the LAMI coun- to address child development in developing coun- tries, generally do not have adequate training tries. Often they are the only service providers and experience in the prevention, early detection who reach young children and their families, and and management of developmental difficulties in they are generally trusted in their communities. young children. The limited research from LAMI In addition, their background enables them to countries also indicates that primary health care identify and take action against the biological and clinicians require training in counselling car- psychosocial causes of developmental difficulties. egivers on child development and detecting and The DDEC Survey found that, in most of the managing related difficulties (Powell et al., 2004; countries, health centres were readily accessible Rahman et al., 2004a, 2008; Turmusani, Vreede to the majority of the population. Home-visiting & Wirz, 2002; Walker et al., 2005; WHO, 1999, by health providers – an important vehicle for 2001a, 2006). WHO and UNICEF have developed integrating child development concepts into a number of resources to help train clinicians in health care delivery – was also routinely practised LAMI countries to address child development. in many of the LAMI countries. Accessibility is Community-based rehabilitation (CBR) interven- 11
  • 20. DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD tions promoted by WHO for the past 20 years, information, since each focuses on only one aspect for example, are becoming available for young of child development training and examines the children in developing countries (Beard, 2007; efficacy of training under controlled research Lozoff, Jimenez & Smith, 2006; Richter, 2004). conditions. More research and information are WHO/UNICEF training modules on “Care for needed from developing countries on the effec- child development intervention” (see Chapter 5 for tiveness and sustainability of comprehensive more information) have been available as a com- models for addressing child development within ponent of Integrated Management of Childhood health care systems. Illness (IMCI) (WHO, 2001a) and currently as an intervention that can be integrated into processes Developmental–behavioural paediatrics As a guide to progress in the area of develop- “…in the context of the successes of mental disorders, the US Institute of Medicine current primary health care child survival released a report in 2001 (Committee on Nerv- initiatives, it is essential in low-income countries that ous System Disorders in Developing Countries, increased emphasis be placed on prevention and early 2001), which recommended that “in the context identification of developmental disabilities within the of the successes of current primary health care primary and maternal and child health child survival initiatives, it is essential in low- care systems. Those systems must in turn be linked to income countries that increased emphasis be and supported by secondary and tertiary placed on prevention and early identification of medical services.” developmental disabilities within the primary and maternal and child health care systems. Those Committee on Nervous System Disorders systems must in turn be linked to and supported in Developing Countries, 2001 by secondary and tertiary medical services.” All levels of services should also be linked to dis- ciplines that can create the knowledge base for other than IMCI (WHO, 2001c). WHO has also the incorporation of child development concepts incorporated child development messages in the within health systems. Developmental–behav- training materials for the newly launched WHO ioural paediatrics has for decades pioneered the growth standards (Borghi et al., 2006; de Onis et introduction of concepts of child development al., 2007). WHO and UNICEF are continuing to within health systems (Friedman, 1970, 1975; work on incorporating a developmental approach Haggerty & Friedman, 2003; Richmond 1967; in primary health care. Shonkoff & Kennell, 1992; Shonkoff, 1993; Ven- Because of the small amount of research on ter, 1997b; Shonkoff & Phillips, 2000; Shonkoff feasible models in developing countries, there & Meisels, 2003; Shonkoff, 2006). This field has is limited information on what needs to be done been cross-fertilized by paediatrics, child psychol- to integrate these actions and interventions into ogy, child development, early intervention and health providers’ practices, and whether they are other related disciplines, and thus combines the effective. Studies from Brazil (Figueiras et al., disciplines of paediatrics, child health and child 2003), India (Bhatia & Joseph, 2000; Kalra, Seth development. The exact number and distribution & Sapra, 2005), Singapore (Lian et al., 2003) of developmental–behavioural paediatricians and Turkey (Ertem et al., 2009) have highlighted around the world is unknown. In the DDEC deficits in the knowledge of primary health care Survey, 55% of respondents identified themselves providers in this area. Three studies from devel- as developmental–behavioural or developmental oping countries have shown promising results paediatricians. In some countries, such as Tur- in training clinicians to address specific areas key and India, small-scale training programmes including identification of developmental dis- have been started, to establish tertiary centres to abilities (Mathur et al., 1995; Wirz et al., 2005), train further leaders. There is an urgent need to promotion of parenting skills and psychosocial promote developmental–behavioural paediatrics stimulation (Powell et al., 2004), and counsel- internationally, to develop training programmes ling caregivers on promoting child development for paediatricians, and to share information during visits for acute minor illness (Ertem et al., between clinicians, academicians, and researchers 2006). These studies, however, provide limited around the world. 12