Childhood Disability in Low- and Middle-Income Countries ...studies were coded as 1, case-control...

SUPPLEMENT ARTICLE

Childhood Disability in Low- and Middle-IncomeCountries: Overview of Screening, Prevention,Services, Legislation, and EpidemiologyPallab K. Maulik, MD, MSca, Gary L. Darmstadt, MD, MSb

Departments of aMental Health and bInternational Health, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland

The authors have indicated they have no financial relationships relevant to this article to disclose.

ABSTRACT

BACKGROUND.Childhood disability affects millions of children around the world, mostof whom are in low- and middle-income countries. Despite the large burden onchild development, family life, and economics, research in the area of childhooddisability is woefully inadequate, especially from low- and middle-income coun-tries.

OBJECTIVE. The objective of this review was to generate information about currentknowledge on childhood disability in low- and middle-income countries andidentify gaps to guide future research.

METHODS.Electronic databases (PubMed, Embase, PsycInfo) were searched by usingspecific search terms related to childhood disability in developing countries. TheCochrane Library was also searched to identify any similar reviews. Whole texts ofarticles that met study criteria were scrutinized for information regarding researchmethod, screening tools, epidemiology, disability-related services, legislation, andprevention and promotion activities. Quantitative and qualitative information wascollated, and frequency distributions of research parameters were generated.

RESULTS.Eighty articles were included in the review (41 from low-income coun-tries). Almost 60% of the studies were cross-sectional; case-control, cohort, andrandomized, controlled trials accounted for only 15% of the studies. Of the 80studies, 66 focused on epidemiologic research. Hearing (26%) and intellectual(26%) disabilities were the commonly studied conditions. The Ten Questionnairewas the most commonly used screening tool. Information on specific interven-tions, service utilization, and legislation was lacking, and study quality generallywas inadequate. Data on outcomes of morbidities, including delivery complica-tions and neonatal and early childhood illness, is particularly lacking.

CONCLUSIONS.With this review we identified potential gaps in knowledge, especiallyin the areas of intervention, service utilization, and legislation. Even epidemiologicresearch was of inadequate quality, and research was lacking on conditions otherthan hearing and intellectual disabilities. Future researchers should not onlyaddress these gaps in current knowledge but also take steps to translate theirresearch into public health policy changes that would affect the lives of childrenwith disabilities in low- and middle-income countries.

www.pediatrics.org/cgi/doi/10.1542/peds.2007-0043B

doi:10.1542/peds.2007-0043B

KeyWordschildhood disability, developing countries,impairment, sense-organ disorders, mentalretardation, low- and middle-incomecountries

AbbreviationsLAMI—low- and middle-incomeRCT—randomized, controlled trialTQ—Ten QuestionnaireWHO—World Health Organization

Accepted for publication Mar 15, 2007

Address correspondence to Gary L. Darmstadt,MD, MS, Department of International Health,E8153, Bloomberg School of Public Health,Johns Hopkins University, Baltimore, MD21205. E-mail: [email protected]

PEDIATRICS (ISSN Numbers: Print, 0031-4005;Online, 1098-4275). Copyright © 2007 by theAmerican Academy of Pediatrics

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INTERNATIONAL EFFORT AND research have led to sub-stantial reductions in the mortality rates of children

�5 years old1; however, research and progress in thearea of childhood disability has been seriously lagging,particularly in low- and middle-income (LAMI) coun-tries. An estimated 150 million children suffer fromsome kind of disability, and most live in the poorest partsof the world.2 Moreover, a majority of these childrensuffer the double burden of disability and its associatedstigmatization, leading to a marginalized life. The Bella-gio Group on Child Survival called on all internationalorganizations and funding agencies to support child-survival programs and outlined 4 steps: (1) developworldwide leadership; (2) generate evidence-based prac-tices; (3) increase country capacity; and (4) implementprograms that are based on principles of equality andequity to reach Millennium Development goal 4.3 TheLancet’s neonatal survival series identified knowledge oflong-term developmental outcomes as a key publichealth gap.4 The Lancet subsequently published a 3-partseries of articles that explored global indicators and bur-den of poor child development,5 risk factors,6 and poten-tial strategies for addressing these problems.7 Thus, theimportance of child development has been increasinglyrecognized in recent years. To promote efficient andeffective progress in the introduction of programs toreduce the burden of childhood neurodevelopmentaldisabilities, we undertook this review to identify gaps inknowledge regarding the epidemiology, screening meth-ods, prevention, service provision, policies, and legisla-tion related to childhood disabilities in LAMI countries.

METHODSWe performed a comprehensive review of available lit-erature to identify data on the prevalence of disabilitiesand impairments in children �5 years old in LAMIcountries. LAMI countries were as defined by the WorldBank (2006)8 on the basis of per-capita gross nationalincome (in US dollars): low income, $875 and lower;lower-middle income, $876 to $3465; higher-middle in-come, $3466 to $10 725; and high income, $10 726 andhigher.

Eligibility CriteriaThe abstract from any study from a LAMI country8 thatdiscussed childhood disability was reviewed for possibleinclusion in the study database. There was no limitationto the year or type of study. This was done to cover asmuch literature as possible from developing countries,keeping in mind that research from developing countriesis limited. Studies unrelated to childhood disabilities orbased in high-income countries8 were excluded. Empha-sis was placed on articles that provided information onresearch that addressed intellectual, hearing, speech, vi-sion, motor, and neurologic impairment in a broadersense; less emphasis was placed on studies that assessed

an intervention for the management of a specific syn-drome (eg, Prader-Willi syndrome, cri-du-chat syn-drome, Down syndrome, etc).

Search StrategyOnline medical databases were searched by using specificsearch strategies. PubMed was searched by combiningthe Medical Subject Heading (MeSH) terms “disabledchildren,” “developing countries,” “mental retardation,”and “sensation disorders.” The search was limited to in-fants, preschool-aged children, and children. Embase wassearched by combining MeSH words “childhood disability,”“sensation disorders,” “sensory disorders,” “mental defi-ciency,” and “developing countries.” PsycInfo was searchedby combining thesaurus words “developmental disabili-ties,” “mental retardation,” and “sense organ disorders”with “developing countries” and limiting it to childhood(0–12 years). The Cochrane Library was also searched forany review on childhood disability with a focus on devel-oping countries.

Initially, the abstracts of all relevant articles thatmatched the search terms were screened to identifyarticles that provided information on childhood disabil-ity related to screening tools, services, prevention andpromotion, legislation, and epidemiology. Electronicand/or hard copies of studies that were found to provideinformation on any of these areas were obtained, and asnowballing hand search was performed of referencelists in relevant articles to identify any other study thatpotentially met our inclusion criteria.

More focus was given to relatively newer studies(conducted after 1990) and those that reported on neu-rocognitive disorders, including motor disabilities. Em-phasis was given to articles that reported overall disabil-ity estimates. No attempt was made to search articlesthat focused on specific syndromes associated with anytype of impairment. Mental disability, per se, was not afocus of this review, although intellectual disability wasreviewed. Although hearing-, speech-, and vision-re-lated disabilities were also included in the search and arereported here, relatively less emphasis was placed onthose disabilities, and some articles related to those dis-abilities were not searched for once electronic and hardcopies were found to be unavailable.

Data ManagementEach full article was further screened to judge its rele-vance to the study objectives. Quantitative informationpertaining to disability screening tools, services, preven-tion and promotion, legislation, and epidemiology wereentered into an electronic database. The income group ofthe country in which the study was based was deter-mined according to the current World Bank incomegroups.8 A fifth group of multicountry studies was iden-tified that included �1 LAMI country. The researchmethod used by each study was coded: cross-sectional

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studies were coded as 1, case-control studies as 2, cohortstudies as 3, randomized, controlled trials (RCTs) as 4,and review articles that did not contain original data as5. The review articles spanned comprehensive reviewsand brief commentaries about certain aspects of child-hood disability in a country. The study settings were alsocoded: community-based studies were coded as 1, clinic-based studies as 2, and special-population– or special-school–based studies as 3. When studies used a combi-nation of study settings/populations, for the sake ofquantitative analysis the higher setting (lower number)was chosen, provided subjects with disability (not con-trols) were drawn from that setting (eg, a study usingboth community-based [code 1] and clinic-based [code2] samples was coded as community based). The ratio-nale for doing this was that the study population wasmore inclusive in community-based studies comparedwith that of clinic-based studies, which in turn was moreinclusive than that of special-population and specialschools. Parameters for screening tools and/or tests usedfor screening, services, prevention and promotion, leg-islation, and epidemiology were each coded dichoto-mously as yes or no depending on whether the focus ofthe study was related to any of these topics. A meremention of the topic in the discussion section was notconsidered as being a focus of the study.

Epidemiologic estimates of total disability and disabil-ity of neurologic, intellectual, hearing, visual, speech,and motor function were noted. Qualitative informationon sampling method, use of standardized tools, discus-sion of bias and confounding, use of appropriate statis-tical analysis including provision of confidence intervals,and discussion of power/sample-size calculations wasalso entered into the database. Because the aim of thisstudy was to identify potential gaps in information fromLAMI countries, a rigorous qualitative assessment ofeach study on the basis of established guidelines was notperformed while selecting them. The objective was to beless stringent on study quality as part of inclusion criteriaand gather more information on the variety of contentand range of quality of knowledge available about child-hood disability in LAMI countries. A brief synopsis of thestudies was included under the areas of focus covered bythe article.

Data AnalysisThe frequency distribution of quantitative data, exceptthe epidemiologic estimates, was tabulated by usingStata 9.9

RESULTSThe results section is presented under the headings“Search Profile,” “Study Setting,” “Research MethodUsed in Studies Reviewed,” “Screening Method,” “Dis-ability-Related Services,” “Prevention and Promotion,”“Legislation,” and “Epidemiology.” Some larger sections

(eg, “Research Method Used in Studies Reviewed” and“Epidemiology”) are further subdivided and discussedseparately under each subsection. Community-based ep-idemiologic studies are further subdivided according tothe types of disabilities addressed by the studies, giventhe importance of community-based epidemiologic re-search for large-scale programs. Both quality of the re-search and important observations made by differentresearchers are highlighted under each section, with anaim at placing the results in the context of the quality ofthe evidence available.

Search ProfileThe search strategy is outlined in Fig 1. No reviews wereidentified in the Cochrane database that fulfilled ourspecific inclusion criteria of studies conducted in devel-oping countries. The PubMed database search resulted inthe identification of 148 articles, of which 75 were ini-tially thought to be relevant after examination of theabstracts, and 47 were found to fulfill eligibility criteriaafter review of the full article. The Embase search re-sulted in 172 articles, of which 25 were initially identi-fied on the basis of their abstract, and 16 were eventuallyselected after reading the whole article. Of the 4 articlesidentified in the PsycInfo database, 3 were found to berelevant to our review after close scrutiny. There wassubstantial overlap among the 3 databases. Hard copy of1 probable article could not be located.10 Another studyfrom the Dominican Republic was not included becauseit was in Spanish.11 Overall, these databases generated 66articles, and another 14 were included on the basis of a

FIGURE 1Flowchart of search strategy.


hand search of the reference lists of each of the articles,which resulted in a total of 80 articles identified forin-depth analysis.

The quantitative and qualitative data are summarizedin Tables 1–6 and Appendices 1 and 2. Key points aresummarized under each relevant subsection outlinedbelow.

Study SettingAlthough the review focused on LAMI countries andthus excluded studies performed in high-income coun-tries, 2 studies from Bahrain and 1 from Saudi Arabiawere included because they were older studies that wereconducted when neither of these countries was classifiedas high income. Overall, 41 (51%) studies were fromlow-income countries and 22 (28%) were from middle-income countries. Another 14 (18%) were multicountrystudies that involved 1 or more LAMI countries. Amongindividual countries, the largest numbers of studies werefrom India (n � 12), Bangladesh (n � 7), China (n � 6),Jamaica (n � 5), Pakistan and South Africa (n � 4 each),and Ethiopia, Kenya, and Nigeria (n � 3 each). Although16% of the studies were published before 1991, 38%were published after 2000. A little more than half of allthe studies from low-income countries were publishedafter 2000. The overall trend has been to shift from moresimple study designs that assess community- and clinic-based prevalence rates to conduct RCTs to study differ-ent interventions. However, there does not seem to be amajor change in either the quality of studies or the areaof focus over the study periods.

Research Methods Used in Studies ReviewedTable 1 shows that a cross-sectional design was used in59% of the studies, case-control in 6% of the studies,and cohort and RCT designs in 5% of the studies. Almost58% of all the cross-sectional studies were conducted inlow-income countries, and approximately one third wasconducted in middle-income countries. More than 77%of the studies were community based and used subjectswho were chosen from either the population or generalschools. More than 45% of the 62 community-basedstudies were from low-income countries. Clinic-basedstudies accounted for 10% of the studies, and �13% ofthe studies used subjects who had a specific disabilityand selected them from specialty clinics or schools.

Cross-sectional StudiesAmong the 47 cross-sectional studies, 36 were commu-nity based. Study populations of children were identifiedeither through population-based sampling12–25 orschools.26–33 Some studies focused on the parents of chil-dren with disabilities and tried to assess their needs andattitudes with respect to disability.34–36 Among the oth-ers, 3 studies37–39 were clinic based, with a primary focuson the epidemiology and available services for cerebralpalsy. One group of investigators40 used participantsfrom clinics and special institutions, and a control groupof normal children, to assess maternal risk factors fordisability. All 6 of the special-population– or special-school–based studies had an epidemiologic focus on theprevalence, type, and severity of disabilities in the studypopulation,41 causes of cerebral palsy,42 validation oftools,43 or effect on caregivers.16,44 Most of the studies

TABLE 1 Proportion of Studies Based on Study Characteristics in Different Income Groups (N � 80)

Study Characteristics n (%)a Type of Country

LowIncome, %

Lower-MiddleIncome, %

Higher-MiddleIncome, %

High Income,%

MultipleDeveloping, %

Research method usedCross-sectional 47 (58.8) 57.5 21.3 10.6 4.3 6.4Case control 5 (6.3) 40.0 40.0 0.0 20.0 0.0Cohort 4 (5.0) 100.0 0.0 0.0 0.0 0.0RCT 4 (5.0) 100.0 0.0 0.0 0.0 0.0Review 20 (25.0) 20.0 25.0 0.0 0.0 55.0

Study population sampledCommunity based 62 (77.5) 45.2 25.8 6.5 1.6 21.0Clinic based 8 (10.0) 75.0 0.0 12.5 0.0 12.5Special-population/special-schoolbased

10 (12.5) 70.0 10.0 0.0 20.0 0.0

Discussed screening tool(s)/instrument(s) 53 (66.3) 56.6 20.8 7.8 3.8 11.3Discussed services 32 (40.0) 43.8 31.3 6.3 0.0 18.8Discussed prevention/promotion 21 (26.3) 47.6 14.3 4.8 0.0 33.3Discussed legislation 6 (7.5) 33.3 33.3 0.0 0.0 33.3Study on epidemiology 66 (82.5) 56.1 19.7 7.6 4.6 12.1

Income groups are based on World Bank gross national income/capita: low income indicates $875 or less; lower-middle income, $876 to $3465; higher-middle income, $3466 to $10 725; highincome, $10 726 or more.a Percentages may not add up to 100% because of rounding errors.


used some kind of sampling framework such as consec-utive sampling, randomized sampling, or inclusion of allthose within a delineated population. A process of ran-domization was used in the sampling stage by manyresearchers.* Most used simple random sampling,whereas some studies used a stratified sampling tech-nique based on various criteria such as type and level ofschools27,40 or socioeconomic criteria.20 Only a few stud-ies discussed both bias and confounding.16,18,20,21,27,37,48

Case-Control StudiesAmong the 5 case-control studies, 3 examined etiologicfactors.49–51 Matching was used in some of the case-control studies.46,49–51 One study49 used medical data anda questionnaire prepared for the study to assess theetiology of mild intellectual disability. No physical exam-ination of the children was conducted, and there was nodiscussion of bias or confounders. Another study50 was apopulation-based study that used screening methods,questionnaires, and standardized definitions in additionto matched controls on the basis of certain sociodemo-graphic characteristics. The authors failed to discuss anybias or confounders that may have affected the results.The study focused on perinatal and maternal factorsrelated to intellectual disability. Another community-based study46 examined the effect of multiple early child-hood intervention strategies, including nutritional sup-plementation regimens and neurophysical stimulationon children with stunted growth, used standardizedtools and sound statistical analysis, and discussed poten-tial bias, confounders, and other limitations of the study.

Social integration of children with epilepsy was thearea of focus in a study in rural India.47 The study usedquestionnaires prepared for the research to collect semi-qualitative data on causes for poor social integration ofaffected children and interviewed parents on causes fornonparticipation of their children in social activities. Theinformation was collected across different age groupsand compared against age- and gender-matched con-trols. Nonparticipatory observation of the children intheir societies was also done. The researchers discussedbias, confounding, and other methodologic limitations intheir study and used appropriate statistical analysis.

Cohort StudiesAmong the 4 cohort studies, 3 studied the prevalence ofetiologic factors for disabilities,52–54 and the other as-sessed outcome of cerebral palsy.55 Gustavson53 studiedthe health outcome of children born to a certain cohortof mothers residing in a circumscribed area. The familieswere followed up periodically for 12 years, and healthoutcomes, including neonatal health and mortality,were recorded. The children were examined clinically,and congenital disorders were diagnosed. Izuora54 used

prospective and retrospective clinical data to study etio-logic factors for mental retardation. Both clinical andlaboratory tests were used along with standard tools forassessing cognitive abilities. The study was conductedover a 41⁄2-year period. Bashir et al52 studied the preva-lence of intellectual disability in children. Khan et al55

studied a group of children from a cerebral palsy clinicover a 3-year period and ascertained their health out-comes. Ninety-two consecutive children were enrolledfrom the clinic and assessed clinically for physical prob-lems; the children were assessed psychologically withstandardized tools for different aspects of cognitive andsocial development. A common drawback of each ofthese studies was that none reported on bias, and only 1study discussed confounding.53

Randomized, Controlled TrialsMcConachie et al45 used an RCT design to evaluate theeffect of 3 types of service-delivery strategies for assistingmothers of children with cerebral palsy. Children fromboth rural and urban settings were selected from specialclinics and schools. Although the process of randomiza-tion was not described in detail, the study includedallocation to 3 types of interventions. Participants from arural community were divided into 2 groups: (1) a dis-tance training group in which the parents were taughtabout child development and use of simple tools and aidsto support their children’s development, and (2) a healthadvice group wherein the parents were given simple toysfor their children to play with but no special informationabout child positioning or other techniques. The urbancommunity was also divided into 2 groups: (1) a distancetraining group, as described above, and (2) a mother-child group in which daily living skills were taught to themothers by specially trained therapists. Verbal consent ofthe mother was obtained, and detailed clinical assess-ment was performed by a pediatrician. Statistical analy-sis provided confidence intervals and test statistics. Theauthors discussed the implications of the results but didnot report on any weaknesses of the study design. Twoother RCTs56,57 studied the effect of zinc supplementsgiven to both pregnant women and their infants on levelof intellectual development at 13 months of age. Bothstudies failed to find any significant benefit. On thecontrary, zinc supplements seemed potentially harmful.Russell et al58 studied the effect of specific integratedgroup psychoeducation on families with children withdisabilities. The parents were taught problem-solvingand parenting skills, and they did better compared witha group whose families were not taught problem-solvingskills, although they were also provided with parentingskills.

ReviewsThe review articles were a mixture of studies that dis-cussed various issues related to childhood disabilities,*Refs 20, 25–27, 30, 32, 36, 40, and 45–47.


such as problems in conducting research in developingcountries,59–61 screening methods,62,63 risk factors andprevention strategies, including early childhood strate-gies,64–69 and available services.61,67,70–72 None were sys-tematic reviews or included critical comments about in-dividual articles. The review by McPherson and Swart73

was on hearing impairment and provided an overview ofprevalence of hearing disability in Sub-Saharan Africancountries; they outlined the etiology for disabilities andresearch needs in that area. While describing the epide-miology, the researchers subdivided the Sub-Saharanregion into smaller geographical areas to describe theetiology regionally. The problem of hearing impairmentand the role of nonspecialists, especially in developingcountries, was discussed by other researchers.71 Yousef72

outlined available services in different Arab countries,with a special focus on education. Some reviews61,67–69

discussed various causes for intellectual disability amongchildren in developing countries and provided a frame-work for implementing preventive strategies to reducethe impact.

Screening MethodApproximately two thirds of the studies discussedscreening tools or assessment methods, including clinicalinvestigations, and more than half of those studies wereperformed in low-income countries. A multitude ofscreening tools were used in the studies, but most wererelated to assessing cognitive dysfunction and intellec-tual disability. These screening tools were generally stan-dardized tools or adapted versions of the American As-sociation on Mental Retardation Adaptive BehaviorScale74; the Vineland Adaptive Behavior Scale75; Grif-fith’s Scale of Mental Development76; or the DenverDevelopment Screening Test.77 Assessment of hearingimpairment often included use of the Liverpool FieldAudiometer, whereas visual impairment was assessed byusing Snellen’s chart and E-charts. Some researchersdeveloped questionnaires for their study but providedinadequate information on psychometric properties ofthe instruments.12,25,30,34,36,47 The instruments gatheredinformation on signs and symptoms of various disor-ders25 and qualitative information on a child’s socialintegration into society,47 attitude of families towardtheir disabled children,43,58 hearing ability,30,34 and avail-ability of human resources to provide service for disabledchildren.36 Some of the researchers provided limited in-formation on characteristics of the questionnaires andalso compared them to more standard tools.30,34,36 Little isknown about the development of the questionnairesexcept for the Indonesian adaptation of the VinelandAdaptive Behavior Scale78 and the scale to measure so-cial integration of children with epilepsy in the Indiancontext.47

Table 2 outlines the screening tools that were eithervalidated or adapted by different researchers. Couper79

modified the Ten Questionnaire (TQ) and added 6 addi-tional questions to identify developmental impairmentsin children below 2 years of age. They piloted theirquestionnaire before using it, but no proper reliability orvalidity study was performed. The TQ, developed as apart of the International Pilot Study of Severe ChildhoodDisability,80 was the most commonly used tool to assessdisability in large populations.24 It was found to havegood specificity for identifying severe forms of mentalretardation in the study by Belmont80; however, in an-other study,15 it was not found to be a suitable screeningtool for mild-to-moderate degrees of mental retardation.A detailed assessment of the tool was performed byThorburn et al,48 who found that the TQ was a good toolfor assessing severe disabilities of all types except cogni-tive disabilities and tended to miss moderate degrees ofintellectual impairment. However, they inferred that theTQ identified more severe cases but was limited by itbeing just a screening tool that provided little informa-tion on the degree of impairment and the type of ser-vices required. Thus, in most settings, the TQ needs to besupplemented by another, more detailed assessment,including 1 or more disability-specific tools to capture abroader range of disorders and to help identify the de-gree of impairment.

Some other tools were also developed through qual-itative research and aimed to measure parents’ attitudestoward their children or the level of social integration ofchildren with epilepsy into an Indian society.43,47 Thefocus of researchers in the area of hearing impairmentwas to develop a tool that allowed for measurement ofhearing loss in a community setup that did not havestandardized ambient noise levels or full cooperation ofthe children. Some of the methods that were founduseful were conditioned-play audiometry and otoacous-tic emissions/tympanometry13 and the voice test.33 Al-though the otoacoustic emissions/tympanometryshowed some promise in a developing-country setup,both methods required additional testing and refine-ments to enable the researchers to measure hearing lossmore accurately across different levels of hearing impair-ment. Other researchers30,34 developed questionnairesthat could be used in the community to identify hearingloss, but these instruments needed to be refined. Simi-larly, it was found that the E-test was a simple tool foridentifying vision impairment in �32 developing coun-tries.81

Disability-Related ServicesForty percent of studies provided some information ondisability-related services, and of these, �44% werefrom low-income countries and 38% were from middle-income countries. Some country-specific details aboutservices and needs are provided in Table 3.

Overall, there was a lack of quality research in theseareas, and only 4 studies conducted RCTs to evaluate


specific interventions. McConachie et al37,45 found thatdistance training packages along with mother-childgroups were beneficial in improving maternal knowl-edge about disability-related services, reducing maternalstress, and improving interaction with their children.

However, distance training packages had some problemswith regard to accessibility; mothers staying away fromthe centers cited difficulty in accessing services becauseof the cost of travel. Some of the common factors thataffected use of disability-related services were distance,

TABLE 2 Research on Screening-Tool Validation and/or Adaptation

Article Country Screening Tool Key Observations Regarding the Screening Tool

Hearing impairmentBerg et al13 Bangladesh Conditioned-play audiometry and

OAE/tympanometryAlthough conditioned-play audiometry was a useful screening toolamong the older children (aged 6–9 y), OAE/tympanometry wasespecially useful for identifying hearing impairment amongthose in the younger group (2–5 y), where full cooperation wasnot required; it was also beneficial as a second-stage screeningtool for the older children; the test-retest reliability � coefficientof OAE/tympanometry was 0.95; however, it did not measurehearing ability per se and only measured other functions relatedto hearing

Gomes and Lichtig34 Brazil Parent-report questionnaire used bynonprofessionals to assesshearing loss

Of 33 questions in the questionnaire, 14 had a significantconcordance rate between community workers and theresearcher; however, the questionnaire failed to distinguishbetween those who failed the audiological test and those whodid not

Newton et al30 Kenya Questionnaire designed to collectinformation on children’sbehavioral response to soundand communication ability andcauses of hearing impairment

The questionnaire was completed by teachers, community nurses,parents, and caregivers; the questions assessed bilateral hearingimpairment at 40 dB; validation of the questionnaire was doneby using pure-tone audiometry; sensitivity of the questionnairewas 100% when hearing loss was considered at �40 dB, andspecificity was 75%; the negative predictive value was 100%,but the positive predictive value was only 6.75%

Prescott et al33 South Africa Voice test A 3-level “voice test” was developed, refined, and standardized,and its validity was assessed against a standardized audiometrictest; the specificity of the new test was 95.9% and the sensitivitywas 80% in clinical studies; in the classroom-based study, thespecificity was 97.8% and sensitivity was 83.3%; however, itfailed to detect high-tone or unilateral hearing loss

Visual impairmentKeeffe et al81 Multiple developing

countriesVisual-acuity test card The E test was found to have good sensitivity and specificity (84%–

100%) in studies that were conducted across differentdeveloped and developing countries

Intellectual impairmentSerpell23 Multiple developing

countriesTQ, Child Disability Questionnaire The TQ and Child Disability Questionnaire were used as screening

tools, but it was found that discrepancies existed between thescreening tools and criteria used by clinicians to diagnose severeintellectual disability in the second phase; information wassought from clinicians involved in the project about theirconcepts regarding the definition of severe intellectual disabilitywith the aim of developing a common understanding of theproblem; behavioral domain was important, and consensus wasfound on 5 domains, although variations based oncharacteristics of the clinicians were observed; training, culturalissues, and competence in English played major roles indetermining the criteria by which diagnosis was made by theclinicians

Stein et al24 Multiple developingcountries

TQ The instrument was able to identify mental retardation in thecommunity, although severe mental retardation was identifiedmore accurately than mild mental retardation

Thorburn et al48 Jamaica TQ Although specificity across all disabilities was �85%, sensitivitywas 100% except for severe cognitive disabilities, for which itwas 52% because of false-negative moderate cases

Tombokan-Runtukahu andNitko78

Indonesia Indonesian adaptation of theVineland Adaptive Behavior Scale

The scale was subjected to qualitative and quantitative analysisduring translation, cross-cultural adaptation, fine-tuning, anddata collection; the instrument had comparable psychometricproperties to the original version; however, more research isneeded before using the instrument in larger settings


cost, and disempowerment of women. The efficacy ofteaching problem-solving skills to parents was under-lined in another RCT,58 in which the authors found thatthe parents in the intervention group had a better un-derstanding and attitude toward their children. Somestudies have provided insight into the community-basedservices within certain areas of China and stressed theimportance of developing primary and community-based services and training of personnel.14,61,69,70 Yousef72

provided a historical perspective of education-relatedservices for children with intellectual disability in Arabcountries. The importance of adequate centers and staffto identify genetic causes of disability was highlighted bythe author.17,69 The importance of collaboration betweendifferent professionals working in the area of disabilitiesand involvement of semiprofessionals and family in theprocess of service delivery was emphasized by others.71,82

The role of families was further highlighted in studies inLesotho,35 Jamaica,83 and India.47 The importance ofcommunity services that helped in improving commu-nication and service delivery across different sectors wasalso stressed.84

Three comprehensive reviews,68,85,86 completed over aspan of 10 years, provided similar recommendationssuch as increasing intersectoral collaboration, involve-ment of national and international agencies, developingcommunity-based services, and increasing training ofstaff as some of the steps for improving disability-relatedservices.

Prevention and PromotionInformation about prevention and promotion activitiesin the area of childhood disability was reported by 21(26%) of the 80 studies, 48% of which were from low-income countries. Strategies identified by various re-searchers are outlined in Table 4 and most incorporatedtechniques applicable to early childhood. Some of theprevention and promotion activities outlined in the

studies included improving primary health care63,67; in-creasing immunization coverage to protect against infec-tions such as poliomyelitis and meningitis41,54; imple-menting programs that provide nutritional supplementssuch as vitamin A, iron, and zinc66; promoting effectivehealth education programs that highlight the effect ofcertain genetic factors in causing different types of im-pairments; the importance of hypothyroidism and iodinedeficiencies in causing intellectual impairment53,69,87; in-creasing parental knowledge about available services re-lated to different types of disabilities; and improvingmother-child interaction.68,72 The importance of avoidingiodine deficiency and measures to prevent hypothyroid-ism, especially within the Indian context, has been high-lighted by others.65,87

Two reviews66,68 provided insights into preventive in-terventions. Protein-energy malnutrition and iodine de-ficiency were identified as the most important nutri-tional deficiencies that cause intellectual disability.66

Shah68 found that birth trauma, birth asphyxia, andnutritional deficiencies were the most prevalent causesfor intellectual impairment among south-Asian coun-tries. Provision of skilled care at birth, effective commu-nity-based maternal and child health care services, andadequate nutritional supplementation programs wasfound to be best suited to alleviate this problem.

LegislationOnly 6 studies provided any information on legislationrelated to childhood disability. Two studies from Chi-na14,69 discussed issues such as strengthening laws thatpertain to protection of rights of children with disabili-ties, banning consanguineous marriage, and making im-munization compulsory within a Chinese perspective.Yousef72 highlighted the importance of laws for protect-ing children with intellectual disabilities and developingnational policies for integrated schooling facilities forsuch children. Nair and Radhakrishnan67 discussed gov-

TABLE 2 Continued

Article Country Screening Tool Key Observations Regarding the Screening Tool

Family perceptions aboutdisability

Mutua et al36 Kenya Parents were questioned about 8different physical and humanresources available in thecommunity with a parent-appraisal scale

Different support opportunities such as health, education, friend,husband/wife, religion, acceptance, and employment werescored according to expected use and importance; there was amatch between expectations and importance for health, friend,religion, and acceptance in a community and home; educationand employment were thought to be important but underused

Pal and Chaudhury43 India Scale to measure parentaladjustment toward the child witha disability

A screening tool was validated among mothers of children withepilepsy; the scale was validated in the sample but needed tohave more external validation

Pal et al47 India Questionnaire developed to assesssocial integration

A questionnaire was developed on the basis of nonparticipatoryobservation, by disability workers, of children’s activities andtheir social integration in the villages; the parents reported thereasons for the child not participating in a particular activity

OAE indicates otoacoustic emissions.


ernmental policies regarding implementation of preven-tive measures, especially those that target girls. The im-portance of policies to reduce iodine deficiency in Indiawas outlined by others.65

EpidemiologyEpidemiology was the focus of 82% of the studies. Ofthese, 56% were from low-income countries and 27%

were from middle-income countries. Of the 66 studiesthat reported on epidemiology, 45 were cross-sectional,5 were case-control, 4 were cohort, 4 were RCTs, and 8were reviews.

Research methods and selection of study populationhave been elaborated in earlier sections. Only 8 studiesprovided some information on all the criteria used toassess quality (sampling method, use of standardized

TABLE 3 Key Country-Specific Disability-Related Services and Needs

Country Article Observation on Services

Bangladesh McConachie et al37 There are outreach centers (rural and urban) in which mothers of children with disabilities candrop in for training in parental skills

China Chen and Simeonsson14,Ran et al70,Sonnander andClaesson69, and Tao61

Community-based rehabilitation centers provide shelter, medical examination, food, training inhygiene, skills for daily living, basic education, and vocational training, and employmentopportunities; special education schools are present; plans to integrate disability-reducingmeasures within primary care, increasing public education, increasing training of personnel,improving research, and developing family-oriented services

Ethiopia Kello and Gilbert41 Need to improve primary care and maternal and child health care facilities with the activeinvolvement of the government

Guatemala Replogle111 Need to develop a screening system within the health service and improve referral services andcommunity awareness about disabilities

India Dave et al17, Nair andRadhakrishnan67, andPal et al47

Need to train more staff who are adept at genetic screening and increase awareness in thecommunity about genetic disorders through community-based services; some problems facedby Integrated Child Development Service and Urban Basic Services are inadequate funds andinfrastructure, poorly trained staff, absence of programs for those �3 y of age, lack ofcommunity participation and ownership, and inability to detect cases early in life; some servicesidentified to improve the condition of children with disabilities were (1) development of parent-group meetings and outings to discuss common issues, (2) using drama as a means ofinteracting with students in class, (3) holding different social events for children with disabilities,and (4) interacting with village councils, teachers, and the elderly and involving them indecision-making

Jamaica Thorburn83 Community awareness needs to be improved to correct beliefs about etiology and managementLesotho McConkey et al35,110 The needs identified by parents were involvement of themselves as trainers for future service

providers, increased awareness of rights of their children, better understanding by thecommunity of their children’s problems, and more specialists and community workers; primaryoutcome of the increased awareness in the community had been increased enrollment ofchildren in schools, improved acceptance of the children in daily community activities andsports, identification of income-generating schemes for the affected, ensuring that aninterpreter is available at the clinics to help the parents to communicate with the health staff,and increase in membership

Mauritius Gopal et al84 Identification of hearing impairment by specialists was within acceptable limits, but there was aneed to improve the communication network between specialists and organizations involved indistribution of hearing aids; the role of community workers to improve the network washighlighted

Nigeria and Uganda Hartley and Wirz82 The government’s roles are to increase social awareness, increase intersectoral cooperation, anddevelop community-based services; professionals’ role is to improve cooperation acrossdifferent levels of expertise, both trained and semitrained, increase awareness, and developtraining modules; families should reduce labeling, increase involvement in decision-making,and promote active listening and communication; nongovernmental organizations shouldinvolve families in rehabilitation and decision-making and coordinate their activities with others

Pakistan Gustavson53 Need to improve maternal health care and screening facilities for genetic risks for disabilitiesMultiple developing countries Richmond et al85, Shah68,

Simeonsson86, andWirz and Lichtig71

Improvement of services and financing; services should be coordinated; improved training of staff,both in technical and managerial setups; criteria for good services are community-based andprimary-care–based services, interdisciplinary interaction, uniform distribution of staff acrossrural and urban settings, national and international programs tailored to local needs,development of professional and managerial skills at the local level, development of nationalpolicies based on a prevention strategy, use of expertise from United Nations bodies whereverrequired, and development of programs that are not only cost-effective but also easilymeasurable and evaluated; involvement of family and community in services related tomanagement of disabilities is essential; community-based services are not adequatelydeveloped, and use of nonspecialists is limited; services need to be based on epidemiologicalfindings, cultural and definitional norms as accepted in the country, and presence of properscreening tools


tools, discussion of power/sample size, bias and con-founding, and use of appropriate statistical analysis, in-cluding confidence intervals for estimates).20,21,27,37,48,56–58

Even among these 8 studies, detailed information onsample-size estimation was provided by only 2 researchgroups.56,58 It is possible that the authors of these studieshad performed these calculations but did not reportthem in the articles that were reviewed. Some studiesdiscussed specific issues related to different biases such asselection41,88 and information20,27,37,46,48 bias. These studiesnot only reported possible sources of bias but also dis-cussed the strengths of the studies in their ability toreduce selection bias by randomization of the selectionprocess or by using trained interviewers who appliedstandard instruments and performed reliability checks tocontrol for information bias. Confounding and statisticaladjustment for it using regression or stratification tech-niques were detailed by some researchers.20,21,27,40,46 Hart-ley89 reported extremely high prevalence rates for alltypes of impairments. However, the study failed to pro-vide information on sampling method, bias, confound-ing, and power of the study. Hartley also used a modifiedversion of the TQ that was not properly validated. Allthese drawbacks made it difficult to correlate the highestimates the author obtained with other studies. Therewas wide variation in the sample size of the studies,ranging between 30 and 550 000.

Community-Based StudiesKey information about some of the community-basedepidemiologic studies is provided in Table 5.

Overall DisabilitiesEight studies provided estimates of overall disability

in the community: 0.4%,12 1%,22 1.8%,90 2.7%,14

3.1%,91 6.0%,79 9.4%,92 and 12.7%.20 All 8 studies useda cross-sectional study design.

Al-Ansari12 used a door-to-door household-surveytechnique in Bahrain and administered a questionnaire

that was developed for the study. The questions wereanswered by the head of the household and not corrob-orated by interviewing the affected person. The studyincluded both children and adults; the prevalence ofdisability in male children was 0.4%, and that in femalechildren was 0.3%.

Sauvey et al22 also used a door-to-door survey of arural population in Nepal and asked the respondentsabout the presence of any member in the householdaged �20 years who had a disability. They were alsoasked to name the type of disability. This simple, 2-ques-tion survey gave an overall prevalence of 1%, with themajority (89%) affected by a motor disability.

Using a random, stratified sample of rural householdsin Ethiopia, it was found that there was a 3.1% preva-lence of disability there.91 Chen and Simeonsson,14 intheir study in China, also used a house-to-house surveytechnique, but there was no information provided onthe type of questionnaire used. The study was part of anational study and also provided estimates for specificdisabilities. Intellectual disability had the highest preva-lence at 1.8%.

The studies in Jamaica92 and South Africa,79 used a2-stage screening method, applying a standardized toolsuch as the TQ in the first stage and an evaluationprotocol for those who screened positive in the secondstage. Although Paul et al92 found that intellectual dis-ability had the highest prevalence at 8.1%, Couper79

found that among children with disability, the mostcommon were neurocognitive and hearing disabilities.

Natale et al20 studied a specific population group inIndia that comprised the 2 lowest income strata of thepopulation. The study included children aged 2 to 9years and used an adapted Tamil version of the TQ; thehighest prevalence of disability was among the 2-year-olds (26%) followed by the 7- to 9-year-olds (15%) and3- to 6-year-olds (9%). The authors also found thatdisability prevalence was greater among the lower of the

TABLE 4 Prevention and Promotion Strategies

Primary Level Secondary Level Tertiary Level

Increase immunization coverage Screen for genetic disorders Improve mother-child interaction to encouragebetter bonding and lower negative attitudes

Provide iodine, iron, zinc, and vitamin Asupplementation through nationalprograms

Screen for neonatal hypothyroidism Provide better education and training for children inneed

Develop school-meal programs Identify intellectual and other disabilities inschool and the community

Use different tools to improve hearing impairment

Improve parenting skills through schemessuch as the Portage guide to hometeaching

Increase level of awareness within thecommunity; teachers to identifyimpairments

Improve antenatal and postnatal carethrough programs such as SafeMotherhood

Share information on birth spacing and harmof consanguineous marriage


TABLE 5 Community-Based Epidemiological Studies

Article Country ResearchDesign Screening Tool Epidemiology Prevalenceof All

Disability, %

All disabilitiesal-Ansari12 Bahrain Cross-sectional household

surveyQuestionnaire on thepattern of USHousehold Survey

Approximately 4.5% (2672) of the householdsin Bahrain were sampled using aquestionnaire similar to the US HouseholdSurvey; total populationwas 11 521, ofwhich 5938were children and adolescents(0–19 y); questions were related to typeand cause of disability; the questions wereanswered by the head-of-household, andthe disabled personwas not interviewed;intellectual disability was common, andbirth trauma and infections were commoncauses

0.4

Biritwum et al90 Ghana Cross-sectional study Household-surveyquestionnaire

Children aged 0–15 y (N� 2556) wereincluded in the study; disability variedaccording to age (1–5 y [1.4%], 6–9 y[1.7%], 10–15 y [0.4%]); inadequateimmunization, especially for diseases suchas rubella andmeasles, was 1 of themostcommon causes of disability, and themostcommon typewas hearing and speechproblems, found in 26% of the childrenwith disability

1.8

Chen and Simeonsson14 China Cross-sectionalpopulation-basedsurvey over 29provinces to assessdisability

None The prevalence of any disability was 2.9%(boys) and 2.5% (girls) (N� 12242); thecauses for disability were unknown(47.2%), prenatal causes such as infections,consanguineousmarriage, inheriteddisease, drugs, andmedicines (20.9%),perinatal birth-related complications(2.5%), and postnatal causes such asinfections, malnutrition, tumors, andaccidents (29.3%); among the differenttypes of disabilities, 66% had intellectualdisability

2.7

Couper79 South Africa Cross-sectional study Modified TQ Children�10 y of age (N� 2036) wereincluded and initially screened for any typeof disability using the screeningquestionnaire; thosewho screenedpositive were further assessed by therehabilitation specialists; neurocognitive(4.7%) and speech and hearing (2.0%–2.4%) disabilities were themost prevalent

6.0

Natale et al20 India Cross-sectional study Tamil version of TQ Two groups of families in the lowest 2economic classes were studied to assessprevalence of disability in 2- to 9-y-oldchildren (N� 640); only 1 child per familywas selected; the number of families in the2 social strata were approximatelyequivalent; themean age of the childrenwas 5 y, and�50%were boys; although17.2% of families in the lowest strata had achild with disability, 8.4% in the nextlowest group had a child with disability;disability varied across age groups, and itwas 26% in 2-y-olds, 9% in 3- to 6-y-olds,and 15% in 7- to 9-y-olds;�57% of thedisabled childrenwere boys; only speech-related disability varied significantlybetween the 3 age groups, with thehighest prevalence seen in the 0- to 2-y-old group

12.7


TABLE 5 Continued


Disability, %

Paul et al92 Jamaica Cross-sectional house-to-house survey

TQ Community workers initially screened 2- to9-y-olds (N� 5468) by using the TQ; thosewho screened positive and 8% of thosewho screened negative were furtherassessed by using a protocol developed forthis research; of 193 childrenwithdisabilities, mild disability was prevalent in6.9%,moderate in 1.9%, and severe in0.56%; although 70% had 1 disability,almost 30% had�2 disabilities; amajorityof the causes of disability were unknown;the prevalence of intellectual disability was8.1%

9.4

Sauvey et al22 Nepal Cross-sectional survey ofrural population

None Households over 24 rural developmentcommittees (N� 28376) were asked 2questions about the presence of anyonewith a disability in the household aged�20 y and the type of disability; theinterviewwas supervised by surveyors; halfof the population surveyedwas female;829 children and adolescents wereidentified; among thosewith disability, themale/female ratio was 3:2; the prevalenceacross the different communities variedbetween 0.4% and 6.2%; themostcommon disability wasmotor (89%)followed by speech (22%), vision (13%),hearing (8%), and learning (6%) disability

1.0

Tamrat et al91 Ethiopia Cross-sectional householdassessment

TQ Houses were selected on the basis of randomstratification performed on the basis ofrural or urban setting; although the surveyassessed disability across all age groups,children aged 5–14 y (N� 1628)accounted for�39% of those assessed

3.1

Hearing disabilitiesBastos et al26 Bolivia Cross-sectional study Electronic instrument

to assess hearingSchoolchildren from 1 urban and 1 ruraldistrict were chosen to assess hearingimpairment; 3 urban and 5 rural schoolswere chosen (N� 854); the childrenwerebetween 6 and 16 y old, with about halfbeing boys; bilateral loss was 10.5% inurban schools and 4.7% in rural schools;impairment increasedwith age andwasmore common in urban girls than boys(approximately, girls/boys� 5:3), althoughno differencewas seen in the ruralpopulation; middle-ear infectionwascommon

3.0

Chen and Simeonsson14 China Cross-sectionalpopulation-basedsurvey

None Children from 29 provinces were assessed(N� 12242); half of the cases hadunknown etiology, and other commoncauses were infections, trauma,consanguineousmarriage, congenital, etc

0.4

Gomes and Lichtig34 Brazil Cross-sectional study Parent-reportquestionnaireused by nonpro-fessionals toassess hearing lossand audiometry

Respondents included parents of childrenaged 3–6 y; the childrenwere given anaudiometric assessment (N� 133);conductive deafness of varying intensitieswas themain type of deafness identified

9.0


TABLE 5 Continued


Disability, %

Hartley89 Uganda Cross-sectional study Verbal communi-cation question-naire adaptedfrom the TQ

Among thosewho responded to thequestionnaire (N� 1041), 57%were boys;almost half the childrenwith somedisability had speech problems (49.4%)

19.7

Hatcher et al27 Kenya Cross-sectional study Liverpool fieldaudiometer

Primary-school children from 57 schools wereincluded in the study (N� 5368); ageranged from 5 to 21 y (53%were 10–14 y);besides questions related tosocioeconomic status, the childrenwerephysically examined, and hearingwasassessed by using an audiometer; wax inthe ear was themost common cause(8.6%)

5.6

Kirkpatrick et al28 Nepal Cross-sectional study Liverpool fieldaudiometer

Children from 4 primary schools werescreened (N� 309); the initial screeningwas at 30 dB, and thosewho failed the testwere rescreened at the same frequencylevel as well as at higher frequencies; thosewith confirmed hearing impairment wereexamined clinically

7.0

Lyn et al29 Jamaica Cross-sectional study Tympanometry andpure-toneaudiogram

Children from 27 public and 5 private schoolswere screened; of the 2202 children, 1047were boys; the ages ranged from 5 to 7 y.Initial screeningwas by pure-toneaudiometry and tympanometry, followedby clinical examination for thosewhofailed the first screening; wax in the earwas themost common cause of hearingimpairment

4.9

McPherson and Swart73 Sub-Saharan Africa Review Liverpool fieldaudiometry

Studies involved population-based surveysand school-based surveys; the sample sizesvaried; the prevalence of deafness andsome individual population characteristicsin the different countries were 0.27%(Gambian children aged 2–10 y from ruralpopulation), 13.5% (Nigerianschoolchildren), 0.4% (Sierra Leone,population-based survey of children aged5–15 y), 2.0% (Angolan schoolchildren),3.3% (Zimbabwean schoolchildren), 2.2%(Kenyan schoolchildren), 3.0% (Tanzaniaschoolchildren), 1.0% (schoolchildren inSwaziland), and 7.5%–9.2% (South Africanschoolchildren); themost commonetiologies weremeningitis, measles,maternal rubella, febrile illnesses, geneticcauses, and a large proportion of unknownetiology

0.27–13.5

Newton et al30 Kenya Cross-sectional study Specially designedquestionnaire;pure-toneaudiometry

Nursery grade–aged childrenwho belongedto 6 districts were screened (N� 757); theschools were selected randomly; thequestions assessed bilateral hearingimpairment at 40 dB; the respondentswere school teachers, parents, caregivers,and community nurses atmaternal andchild health clinics; the type of respondentwas randomly selected in each district, andthe parents/caregivers accompanying thechild were questionedwhile attending aclinic; themean age of the childrenwas5.7 y

1.7


TABLE 5 Continued


Disability, %

Olusanya31 Nigeria Cross-sectional study Tympanometry andpure-toneaudiogram

Schoolchildrenwere chosen through aprocess of randomization and evaluatedfor hearing impairment by using screeningtools; ages ranged from 4.5 to 10 y, andthere were 190 girls and 169 boys(N� 359); educational performancewasalso noted; high-frequency hearing losswas common, with otitis media andunconjugated hyperbilirubinemia ascommon causes

8.9

Thorburn et al48 Jamaica Cross-sectional study TQ,medical assess-ment form,psychologicalassessmentprocedure

Initial door-to-door survey using the TQwasfollowed by clinical examination of thepositive cases and a selection of normalcases; community workers gathered data;childrenwere 2–9 y old (N� 5478)

0.4

Intellectual disabilitiesBashir et al52 Pakistan Prospective cohort study Wechsler Intelligence

Scale for Children,Griffith’s MentalDevelopmentScale, TQ

Pregnant womenwere registered at an earlierperiod of time, and baseline data werecollected about them; once their childrenreached 4–6 y of age, theywere includedin the study and intellectual capacity wasascertained (N� 649); the childrenwereevaluated by using standardized tools andby physicians; blood tests were conductedto assessmetabolic causes; the highestprevalence ofmild intellectual disabilitywas in the periurban and urban slum areas

6.2

Chen and Simeonsson14 China Cross-sectional study None 29 provinces were included (N� 12242); thecommon causes for intellectual disabilitywere unknown (42.9%), genetic (13.9%),neurologic infections (7.8%), malnutrition(6.8%), pregnancy-related complications(6.6%), psychosocial factors (4.8%), andbrain trauma (2.3%)

1.8

Christianson et al15 South Africa Cross-sectional study TQ, Griffith’s Scale ofMental Devel-opment, visualand auditoryclinical assess-mentmeasures

The household survey included 2- to 9-y-oldchildren from 8 villages (N� 6692); therewas a 2-phase screening; initial screeninginvolved using the TQ, followed by apediatric assessment using Griffith’s Scaleand other visual and auditory assessments;intellectual disability of a severe typewaspresent in 0.6% andmild type in 2.9%;�60%were boys; although themostcommon cause for intellectual disabilitywas congenital disorders, 60.5%were ofunknown etiology; themost commoncomplications were epilepsy (15.5%),cerebral palsy (8.4%), and auditorydisability (7.1%)

3.6

Dave et al17 India Cross-sectional study Screening tools toassess geneticproblems;instruments tomeasure IQ

A community (N� 550000) was screened,and cases were referred to the geneticcounseling clinic for confirmation; amonggenetic causes, themost commonwereDown syndrome (64%) andmetabolicdisorders (23%); environmental causesincluded pregnancy-related complicationssuch as infections (9.0%), low birth weight(8.6%), and birth asphyxia (8.4%);consanguineousmarriagewas common

0.09


TABLE 5 Continued


Disability, %

Durkin et al18 Pakistan Cross-sectional study TQ, Stanford BinetIntelligence Test

A 2-phase cluster sampling of houses wasperformed, and all children between 2 and9 y oldwithin the selected communitywere included (N� 6365); a little over halfwere boys; more than half of thosewithserious impairment had other disabilitiestoo; a higher prevalencewas seen in thosein a rural population, withmothers havingless education, from consanguineousmarriage, with history of goiter inmotheror child, with poor antenatal and postnatalcare, with low immunization, andwithperinatal complications such as injuriesand infections

3.6

Gustavson53 Pakistan 12-y cohort study None All pregnant womenwithin a specified periodand residing in 4 selected urban and ruralslum areas weremonitored from their 5thmonth of pregnancy; the childrenwereclosely followed up from birth until the ageof 12 y (N� 1476); the childrenwereexamined every thirdmonth up to the ageof 6 y and subsequently twice per yearuntil the age of 12 y by pediatricians,psychologists, and social workers;prevalence ofmildmental retardationwas6.2%, and that of severemental retardationwas 1.1%; serious birth defects werepresent in 5.6%, themost common beingneural tube defects; psychomotordevelopment wasmore delayed amongthe poor (mean time towalk: 15mo)compared to the rich (mean time towalk:12mo); prenatal and postnatal factorsaccounted for 50% of the causes ofmildmental retardation

2.8

Hartley89 Uganda Cross-sectional study Modified TQ Among thosewho responded to thequestionnaire, 57%were boys; within eachtype of disability, verbal communicationwas affected; overall, almost half of thechildren had some form of problem (N�1041)

18.3

Qi-hua et al50 China Matched case control Denver Develop-ment ScreeningTool, Good-enough’s Draw aPicture test,Gesell’s Develop-mental Test,Weschler Intelli-gence Scale forChildren-Revised

Children (�14 y) who lived in an urban areawere included in the study (N� 7150);�50%were boys; thosewho screenedpositive on the screening tools wereclinically assessed; the prevalenceincreasedwith age, reaching a peak of1.1% in the 10- to 14-y-old group; therewere no gender differences; of theidentified cases, mild cases weremostcommon (62.5%), followed bymoderate(28.6%) and severe (8.9%); the prevalencewas higher in the poor, thosewith parentswith lower education, thosewith familyhistory of alcoholism, thosewith increasedage of themother, and thosewith aprevious history of a child withmentalretardation; 4 age/gender/residential-area–matched controls were selected foreach case, and the risk factors wereassessed; perinatal factors such asmaternal

0.8


TABLE 5 Continued


Disability, %

viral infection, low birth weight, birthasphyxia, use of drugs, past history ofseizures after birth, brain injury,malnutrition, and deficient preschooleducationwere some of the commonfactors with�4 times higher relative risksasphyxia, use of drugs, past history ofseizures after birth, brain injury,malnutrition, and deficient preschooleducationwere some of the commonfactors with�4 times higher relative risks

Stein et al24 Multiple developingcountries

2-stagemulticountrycross-sectional survey

TQ A 2-stage survey was used to assess the ratesof disability in 10 different countries (N�8557); age of the children ranged from 3 to9 y; initial door-to-door survey using TQswas followed by clinical assessment ofpositive cases; rates for severementalretardation varied from 5 in 1000 in thePhilippines to 40.3 in 1000 in India; otherrates were 16.2 in 1000 (Bangladesh), 5.2 in1000 (Sri Lanka), 11.2 in 1000 (Malaysia),15.1 in 1000 (Pakistan), 6.7 in 1000 (Brazil),and 5.3 in 1000 (Zambia); the prevalencesofmildmental retardationwere 138 in1000 (Bangladesh), 61 in 1000 (Brazil), 18 in1000 (India), 9 in 1000 (Malaysia), 21 in1000 (Pakistan), 4 in 1000 (Philippines), 7 in1000 (Sri Lanka), and 30 in 1000 (Zambia);in Malaysia, themost common reason forintellectual disability was perinatal factors;in Pakistan, themost commonweregenetic and prenatal causes; bothmildand severemental retardationwasmorecommon in boys; severementalretardationwasmore common among thepoor, and consanguinity was amajorcause; movement disorders, sensorydeficits, and seizures weremost common;mildmental retardationwas often notrecognized by themother

0.5–4.0

Tekle-Haimanot et al25 Ethiopia Cross-sectional survey Questionnaires onsocioeconomicstatus, generalmedical,psychiatric, andneurologicdisorders

The study involved a door-to-door survey of�60000 rural and urban populations(�35000 children aged 0–19 y) in Bujatira;lay interviewers from the villages weretrained; amedical officer was also trainedin neurology; initial screening led toidentification of persons with physical ormental disabilities; trainedmedical officersreinterviewed some subjects for validation;thosewith probable neurologic problemswere screened further by using a detailedneurologic questionnaire and clinicalexamination and provided treatment, ifrequired; severemental retardation variedacross age groups (0.17% [0–4 y], 0.18%[5–9 y], and 0.31% [10–14 y]);consanguinity was associatedwith higherrates of all problems

0.2

Thorburn et al48 Jamaica Cross-sectional study TQ,medicalassessment form,psychologicalassessmentprocedure

Initial door-to-door survey using the TQwasfollowed by clinical examination of thepositive cases and a selection of normalcases; community workers gathered data;childrenwere 2–9 y old (N� 5478)

1.7


2 strata. They commented that the higher estimates intheir study were most likely a result of inadequate val-idation of their instrument.

In Ghana, researchers90 found that in their sample ofchildren (�15 years), the overall disability rate was1.8% and disability was highest among the 6- to 9-year-old group. Inadequate immunization, especially againstmeasles, meningitis, rubella, and poliomyelitis, were im-portant causes for disability. Reviews59,85 highlighted theimportance of epidemiologic issues such as standard def-initions, information on different childhood morbidityand mortality indicators, and different risk factors fordisability in LAMI countries.

Hearing DisabilitiesAmong studies that used a cross-sectional design,

hearing impairment was the most frequently studieddisability; prevalence estimates ranged from 0.4%14,48 to19.7%.89 Higher prevalence rates were generally ob-tained in studies on schoolchildren compared with non–school-based community studies except for the study byHartley,89 which suffered from poor method and failed tocontrol for bias and confounders and used a nonvali-dated adaptation of the TQ. In a review on hearingimpairment in Sub-Saharan African countries,73 it wasfound that prevalence rates varied across countries from0.3% in rural Gambian children to 13.5% amongschoolchildren in Nigeria. The sample sizes varied acrosscountries. The authors found that the most commonetiologies were meningitis, measles, maternal rubella,febrile illnesses, and genetic causes; there was a largeproportion of unknown etiology. The need for moreepidemiologic studies, especially community-based sur-veys, studies on cultural healing practices, use of system-atic research methods, standard definitions to definehearing impairment, and use of good instruments toassess hearing loss, was emphasized.

Intellectual DisabilitiesThe prevalence of intellectual disability varied from

0.09%17 to 18.3%.89 The large variation could be a resultof sampling framework, degree to which confoundersand biases were accounted for in the study, and use ofreliable and valid tools. A multicountry, 2-stage studydesign that included the TQ24 found that prevalence ofintellectual disability varied according to severity acrosscountries. For severe mental retardation, the rates variedfrom 5 in 1000 in the Philippines to 40.3 in 1000 inIndia; and for mild mental retardation, prevalence variedfrom 4 in 1000 in the Philippines to 138 in 1000 inBangladesh. Among community-based studies, 1 case-control study50 reported an intellectual disability rate of0.8%, with 62.5% of the cases falling in the mild area ofthe spectrum. Cohort studies52,53 reported intellectualdisability to have a prevalence of 2.8%, with mild men-tal retardation having a prevalence of 6.2% and severemental retardation a prevalence of 1.1%. Although half

of the mild cases had unknown etiology, 28% were aresult of postnatal causes and the remaining resultedfrom prenatal causes. The most common causes for se-vere mental retardation were congenital problems suchas Down syndrome, consanguineous marriage, and birthtrauma. Shah68 reviewed intellectual disabilities in 5south-Asian countries and reported a prevalence be-tween 0.5% and 1.5%. The most common causes werebirth asphyxia and trauma, intrauterine growth retarda-tion, infection, malnutrition, iodine deficiency, iron de-ficiency, neonatal jaundice, genetic disorders, and met-abolic disorders. The neonatal period was extremelyvulnerable. Another review69 reported intellectual dis-ability in �2% of the Chinese population, with a slightlyhigher male predominance. Iodine deficiency, especiallyin the hilly regions, was found to be prevalent. Tao61 alsoreviewed intellectual disability in China and reported aprevalence of mental retardation between 0.1% and0.8%, with higher prevalence in rural areas. Perinatalfactors associated with birth trauma, congenital factors,and maternal infections were some of the factors theyidentified as being associated with intellectual disability.

Visual DisabilitiesVisual impairment varied between 0.1%14 and

12.5%.89 An Indian study21 found a prevalence of 9.2%and used a vision-specific LV Prasad Functional VisionQuestionnaire in contrast to a more generic question-naire such as the TQ used by others.48,92 A 2-stage designwith an initial assessment by a trained communityworker and a confirmatory assessment by a specialistwas a method often used in studies that reported visualimpairment.

Motor DisabilitiesMotor disability was reported by 5 studies.14,25,48,89,92

The rates generally varied between 0.1%48 and 0.4%92

except for 1 study,89 which reported a rate of 62.2%. Allthe studies except the study by Chen and Simeonsson14

used a 2-stage design.

Speech DisabilitiesSpeech or neurologic disabilities were reported in

only a few studies. Two were based on the same studypopulation in Jamaica.48,92 The others were performed inUganda,89 South Africa,79 and Ghana.90 The rates re-ported in the studies from Jamaica were 0.2% for neu-rologic disorders and 1.4% for speech disability. Hart-ley89 reported a verbal communication problem in49.4% of the population. However, the criteria for de-fining verbal communication problems were not clear.The study from South Africa79 reported neurologic dis-ability in 4.7% of the population and included bothepilepsy and perceptual problems other than vision andhearing. They also reported speech problems in 2.4% ofthe population. They confirmed impairment levels on


the basis of assessments made by specialists on thosewho screened positive.

Clinic-Based StudiesOne old study from east Africa examined intellectualand speech disability, but it was of poor quality.93 Morerecently, 4 studies focused on children with cerebralpalsy.37–39,45 Two studies38,39 found that spastic diplegiawas the most common type of cerebral palsy. Associatedvisual defect was present in 54% of the children assessedby Bhatia and Joseph,39 but the parents were unaware ofthe problem. In an RCT and a follow-up study, McCo-nachie et al37,45 evaluated 3 different types of service-related interventions for improving the condition ofsuch children in rural and urban settings. Both thesestudies are discussed earlier in this article. Follow-up wasfound to be affected primarily by 2 factors: male genderof the child and the parents being less adapted to theirchildren’s condition. Higher level of education and beingfrom an urban community also predicted better out-come. The RCT showed that the mother-child group,which provided the most intensive package, benefitedthe most, but outreach interventions were also effective.One study47 divided 88 children with epilepsy into 5groups and compared them with controls to look forsocial integration. School attendance and social interac-tion were more severely impaired among girls, and themost common determinants of integration of these chil-dren were societal and parental attitudes. A cohortstudy54 was conducted over a 4-year period and foundthat the most common causes were acquired (44%),congenital (33%), and idiopathic (23%). Although themost common congenital cause was Down syndrome,the most common acquired causes were birth traumaand neonatal jaundice (19.5%). Some of the early child-hood preventive strategies highlighted in the authors’discussion were immunization, chromosomal screeningduring the antenatal period, prevention of malnutrition,and better antenatal care.

Special-Population or Special-School–Based StudiesTwo of the special-population–based studies were ofchildren with cerebral palsy.42,55 Both studies had ahigher number of boys. Spastic diplegia and quadriplegiawere the most common types of cerebral palsy. Adverseoutcomes (eg, malnutrition in children suffering fromcerebral palsy) were common. In the 3-year cohortstudy55 in Bangladesh, 93% of the children were suffer-ing from malnutrition per Western standards, with morethan double the rate among rural compared with urbanchildren. The case fatality rate was 4% among urbanchildren and 14% among rural children with cerebralpalsy. The other study42 found that more than half of thechildren in the study cohort in India were suffering frommalnutrition. The authors also found that although in-tellectual disability was the most common disability and

affected 73% of the 1000 children assessed in the study,visual impairment affected 41% and epilepsy 32% of thechildren. Another study40 included children with 3 typesof impairment (visual, auditory, and intellectual) in ad-dition to a normal cohort. They studied the maternal riskfactors associated with disability and found that mater-nal age of �16 or �30 years and multiparity were someof the maternal risks associated with the different im-pairments. Illiteracy, unemployment, and consanguinitywere other associated factors. The authors of a case-control study49 found that prenatal causes were respon-sible for 39% of the cases of mild mental retardation,and consanguinity, illiteracy, and family history of men-tal retardation were associated risk factors. A case-con-trol design was used to assess the etiology of cerebralpalsy, mental retardation, and visual and hearing im-pairment in an Afghan clinic.51 High rates of consanguin-ity and lack of universal and comprehensive antenatalcare resulting from lack of accessibility, inadequate ser-vices, and illiteracy were some of the underlying causesof the impairments.

Four studies looked at the impact of children withdisabilities on the family.16,43,44,58 All but 1 of the studies58

used a cross-sectional design and interviewed parents ofchildren with disabilities regarding the effect on themboth psychologically and financially. Negative attitudestoward their children, high expressed emotion, and con-cern regarding the effect of the child’s illness on theoverall functioning of the family were found in 2 stud-ies.16,43 All the studies showed that parents wanted moreinformation regarding available professional services, jobopportunities, education, and financial support. Anotherstudy41 found that vitamin A deficiency and measleswere the most common causes of blindness in 50% ofthe children in a school for the blind. Avoidable causeswere identified in 68% of the cases.

DISCUSSIONThis study is, to our knowledge, the first attempt toreview research on childhood disability from LAMIcountries. The aim of the study was to identify the gapsin knowledge that could be addressed by future research.

Overall, the results show that researchers in LAMIcountries have primarily focused on the epidemiology ofchildhood disability using cross-sectional community-based studies. Few studies used robust RCT designs,there is much variation in the tools used to study theproblems, and few researchers have addressed issuessuch as confounding, bias, sample size, and use of ap-propriate statistics. Thus, if one were to apply criticalmeasures of quality, many of the studies would not liveup to acceptable standards of evidence-based scientificresearch. We were able to identify potential areas offuture research, especially in the areas of prevention andpromotion, services, and legislation in addition to theneed for more robust studies on epidemiology.


Although every effort was made to conduct a searchusing a broad search strategy to identify all relevantresearch, ours was not a systematic review; hence, thescope of the search had limitations. Thus, it is possiblethat some pertinent studies may not have been includedin this review, although the initial search results weresupplemented by additional reports gleaned from thereferences of each article. Including only studies in theEnglish language implies that any non–English-languagepublications have been missed, although they were in-cluded if an abstract was available in English. This alsomeans that this review identified literature from coun-tries that disseminate scientific research primarily in En-glish; thus, the countries listed in this review may reflectthat bias. Also, a number of articles related to specificsyndromes might have been missed by not searchingfor them because it was not within our scope of re-search. The disability-causing conditions examined inthis study included neurologic, intellectual, hearing, vi-sual, speech, and motor disabilities. However, there areother conditions that could be included such as severemental disorders and severe neurologic disorders. Futureresearch could use a broader definition and include spe-cific disability-producing conditions and syndromes (eg,Down syndrome) that are not addressed in this review;however, it is likely that our search strategy capturedmuch of this literature from LAMI countries. Because anumber of severe neurologic disorders also lead to in-creased mortality, a future review that addresses such anoutcome is also possible. The definitions of disabilityused by different researchers also vary and made it dif-ficult to compare the results across studies. Although thestudies were reviewed critically, no predefined qualitycriteria were used to include or exclude studies, becausethe aim of the study was to identify gaps in knowledge;thus, the broadest possible lens for study inclusion wasmaintained. Future studies can build on our review byexpanding the scope and making it more stringent withregards to quality of studies; however, we felt it wasimportant at this stage in the genesis of evidence-basedapproaches to child development in LAMI countries totake a more inclusive approach. Finally, the statisticalanalyses were purely descriptive, and no attempt wasmade to report pooled estimates because of the hugevariation in the methods used in the studies. Only rangesof different epidemiologic estimates are provided.

Need for Research in Childhood Disability in LAMI CountriesIn 1990 the United Nations published a document thatoutlined the different methods to collect data on disabil-ities across countries, prompted by a review of existingliterature at that time.94 The need for such a documentwas determined after reviewing existing research at thattime. The United Nations study also found that disabilityestimates varied between 0.2% and 20.9%. Since then,the World Health Organization (WHO) has taken major

steps in defining disabilities and developing tools to as-sess the level of disability as part of its disability-relatedwork. A recent concept article95 by the WHO on disabil-ity and rehabilitation reported that there are an esti-mated 600 million disabled individuals in the world, ofwhom 200 million are children. Poverty was the majordeterminant of disability, which was most common inLAMI countries. Acknowledging the gravity of the situ-ation, the 58th World Health Assembly96 came up with aresolution that urged member states to develop theirknowledge base about disability, implement evidence-based programs for rehabilitation, and formulate policiesand legislation to strengthen the rights of individualswho are living with disabilities. Although some knowl-edge is available about disability-related issues amongadults, the same is not true for childhood disability,especially within LAMI countries, in which both knowl-edge and activities directed toward childhood disabilitiesare severely limited.

Table 6 highlights some of the gaps in knowledgeidentified through this review and suggests some recom-mendations for future endeavors. Often, the recommen-dations to overcome potential gaps in knowledge aresimilar across different problem areas. The discussionbelow outlines some of those gaps and suggests mea-sures to overcome those gaps. The intent is not to beprescriptive but to provide recommendations across dif-ferent problem areas in an overarching manner withoutbeing too specific and repetitive.

Special Need for Research Related to the Neonatal PeriodInformation available from both developed and devel-oping countries point to the special importance of theneonatal period for future growth and development ofthe child. Researchers have identified various etiologicconditions, such as birth asphyxia, meningitis, jaundice,hypothyroidism, prematurity, etc, which are particularlyrelevant to future disabilities and are of utmost im-portance during the neonatal period. Appendices 1 and2 provide details about such research from LAMI coun-tries. A number of preventive strategies highlightedin Table 4 are especially relevant to the neonatal pe-riod, including screening for genetic disorders and neo-natal hypothyroidism, immunization, nutritional sup-plements, and appropriate antenatal and postnatal care.However, information about long-term cognitive andother impairments of children with neonatal high-riskconditions is particularly lacking from LAMI countries;hence, more research is needed to generate such knowl-edge. Because most of the neonatal high-risk conditionscan be avoided or minimized by providing appropriatematernal and child health services, it makes sense forpolicy makers to focus on strategies that are needed intheir countries to reduce neonatal risk factors. Besidesthis, policy makers should also encourage programs that


TABLE 6 Key Findings of the Review and Recommendations

Area of Research Available Information and Gaps in Knowledge Recommendations

Type of disability Some information on intellectual and hearing disabilitiesis available, but little is known of other types ofdisabilities

More research needs to be conducted to gather and disseminateinformation about different types of childhood disability andthe long-term consequences of morbidities that stem fromdelivery complications and neonatal and early childhoodillness; national and international collaborations should beforged to use the available knowledge base and limitedbudget in the most effective manner

Regional variation More information about disabilities is available fromsome specific countries such as India, China,Bangladesh, Pakistan, Nigeria, and South Africa, butlittle is known from other countries

Other countries besides those mentioned should generate moreresearch to have a better understanding of regionaldifferences, if any

Assessment of disability The TQ seems to be the most widely used screening toolused in community-based studies; studies on hearingimpairment have often used the Liverpool FieldAudiometer; different instruments have been used toassess intellectual disability

The TQ is a screening tool and a more comprehensiveinstrument that can assess different types of disabilities, andrelated covariates need to be developed; new instruments,while being comprehensive should also be easy to administerin a community setting; instruments to assess different typesof disabilities accurately need to be developed and validatedacross cultures; more instruments should be generated toscreen disabilities among children �3 y old

EpidemiologyResearch design Majority are cross-sectional studies using community- or

school-based study populations; fewer numbers ofmore sophisticated designs such as case-control andcohort studies or RCTs have been conducted

More sophisticated studies should be conducted to have betterunderstanding of the problem of childhood disability; studiesshould also maintain stringent methods to account for biasesand confounders and use appropriate statistical analyses

Descriptiveepidemiology

Some information about prevalence of intellectual andhearing disabilities in different study populations isavailable, but little information is known about othertypes of disabilities; no information is available onincidences

Although studies on intellectual and hearing disabilities need toimprove, studies on other disabilities need to be conductedmore frequently; cohort studies that report on incidencesshould be conducted; particular attention is needed onoutcomes of delivery complications and early illnesses, suchas birth asphyxia and serious neonatal infections, as well aspreterm birth

Analyticalepidemiology

Information about severity of disability across differentage groups is not available, although someinformation about age distribution is available;although some information about risk factors isavailable, causal inferences cannot be made, becausemost studies are cross-sectional; few longitudinalstudies are available that have ascertaineddevelopment issues and disability, and all seem to bein the area of intellectual disability

More focus should be given to address severity of disabilitiesacross different age groups to develop better services; morecohort studies should be conducted to understand causality(eg, antenatal, intrapartum, and early postnatal risk factors);more longitudinal studies are needed to study developmentalissues and ascertain problems faced by these children overdifferent time periods and for different forms of impairments

Prevention andpromotion

Some information is available about interventions in thearea of intellectual and hearing disability, comparedto other disabilities, but it is inadequate; only ahandful of RCTs have been performed to studydifferent prevention methods; because of the paucityof appropriate intervention strategies, there are nostudies on economic evaluation; what little is knownabout interventions is limited to countries in Asia;almost nothing is known about community-basedinterventions that have public health implications

While continuing research in the areas of intellectual and hearingdisabilities, researchers should also study other disabilities; todevelop good prevention and promotion strategies, moreRCTs need to be conducted; authors of future studies onintervention should try to build economic evaluation intotheir study framework; more studies on different interventionsneed to be conducted across different countries; once moreeffective interventions are identified, they should be taken toscale and implemented within larger communities andevaluated for effectiveness

Services Little is known about available services for children withdisabilities, both within the community and in thearea of special education and training; almost noinformation is available about family-support facilities;what little is known about services shows that there isinadequate intersectoral collaboration; noinformation is available about training of staff andhuman resources except for anecdotal references toinadequate numbers and poor training

More research should be services oriented and generate interestin developing adequate services that are both communitybased and special-school based; more family-support facilitiesshould be developed; the need to develop intersectoralcollaboration between services should be stressed throughresearch; because caring for children with disabilities involvesspecialized training with support from other staff, it is essentialto develop training programs and address this issue throughresearch

Legislation and policies Limited information is available on legislation forchildren with disability in China and in some Arabiancountries and iodine supplementation policies inIndia; no information is available about theeffectiveness of the policies or legislation

More debate should be generated about evidence-based publichealth policies and legislation; the effectiveness of legislationto support children with disabilities and their families shouldbe studied


provide knowledge and supportive services to familieswith at-risk children.

Knowledge About Childhood Disability and Regional VariationThis review highlights the paucity of information onchildhood disability available from LAMI countries. Acursory search of medical databases for childhood dis-ability shows the vast discrepancies in knowledge be-tween LAMI and high-income countries. Researchers indifferent high-income countries have a better senseabout the burden of the problem, its economic impact,and trends over time.97–100

It is evident from the review that there is a paucity ofresearch from some parts of the world, especially Southand Central America, southeast Asia, central Asia, andlarge parts of Africa. Some research is available fromAsian countries such as India, Bangladesh, Pakistan andChina and African countries such as South Africa andNigeria.

Although one reason for this asymmetry could bethat most indexed medical journals accept only English-language articles, it is possible that the true reason isan actual deficit in quality research; for example, Chinais able to publish a number of studies in internationaljournals despite its medical fraternity not being taught inEnglish. However, a better understanding of this is onlypossible through a multilanguage search of regional da-tabases.

Definitions and Screening InstrumentsOne issue that has often been a major concern amongresearchers in the area of childhood disability is thedefinitions used to define the problems and standardizedmethods of measuring them. The studies reviewed failedto address this issue and used varying definitions ofdisability that were based on either cutoff scores ondifferent measures of intellectual impairment or levels ofsound above which hearing loss was assumed. This re-sults in a medical diagnosis, which is not the best way toascertain level of disability in children because it doesnot take into account the level of functional limitations,degree of service utilization, or impairment of role per-formances.101 The WHO102 has developed a specific tooland assigned specific definitions for standardized assess-ment of disability and impairment that incorporate allthe above-mentioned concerns in the measure. How-ever, none of the recent studies from LAMI countriesused a comprehensive definition or used any measurethat provides a wholesome estimate of the problem ofchildhood disability.

Although the TQ was the most common screeningtool used by researchers, its validity is highest for iden-tifying forms of disabilities on the more severe end of thespectrum but has limitations in detecting milder disabil-ities. Research has also found that the questions onhearing, vision, and seizures in the TQ have lower reli-

ability compared with other questions, and the questionon “slowness” is highly dependent on cultural under-standing and parental perceptions and is most likely toresult in heterogeneity across different cultures.103 More-over, TQ-positive individuals must undergo secondarytesting to identify the precise nature of the disability.Thus, more research needs to be done to develop stan-dardized, culturally sensitive, valid instruments for useby professionals that can conform to the standard defi-nitions of the concept of disability as outlined by re-searchers in the area of childhood disability, or research-ers in LAMI countries need to use the standard WHOinstrument in conducting research. Moreover, strategiesthat link community-based screening (eg, with the TQ)with gold-standard professional assessment and devel-opment of a tailored intervention approach need to beworked out.

An oft-used technique by researchers in LAMI coun-tries was to use a standard instrument and translate andback-translate it into their native language and use thattranslated version for their research. This fails to addresscultural differences in expression of symptoms, and amore complex process that requires generating newquestions and performing extensive psychometric teststo assess reliability and validity is needed. Unfortunately,this would take time and money, both of which arelimited in LAMI countries, given their limited pool ofexpertise and funding. Collaboration with internationalinstitutes with experience in such research could be away of reducing the implication of inadequate humanresources. Also, given the expense of modern research,collaborations with other institutes and even across sec-tors, both nationally and internationally, might be a wayof sharing the cost and burden of research.

EpidemiologyAnother issue that prevents researchers in LAMI coun-tries from developing a better understanding of the bur-den of childhood disability is the type of research under-taken. A majority of the studies from LAMI countries arecross-sectional in nature and provide some epidemio-logic estimate; however, few researchers have conductedcohort studies, and none have addressed the issue ofdevelopmental changes over time and their effect ondisability. All the cohort studies focused on intellectualdisabilities and primarily studied clinical outcomes. Be-cause cohort studies provide good estimates of causalityand allow one to track changes of different predictorsover time, it is imperative that more research in LAMIcountries focus on conducting longitudinal studies toimprove the understanding of childhood disability.Other advantages of longitudinal studies are that theyallow one to assess multiple outcomes such as differenttypes of disabilities or different types of service utiliza-tion. This, in turn, would allow better estimation of theburden of disability and the gap in health-related service


utilization. The limited number of RCTs make it difficultto evaluate the efficacy of any intervention. All the RCTsmainly focused on intellectual disability, primarily froma south-Asian perspective. Although these studies areinvaluable, especially given the paucity of quality re-search, others will need to use this information to de-velop studies that are suitable for their own setting andarea of focus.

This review shows that a number of researchers hadfocused on certain epidemiologic aspects of childhooddisability. However, most of the epidemiologic researchis related to descriptive epidemiology that outlines theprevalence of different types of disabilities and enumer-ates their association with certain etiologies. Less isknown about the impact of childhood development ondisability or the variation across age groups according toseverity, although the importance of the neonatal periodis evident. Even the etiology is mere association, becausemost studies were cross-sectional in nature. One way inwhich the epidemiologic research could be improved isby generating more analytically oriented research. Someof the areas of research that epidemiologic studies needto address are the association between different types ofdisabilities and child development and the associationbetween service utilization and type or severity of im-pairment. Parental needs and expectations and their linkwith available service-utilization rates are other areasthat need to be investigated. More qualitative researchon culturally appropriate assessment techniques, per-ceptions of stigma, and needs assessment is also re-quired.

Prevention and Promotion and Services Related to DisabilityAlthough researchers have identified a number of pre-vention and promotion activities that are deemed ben-eficial in alleviating childhood disability in the context ofLAMI countries (Table 4), few have actually reported onspecific early childhood intervention–related researchthat they have conducted, the exception being RCTs inthe area of intellectual disability45,56,58 or involvement innational programs on salt iodization in India,87 whichhave been found to be beneficial in reducing neonatalhypothyroidism.65 However, researchers realize the im-portance of community-based interventions and servicesthat involve families as the most sustainable of activities.This is encouraging, given that recent evaluation of theIntegrated Management of Childhood Illness program inBangladesh, Brazil, Peru, Tanzania, and Uganda hashighlighted the importance of community-based, fami-ly-oriented programs that are based on a sound epide-miologic and cultural framework.104 One strategy couldbe to include key indicators of neurodevelopment forpreschool children across a range of domains includingmotor, vision, hearing, and intellectual within largermaternal and child health care programs; this wouldrequire strong linkage between community-based pro-

grams and clinic-based family care services, includingdiagnostic and intervention services. The need for propersupervision and effective referral services was alsostressed by others when they assessed the importance oftrained birth attendants in reducing perinatal complica-tions of mothers and newborns.105 The importance of allthese factors has also been realized by researchers work-ing in a LAMI setup in which community-based clinicsthat provide family-based interventions are being pro-moted along with more emphasis on intersectoral col-laboration to develop comprehensive programs.67,68,85,86

Another important issue related to disabilities, espe-cially in LAMI countries, is the stigma attached to certaindisabilities such as intellectual disability. Intellectual dis-ability along with other mental disorders and epilepsyare highly stigmatizing.106,107 Stigma attached to hearingimpairment has also been found.108 Some research-ers47,69,83 have identified this issue and have tried toaddress it through their research, but more needs to bedone. Stigma often unknowingly begins at home, wherefamilies undermine the efforts of their children and re-strict activities in which they would like to be involved.This is further amplified within the community whenthere is failure to assimilate individuals, particularlythose with mild disabilities within the mainstream, andthey are marginalized to special schools or offered re-stricted job opportunities suitable only for people withdisabilities. Evidences of such an attitude are develop-ment of special schools and admission of any child witha minimal level of disability in such schools. Educatorsoften realize the importance of including these childrenin normal schools and providing special care, but advo-cacy is lacking. In LAMI countries, inadequate assess-ment of the child’s degree of impairment often results infaulty choices. In some cases, simple readjustments suchas using microphones in class or placing a child near theteacher can alleviate the problem associated with hear-ing or vision impairment.31 Thus, childhood disabilityneeds to be recognized and addressed by the society.Although milder forms of disability can be managedbetter by providing wholesome community-based ser-vices that provide education to the children besidesother services, the more severe forms can be tackled byaddressing the different etiologic factors that lead tosevere disabilities (eg, encephalitis, meningitis, cerebralmalaria, birth asphyxia/intrapartum hypoxia, iodine de-ficiency, iron-deficiency anemia, consanguinity, etc).6

However, some children who suffer from severe dis-ability do require special training. The need for addi-tional adequately trained staff to deliver such specialcare is highlighted by many researchers. The activitiescould entail services related to screening17,53 or specialistactivities related to rehabilitation70 or establishment ofspecial schools.72 The importance of developing manage-rial skills to coordinate effectively is an important com-ponent of any intersectoral activity and is required in


services related to disability. The need for staff trained inthe coordination of services between different profes-sionals and services has been highlighted by others.82,85

From a research perspective, no studies could be iden-tified that addressed the issue of cost evaluations ofspecific intervention in LAMI countries. The reasons areinadequate knowledge about the efficacy of interven-tions in LAMI countries and, where information is avail-able, lack of knowledge about their effectiveness in com-munity settings. In the presence of limited budgetsdedicated to specific interventions, the importance ofmore research in the area of cost-effective interventionsusing rigorous study designs is further underlined.

LegislationAlmost no information is available about existing poli-cies and legislation with regards to childhood disabilityin LAMI countries. The little information available per-tains to the implementation of immunization programsor iodine-supplementation programs. Most of the avail-able discussion focuses on the need to develop legislationrelated to promotion of immunization and prohibition ofconsanguineous marriage in China14 or the rights ofchildren with disability.69,72 Only 2 recent studies65,67

have discussed legislative issues or policy implications;they discussed screening for neonatal hypothyroidismand existing education and child development schemesfrom an Indian perspective. The importance of legisla-tion cannot be overestimated given the stigma attachedto certain conditions such as intellectual disabilities. Na-tional health and education policies should also addressthe issue of disability in a more comprehensive andcollective manner to enable effective utilization of avail-able resources.

CONCLUSIONSMost researchers in LAMI countries have focused oncross-sectional community-based epidemiologic studiesthat have ascertained either the prevalence of certaintypes of disabilities or the etiology of those disabilities.The methods used have varied and often failed to satisfybasic parameters by which the qualities of the studieswere judged. Different instruments have been used tomeasure different types of impairments, but the TQ re-mained the most widely used screening tool even after20 years since its introduction. RCTs were few in num-ber; thus, information about effective evidence-basedinterventions was limited. Research in the area of ser-vices and legislation is negligible. Thus, there are hugegaps in knowledge regarding childhood disability inLAMI countries. Although it is desirable to collect infor-mation from all countries, this might not be a feasibleoption for many countries with limited resources andresearch capabilities. Hence, countries that have betterresearch capacities should strive to generate quality re-search that could be extrapolated to some extent to

other similar situations. More focused, organized, andhigher-quality research that embodies greater interna-tional collaboration is needed before implementation ofsound public health practices for prevention and man-agement of childhood disabilities and impairments insuch countries.

ACKNOWLEDGMENTSThis review was supported by the Thrasher ResearchFund, March of Dimes, Save the Children-US (through agrant from the Bill & Melinda Gates Foundation to theSaving Newborn Lives program), the Wellcome TrustBurroughs Wellcome Fund, and the Programme forGlobal Paediatric Research.

REFERENCES1. Ahmad OB, Lopez AD, Inoue M. The decline in child

mortality: a reappraisal. Bull World Health Organ. 2000;78:1175–1191

2. United Nations Children’s Fund. The State of the World’s Chil-dren. New York, NY: United Nations Children’s Fund; 2005:27–28

3. Bryce J, El Arifeen S, Bhutta ZA, et al. Getting it right forchildren: a review of UNICEF joint health and nutrition strat-egy for 2006–15. Lancet. 2006;368:817–819

4. Darmstadt GL, Bhutta ZA, Cousens S, et al. Evidence-based,cost-effective interventions: how many newborn babies canwe save? Lancet. 2005;365:977–988

5. Grantham-McGregor S, Cheung YB, Cueto S, et al. Develop-mental potential in the first 5 years for children in developingcountries. Lancet. 2007;369:60–70

6. Walker SP, Wachs TD, Meeks Gardener J, et al. Child de-velopment: risk factors for adverse outcomes in developingcountries. Lancet. 2007;369:145–157

7. Engle PL, Black MM, Behrman JR, et al. Strategies to avoidthe loss of developmental potential in more than 200 millionchildren in the developing world. Lancet. 2007;369:229–242

8. World Bank Group. Country classification. Available at: www.worldbank.org/data/countryclass/classgroups.htm. AccessedJune 16, 2006

9. Stata [computer program]. Version 9. College Station, TX:Stata Corporation; 2005

10. Steinkuller PG, Du L, Gilbert C, Foster A, Collins ML, CoatsDK. Childhood blindness. J AAPOS. 1999;3:26–32

11. Castillo Ariza M, Gonzalez Sanchez M, Reyes Baez JF, ArizaCastillo M. Longitudinal study of intelligence quotient of agroup of Dominican children who had experienced third de-gree malnutrition in their first two years of life [in Spanish].Arch Domin Pediatr. 1988;24:83–88

12. Al-Ansari A. Prevalence estimates of physical disability inBahrain: a household survey. Int Disabil Stud. 1989;11:21–24

13. Berg AL, Papri H, Ferdous S, Khan NZ, Durkin MS. Screeningmethods for childhood hearing impairment in rural Bang-ladesh. Int J Pediatr Otorhinolaryngol. 2006;70:107–114

14. Chen J, Simeonsson RJ. Prevention of childhood disability inthe People’s Republic of China. Child Care Health Dev. 1993;19:71–88

15. Christianson AL, Zwane ME, Manga P, et al. Children withintellectual disability in rural South Africa: prevalence andassociated disability. J Intellect Disabil Res. 2002;46:179–186

16. Datta SS, Russell PSS, Gopalakrishna SC. Burden among thecaregivers of children with intellectual disability: associationsand risk factors. J Learn Disabil. 2002;6:337–350

17. Dave U, Shetty N, Mehta L. A community genetics approachto population screening in India for mental retardation: a


model for developing countries. Ann Hum Biol. 2005;32:195–203

18. Durkin MS, Hasan ZM, Hasan KZ. Prevalence and correlatesof mental retardation among children in Karachi, Pakistan.Am J Epidemiol. 1998;147:281–288

19. McPherson B, Holborow CA. A study of deafness in WestAfrica: the Gambian Hearing Health Project. Int J Pediatr Oto-rhinolaryngol. 1985;10:115–135

20. Natale JE, Joseph JG, Bergen R, Thulasiraj RD, RahmathullahL. Prevalence of childhood disability in a southern Indian city:independent effect of small differences in social status. Int JEpidemiol. 1992;21:367–372

21. Nirmalan PK, John RK, Gothwal VK, Baskaran S, Vijaya-lakshmi P, Rahmathullah L. The impact of visual impairmenton functional vision of children in rural south India: theKariapatti Pediatric Eye Evaluation Project. Invest OphthalmolVis Sci. 2004;45:3442–3445

22. Sauvey S, Osrin D, Manandhar DS, Costello AM, Wirz S.Prevalence of childhood and adolescent disabilities in ruralNepal. Indian Pediatr. 2005;42:697–702

23. Serpell R. Assessment criteria for severe intellectual disabilityin various cultural settings. Int J Behav Dev. 1988;11:117–144

24. Stein Z, Belmont L, Durkin M. Mild mental retardation andsevere mental retardation compared: experiences in eight lessdeveloped countries. Ups J Med Sci Suppl. 1987;44:89–96

25. Tekle-Haimanot R, Abebe M, Gebre-Mariam A, et al. Com-munity-based study of neurological disorders in rural centralEthiopia. Neuroepidemiology. 1990;9:263–277

26. Bastos I, Mallya J, Ingvarsson L, Reimer A, Andreasson L.Middle ear disease and hearing impairment in northernTanzania: a prevalence study of schoolchildren in the Moshiand Monduli districts. Int J Pediatr Otorhinolaryngol. 1995;32:1–12

27. Hatcher J, Smith A, Mackenzie I, et al. A prevalence study ofear problems in school children in Kiambu district, Kenya,May 1992. Int J Pediatr Otorhinolaryngol. 1995;33:197–205

28. Kirkpatrick M, Costello AL, Palmer HM, Pandey BD. Is theprevalence of childhood hearing impairment over-estimatedin developing countries? J Trop Pediatr. 1992;38:92

29. Lyn C, Jadusingh WA, Ashman H, Chen D, Abramson A,Soutar I. Hearing screening in Jamaica: prevalence of otitismedia with effusion. Laryngoscope. 1998;108:288–290

30. Newton VE, Macharia I, Mugwe P, Ototo B, Kan SW. Evalu-ation of the use of a questionnaire to detect hearing loss inKenyan pre-school children. Int J Pediatr Otorhinolaryngol.2001;57:229–234

31. Olusanya BO. Classification of childhood hearing impair-ment: implications for rehabilitation in developing countries.Disabil Rehabil. 2004;26:1221–1228

32. Olusanya BO, Okolo AA, Ijaduola GT. The hearing profile ofNigerian school children. Int J Pediatr Otorhinolaryngol. 2000;55:173–179

33. Prescott CA, Omoding SS, Fermor J, Ogilvy D. An evaluationof the “voice test” as a method for assessing hearing in chil-dren with particular reference to the situation in developingcountries. Int J Pediatr Otorhinolaryngol. 1999;51:165–170

34. Gomes M, Lichtig I. Evaluation of the use of a questionnaireby non-specialists to detect hearing loss in preschool Brazilianchildren. Int J Rehabil Res. 2005;28:171–174

35. McConkey R, Mphole P. Training needs in developingcountries: experiences from Lesotho. Int J Rehabil Res. 2000;23:119–123

36. Mutua NK, Miller JW, Mwavita M. Resource utilization bychildren with developmental disabilities in Kenya: discrep-ancy analysis of parents’ expectation-to-importance apprais-als. Res Dev Disabil. 2002;23:191–201

37. McConachie H, Huq S, Munir S, et al. Difficulties for mothers

in using an early intervention service for children with cere-bral palsy in Bangladesh. Child Care Health Dev. 2001;27:1–12

38. Arens LJ, Molteno CD. A comparative study of postnatally-acquired cerebral palsy in Cape Town. Dev Med Child Neurol.1989;31:246–254

39. Bhatia M, Joseph B. Rehabilitation of cerebral palsy in adeveloping country: the need for comprehensive assessment.Pediatr Rehabil. 2001;4:83–86

40. Shawky S, Abalkhail B, Soliman N. An epidemiological studyof childhood disability in Jeddah, Saudi Arabia. Paediatr Peri-nat Epidemiol. 2002;16:61–66

41. Kello AB, Gilbert C. Causes of severe visual impairment andblindness in children in schools for the blind in Ethiopia. Br JOphthalmol. 2003;87:526–530

42. Singhi PD, Ray M, Suri G. Clinical spectrum of cerebral palsyin north India: an analysis of 1,000 cases. J Trop Pediatr.2002;48:162–166

43. Pal DK, Chaudhury G. Preliminary validation of a parentaladjustment measure for use with families of disabled childrenin rural India. Child Care Health Dev. 1998;24:315–324

44. Chen J, Simeonsson RJ. Child disability and family needs inthe People’s Republic of China. Int J Rehabil Res. 1994;17:25–37

45. McConachie H, Huq S, Munir S, Ferdous S, Zaman S, KhanNZ. A randomized controlled trial of alternative modes ofservice provision to young children with cerebral palsy inBangladesh. J Pediatr. 2000;137:769–776

46. Grantham-McGregor SM, Powell CA, Walker SP, Himes JH.Nutritional supplementation, psychosocial stimulation, andmental development of stunted children: the Jamaican Study.Lancet. 1991;338:1–5

47. Pal DK, Chaudhury G, Sengupta S, Das T. Social integration ofchildren with epilepsy in rural India. Soc Sci Med. 2002;54:1867–1874

48. Thorburn M, Desai P, Paul TJ, Malcolm L, Durkin M, David-son L. Identification of childhood disability in Jamaica: the tenquestion screen. Int J Rehabil Res. 1992;15:115–127

49. al-Ansari A. Etiology of mild mental retardation among Bahr-aini children: a community-based case control study. MentRetard. 1993;31:140–143

50. Qi-hua Z, Zhi-Xhiang Z, Zhu L, et al. An epidemiological studyon mental retardation among children in Chang-Qiao area ofBeijing. Chin Med J (Engl). 1986;99:9–14

51. Nasir JA, Chanmugham P, Tahir F, Ahmed A, Shinwari F.Investigation of the probable causes of specific childhooddisabilities in eastern Afghanistan (preliminary report). CentEur J Public Health. 2004;12:53–57

52. Bashir A, Yaqoob M, Ferngren H, et al. Prevalence and asso-ciated impairments of mild mental retardation in six- to ten-year old children in Pakistan: a prospective study. Acta Paedi-atr. 2002;91:833–837

53. Gustavson KH. Prevalence and aetiology of congenital birthdefects, infant mortality and mental retardation in Lahore,Pakistan: a prospective cohort study. Acta Paediatr. 2005;94:769–774

54. Izuora GI. Aetiology of mental retardation in Nigerian chil-dren around Enugu. Cent Afr J Med. 1985;31:13–16

55. Khan NZ, Ferdous S, Munir S, Huq S, McConachie H. Mor-tality of urban and rural young children with cerebral palsy inBangladesh. Dev Med Child Neurol. 1998;40:749–753

56. Hamadani JD, Fuchs GJ, Osendarp SJM, Huda SN, Grantham-McGregor SM. Zinc supplementation during pregnancy andeffects on mental development and behaviour of infants: afollow-up study. Lancet. 2002;360:290–294

57. Hamadani JD, Fuchs GJ, Osendarp SJM, Khatun F, Huda SN,Grantham-McGregor SM. Randomized controlled trial of the


effect of zinc supplementation on the mental development ofBangladeshi infants. Am J Clin Nutr. 2001;74:381–386

58. Russell PSS, al John JK, Lakshmanan JL. Family interventionfor intellectually disabled children: randomised controlledtrial. Br J Psychiatry. 1999;174:254–258

59. Durkin M. The epidemiology of developmental disabilities inlow-income countries. Ment Retard Dev Disabil Res Rev. 2002;8:206–211

60. Miles M. Effective use of action-oriented studies in Pakistan.Int J Rehabil Res. 1991;14:25–35

61. Tao K. Mentally retarded persons in the People’s Republic ofChina: review of epidemiological studies and services. Am JMent Retard. 1988;93:193–199

62. Gell FM, White EM, Newell K, et al. Practical screening pri-orities for hearing impairment among children in developingcountries. Bull World Health Organ. 1992;70:645–655

63. Mittler P. Finding and helping severely mentally handicappedchildren in developing countries: summary of discussions. IntJ Ment Health. 1981;10:107–116

64. Davidson LL, Durkin MS, Khan NZ. Studies of children indeveloping countries: how soon can we prevent neurodis-ability in childhood? Dev Med Child Neurol Suppl. 2003;95:18 –24

65. Bhatara V, Sankar R, Unutzer J, Peabody J. A review of thecase for neonatal thyrotropin screening in developingcountries: the example of India. Thyroid. 2002;12:591–598

66. Grantham-McGregor SM, Fernald LC. Nutritional deficienciesand subsequent effects on mental and behavioral develop-ment in children. Southeast Asian J Trop Med Public Health.1997;28(suppl 2):50–68

67. Nair MKC, Radhakrishnan RS. Early childhood developmentin deprived urban settlements. Indian Pediatr. 2004;41:227–237

68. Shah PM. Prevention of mental handicaps in children inprimary health care. Bull World Health Organ. 1991;69:779–789

69. Sonnander K, Claesson M. Classification, prevalence, preven-tion and rehabilitation of intellectual disability: an overviewof research in the People’s Republic of China. J Intellect DisabilRes. 1997;41:180–192

70. Ran C, Wen S, Yonghe W, Honglu M. A glimpse of commu-nity-based rehabilitation in China. Disabil Rehabil. 1992;14:103–107

71. Wirz SL, Lichtig I. The use of non-specialist personnel inproviding a service for children disabled by hearing impair-ment. Disabil Rehabil. 1998;20:189–194

72. Yousef JM. Education of children with mental retardation inthe Arab countries. Ment Retard. 1993;31:117–121

73. McPherson B, Swart SM. Childhood hearing loss in Sub-Saharan Africa: a review and recommendations. Int J PediatrOtorhinolaryngol. 1997;40:1–18

74. Jarrar JM. Arabic Version of AAMD Arabic Behaviour Scale, Man-ual and Bahraini Norms. Manama, Bahrain: Hope Institute;1985

75. Cicchetti DV, Sparrow SS. Assessment of adaptive behaviourin young children. In: Johnson JH, Goldman J, eds. Develop-mental Assessment in Clinical Child Psychology: A Handbook. NewYork, NY: Pergamon Press; 1990:173–196

76. Griffiths R. The Abilities of Young Children. Amersham, UnitedKingdom: Association for Research in Infant and ChildDevelopment; 1984

77. Frankenburg WK, Dodds J, Fandal A. Denver DevelopmentalScreening Test. Denver, CO: University of Colorado MedicalCenter; 1975

78. Tombokan-Runtukahu J, Nitko AJ. Translation, cultural ad-justment, and validation of a measure of adaptive behavior.Res Dev Disabil. 1992;13:481–501

79. Couper J. Prevalence of childhood disability in rural Kwa-Zulu-Natal. S Afr Med J. 2002;92:549–552

80. Belmont L. Final Report of the International Pilot Study of SevereChildhood Disability. New York, NY: Gertrude Sergievsky Cen-tre, Columbia University; 1984

81. Keeffe JE, Lovie-Kitchin JE, Maclean H, Taylor HR. A simpli-fied screening test for identifying people with low vision indeveloping countries. Bull World Health Organ. 1996;74:525–532

82. Hartley SD, Wirz SL. Development of a “communication dis-ability model” and its implication on service delivery in low-income countries. Soc Sci Med. 2002;54:1543–1557

83. Thorburn MP. The role of the family: disability and rehabili-tation in rural Jamaica. Lancet. 1999;354:762–763

84. Gopal R, Hugo SR, Louw B. Identification and follow-up ofchildren with hearing loss in Mauritius. Int J Pediatr Otorhino-laryngol. 2001;57:99–113

85. Richmond JB, Butler JA, Stenmark S. Reducing childhooddisability in the 80s. Hosp Community Psychiatry. 1983;34:507–514

86. Simeonsson RJ. Early prevention of childhood disability indeveloping countries. Int J Rehabil Res. 1991;14:1–12

87. Kochupillai N. Neonatal hypothyroidism in India. Mt SinaiJ Med. 1992;59:111–115

88. Bender DE, Auer C, Baran J, Rodriguez S, Simeonsson R.Assessment of infant and early childhood development in aperiurban Bolivian population. Int J Rehabil Res. 1994;17:75–81

89. Hartley SD. Children with verbal communication difficultiesin eastern Uganda: a social survey. Afr J Spec Needs Educ.1998;3:11–19

90. Biritwum RB, Devres JP, Ofosu-Amaah S, Marfo C, Essah ER.Prevalence of children with disabilities in Central Region,Ghana. West Afr J Med. 2001;20:249–255

91. Tamrat G, Kebede Y, Alemu S, Moore J. The prevalence andcharacteristics of physical and sensory disabilities in northernEthiopia. Disabil Rehabil. 2001;23:799–804

92. Paul TJ, Desai P, Thorburn MJ. The prevalence of childhooddisability and related medical diagnosis in Clarendon, Ja-maica. West Indian Med J. 1992;41:8–11

93. Sebikari SRK. Neurological disorders in children at MulagoHospital. East Afr Med J. 1974;51:95–100

94. United Nations. Disability Statistics Compendium. New York, NY:Department of International Economic and Social Affairs Sta-tistical Office, United Nations; 1990

95. World Health Organization. Concept Paper: World Report onDisability and Rehabilitation. Geneva, Switzerland: World HealthOrganization; 2006. Available at: www.who.int/disabilities/publications/dar�world�report�concept�note.pdf. Accessed Octo-ber 26, 2006

96. World Health Organization. Disability, including prevention,management and rehabilitation. In: 58th World Health As-sembly Resolution. Geneva, Switzerland: World Health Orga-nization; 2005. Document WHA58.23. Available at: www.who.int/disabilities/WHA5823�resolution�en.pdf. AccessedMarch 27, 2007

97. Ayyangar R. Health maintenance and management in child-hood disability. Phys Med Rehabil Clin N Am. 2002;13:793–821

98. Cans C, Guillem P, Fauconnier J, Rambaud P, Jouk PS. Dis-abilities and trends over time in a French county, 1980–91.Arch Dis Child. 2003;88:114–117

99. Hutchison T, Gordon D. Ascertaining the prevalence of child-hood disability. Child Care Health Dev. 2005;31:99–107

100. Newacheck PW, Inkelas M, Kim SE. Health services use andhealth care expenditures for children with disabilities. Pediat-rics. 2004;114:79–85


101. Mudrick NR. The prevalence of disability among children:paradigms and estimates. Phys Med Rehabil Clin N Am. 2002;13:775–792

102. World Health Organization. International Classification of Func-tioning, Disability, and Health: Final Draft, Full Version. Geneva,Switzerland: Classification, Assessment, Surveys and Termi-nology Team, World Health Organization; 2001

103. Durkin MS, Wang W, Shrout PE, et al. Evaluating a tenquestions screen for childhood disability: reliability and inter-nal structure in different cultures. J Clin Epidemiol. 1995;48:657–666

104. Bryce J, Victora CG, Habicht JP, Black RE, Scherpbier RW;MCE-IMCI Technical Advisors. Programmatic pathways tochild survival: results of a multi-country evaluation of Inte-grated Management of Childhood Illness. Health Policy Plan.2005;20(suppl 1):i5–i17

105. Lawn JE, Tinker A, Munjanja SP, Cousens S. Where is ma-ternal and child health now? Lancet. 2006;368:1474–1477

106. Rusch N, Angermeyer MC, Corrigan PW. Mental illnessstigma: concepts, consequences, and initiatives to reducestigma. Eur Psychiatry. 2005;20:529–539

107. World Health Organization. The World Health Report 2001:Mental Health—New Understanding, New Hope. Geneva,Switzerland: World Health Organization; 2001

108. Hetu R. The stigma attached to hearing impairment. ScandAudiol Suppl. 1996;43:12–24

109. Black M. Handicapped children in a developing nation: Ban-gladesh. Am J Occup Ther. 1977;31:499–504

110. McConkey R, Mariga L, Braadland N, Mphole P. Parents astrainers about disability in low income countries. Int J DisabilDev Educ. 2000;47:310–317

111. Replogle J. Guatemala’s disabled children face a lifetime ofchallenges. Lancet. 2005;365:1757–1758


APPENDIX 1 Qualitative Information on Services, Prevention, and Promotion, and Legislation and Policy

Article Country Services Prevention and Promotion Legislation and Policy

Bender et al88 Bolivia Only 8% of womenwith childrenwith developmental delay hadprenatal care, and theywere 4.3times less likely to have�2prenatal visits and 2.6 times lesslikely to receive the same level ofcare

— —

Bhatara et al65 India The study suggests implementingneonatal screening forthyrotropin in a phasedmannerin different hospitals in India andimproving antenatal monitoringofmothers with hypothyroidism

The study suggests implementingneonatal screening forthyrotropin and antenatalmonitoring ofmothers withhypothyroidism to reduce therisk of congenitalhypothyroidism-inducedintellectual disability

Discusses the current program on iodine-deficiency disorders and outlines theneed to develop low-costcomprehensive programs to tackle theproblem and include neonatalscreening for thyroid function

Bhatia and Joseph39 India The primary care physician failed toassess for other disabilities, andepilepsy was the only disabilitythat received adequatetreatment

— —

Biritwum et al90 Ghana — Steps to increase public awarenessto reduce discrimination anddeveloping education andtraining activities for suchchildrenwere advocated

—

Black109 Bangladesh Rudimentary services forhandicapped childrenwereavailable only in Dhaka at thattime; the role of families andinvolvement of families intherapywas identified; thetherapist not only identified rolesfor the child within the familysetup, but therapy includedmeeting periodically with thechild within a family setup andassessing progress

— —

Chen and Simeonsson14 China Convalescent homes and hospitalstomanage different physicalconditions causing disabilitiesand special education schoolsare present; there are futureplans to integrate disability-reducingmeasures with primarycare and increasing publiceducation, increasing training ofpersonnel, and improvingresearch

Different prevention techniqueshave been implemented;universal prevention(immunization), indicatedprevention (genetic counseling),secondary prevention (improvedmaternal and child care andscreening for phenylketonuria),and tertiary prevention(rehabilitation services)

Laws to protect women and children sothat disabilities are limited are needed;laws banning consanguineousmarriageand facilitating compulsoryimmunization and protection of thosewith disabilities are also essential

Christianson et al15 South Africa Most childrenwith severeintellectual disability andepilepsy were on antiepilepticdrugs, but fewwithmildintellectual disability andepilepsy were on antiepilepticdrugs

— —

Dave et al17 India There is a need for training of staffto improve awareness amongclients about genetic screeningfor intellectual disability and itstreatment includingrehabilitation facilities wheneveravailable; the development of aproper referral system forscreening for genetic factors isalso required

— —


APPENDIX 1 Continued


Davidson et al64 Developingcountries

— Some of the common causes ofdisability are sickle cell anemiagiving rise to motor disability,Down syndrome,consanguinity, intrauterinegrowth retardation, cerebralpalsy, HIV/AIDS, nutritionaldeficiencies, infections,postnatal injuries includingtrauma related to war, lead andarsenic in water, poverty, andpoor maternal education;preventive measures likeimmunization, oral rehydrationtherapies, nutritionalsupplements, screening forvision and hearing impairmentand prevention of mother-to-child transmission of HIV aresome of the preventivemeasures in practice

—

Gell et al62 Developingcountries

— Reviewed articles outlined theimportance of early screeningin school-going children usingfield audiometers and clinicalexamination; they alsosuggested screening infants byusing distraction techniquesand performance tests

—

Gopal et al84 Mauritius Majority of parents contactedpublic- or private-sectorhospitals or clinics once theyidentified hearing impairmentin their children and werereferred to an ear, nose, andthroat specialist or speechtherapist; althoughidentification of impairmentwas within acceptable periodof time, there was a big timelag between referral forassessment and placement ofhearing aid; the delay had beenattributed to break-up of asmooth network of referralbetween specialists and theorganization that distributeshearing aids; the role ofcommunity workers to speedup this process has beenunderlined

Some prevention and promotionmethods being practiced arepublic campaigns to raiseawareness about hearingimpairment, development of anational screening program,and increase awareness amongparents, community workers,teachers, and government toidentify and manage hearingimpairment among childrenmore effectively

—

Grantham-McGregorand Fernald66

Developingcountries

— Small for gestational age andprotein-energy malnutritionled to reduced cognitivedevelopment; providing schoolbreakfast has shown bettercognitive performance in theshort-term but long-termbenefits have not beenascertained; iodinesupplementation, especiallyduring pregnancy, is beneficial;iron-deficiency anemia treatedby iron supplementation is

—




beneficial in older children, butits effect on children�2 y isunsubstantiated; othermicronutrient deficits likevitamin A and zinc are alsobeneficial

Gustavson53 Pakistan Steps were taken to improvematernal health care andscreening facilities for geneticrisks for disabilities

A structured prevention programwas initiated in 1997 in severalvillages and involved 12 000children under the age of 12 y;trained birth attendants/healthworkers were initiated into thepreventionmodel to improvematernal and child health care;other services like providinginformation about the risks ofgenetic disorders, screening forhypothyroidismwherenecessary, vaccination schemes,identification of childrenwithdevelopmental delay, andorganizing specific stimulationactivities for themwere alsostarted

—

Hamadani et al56 Bangladesh — Study aimed to find the effect ofantenatal zinc supplementationon neurobehavioraldevelopment of the infant

—

Hamadani et al57 Bangladesh — Study aimed to find the effect ofzinc supplementation onneurobehavioral development ofthe infant

—

Hartley andWirz82 Nigeria andUganda

Different providers have specificroles; the government’s roles areto increase social awareness,increase cooperation betweendifferent governmental agencies,and develop community-basedservices; professionals shouldinvolve other professionals fromdifferent expertise working in theareas of disabilities, includesemiprofessionals and expertisefrom all sources, involve familiesin decision-making, increase theissue of social awareness inresearch, and develop skills-trainingmodules; families shouldreduce labeling, haveinvolvement in decision-making,and promote active listening andcommunication;nongovernmental organizationsshould involve those affectedand their families in rehabilitationand decision-making, coordinatewith different service providers,and use nonspecialists wherefeasible

— —




Hartley89 Uganda TheMinistry of Education has anEducation Assessment andResources Service to cover allchildrenwith learning disorders;the Uganda Institute for SpecialEducation provides training forteachers and also conducts a 1-ypostgraduate course oncommunity-based rehabilitation;other organizations also conductlocal training of communityworkers tomeet the needs ofchildrenwith disabilities

— —

Izuora54 Nigeria Maternal and child health servicesand genetic counseling servicesneed to be improved;rehabilitation facilities are few,especially for the youngestgroup; families form a strongresource for care

The importance of bettermaternaland child health care andimmunization facilities wasunderlined

—

Kello and Gilbert41 Ethiopia There is a need to improve primarycare andmaternal and childhealth care facilities with theactive involvement of thegovernment

Common prevention practices likeimproved primary health care,immunization, vitamin Asupplementation, healtheducation, and family spacingare being used

—

Kochupillai87 India — The authors identified the linkbetween iodine deficiency andintellectual impairment, whichled to the development of thenational program to combatiodine deficiency in the form ofiodized salt, especially in theendemic areas of India

—

McConachie et al45 Bangladesh The study found that a distancetraining package had a definiterole in community-basedrehabilitation of childrenwithdisabilities, though accessibilityneeded to be improved bycreatingmore centers providingsuch services

— —

McConachie et al37 Bangladesh The Bangladesh ProtibandhiFoundation has set up 2outreach centers (rural andurban) wheremothers withchildrenwith disabilities drop infor training in skills tomanagetheir children; a distance trainingpackage has been developedthat provides physical, daily-living, speech, language, andcognitive skills training to parents

— —

McConkey andMphole35 Lesotho The parents wanted services thatinvolved themselves as trainersfor future service providers; theyalso wished for increasedawareness of human rights andbetter understanding by thecommunity of their children’sproblems and a betterinteraction; the need formorespecialists was highlighted,including community-basedworkers

— —




McConkey et al110 Lesotho The study evaluated the activitiesconducted by parents of childrenwith disabilities after an earlierstudy had shown that theywanted to be involved in furtheractivities; each community hadbeen able to conduct at least 1meeting (total of 15meetings)where issues like disability rights,involvement of schools andothermembers of the com-munity, approaching healthprofessionals for services,identifying children in need, andprograms suited best to helpthemwere discussed; theprimary outcome of theincreased awareness in thecommunity had been increasedenrollment of children in schools,improved acceptance of thechildren in daily communityactivities and sports, identi-fication of income-generatingschemes for the affected,ensuring that an interpreter isavailable at the clinics to help theparents to communicate withthe health staff, and increase inmembership

— —

Miles60 Pakistan The review reports on community-based rehabilitation programsand school-based programs andsurveys carried out amongcommon people andprofessionals about awarenessregarding disabilities; inadequacyof quality research and poordissemination of availableresearch due to lack of fundswere cited as some of thecommon issues affecting properservice development

— —

Mittler63 Developingcountries

It was felt thatmere identificationof cases, especially those at risk,was not sufficient andmoreneeded to be done to provideassistance to those in need in thewider context of serviceprovision and education; theimportance of developingmanpower and involving thefamily was also stressed in theworkshop

The Portage guide to hometeachingwas highlightedwherecommunity workers went intohomes to identify short-termgoals andmeans of achievingthem using simple language andplay skills and improvedmeansof communication and socialcommunication; the objectivesspanned 1–2wk andweremodified after theywerereached

—

Nair and Radhakrishnan67 India The review focuses on early childcare and development programslike the Integrated ChildDevelopment Service and UrbanBasic Services; it highlightedsome of the problems faced bythese programs: inadequate

Some of the activities that facilitatechild development were infantstimulation, creation of referralservices, community-basedidentification and intervention incases with developmental delay,creation of well-infant clinics and

Discusses the issues of targeting deprivedurban children, especially the girl child,through national- and state-levelactions; it also highlights theimportance of the Integrated ChildDevelopment Scheme and nationaleducation programs that strive to




funds and infrastructure, poorlytrained staff, absence of pro-grams for those�3 y of age, lackof community participation andownership, and inability todetect cases early in life

community-owned early childdevelopment clinics, screeningof toddlers and preschoolscreening, child-to-childapproach, primary educationenhancement program, andidentification ofmentalsubnormality in primary schoolchildren

provide free education to all children�14 y of age

Olusanya31 Nigeria — Early identification of hearingimpairment in childrenwithbetter seating arrangements forthem in order to provide aquieter atmosphere andproximity to the teacher’s deskwere suggested; different toolsto amplify soundwere alsosuggested

—

Pal et al47 India Some of the services that wereidentified to improve thecondition of childrenwithdisabilities were development ofparent groupmeetings andoutings to discuss commonissues, using drama as ameansof interactingwith students inclass, holding different socialevents for childrenwith dis-abilities to express themselves,and interactingwith villagecouncils, teachers, and theelderly and involving them indecision-making

— —

Paul et al92 Jamaica There is a community-basedrehabilitation center that takescare of childrenwith disabilities

— —

Qi-hua et al50 China — The need for genetic counselingand improvement of goodsociocultural practices wasoutlined

—

Ran et al70 China Rehabilitationwas formally startedonly in the 1980s; Chinese Unionof the Handicappedwas formed,and later a rehabilitation sectionwas created in theMinistry ofHealth; a survey had found alarge number of people withuntreatedmental illnesses whowere beingmistreated; com-munity-based rehabilitationincorporates shelteredwork-shops, civil administrationbureau, medical bureau, Unionof the Handicapped, CommunityBased RehabilitationMinistry,and community hospital; thegovernment set up a “welfarefactory” on each street thatserved as a rehabilitation center;these centers provided shelter,medical examination, food,training in hygiene, and skills fordaily living; basic education andvocational trainingwas also

— —




provided; theywere oftenemployedwithin the factory; thesupervisors had experience inmedicine and teaching

Replogle111 Guatemala Although theMinistry of PublicHealth in Guatemala is workingto set up early-detectionsystems, health workers andadvocates for the disabled saymany child disabilities aredetected late, which can limitoptions for treatment andrecovery; becausemost births inrural areas are conducted bypoorly trainedmidwives, a largenumber of cases of disability goundetected at birth; there aresome centers that cater to theneeds of the disabled, but theyare few andmostly around thecapital; there is a lack ofknowledge among thepopulation about disability andlack of coordination betweenhealth and education; 2005wasthe year of the disabled inGuatemala; the referral systemneeds streamlining

— —

Richmond et al85 Developingcountries

Improvement of services andfinancing sectors is required;services should be coordinated;training of staff both in technicalandmanagerial setups should beimproved; important criteria forgood services are community-based and primary-care–basedservices, interdisciplinaryinteraction, uniform distributionof staff across rural and urbansettings, national andinternational programs tailoredto local needs, development ofprofessional andmanagerial skillsat local level, development ofnational policies based on aprevention strategy, use ofexpertise fromUnited Nationsbodies wherever required, anddevelopment of programs thatare not only cost-effective butalso easily measurable andevaluated

— —

Shah68 Developingcountries

Involvement of family andcommunity in services related tomanagement of disabilities isessential; intersectoralcollaboration is required, as iscollaboration between differentnational and international bodies

The review highlights some of theprimary prevention strategies,especially because tertiary care iscostly and often not easilyaccessible; moreover, there isshortage of trained staff; somewell-tested community-basedpractices were home-basedmethods tomonitor pregnancylikematernal charts, partographs,fetal movementmonitoring,nutrition ofmother, identifying

—




risk factors inmothers that canlead to disabilities in children,growthmonitoring, card toidentify home risks, card tomonitor child’s psychosocialdevelopment, and identificationof neonatal jaundice; the need toprovide trained birth attendantsskills tomanage problems likebirth asphyxia and developmentof appropriate parenting skills isimportant; programs like SafeMotherhood needs encourage-ment; the review also high-lighted the importance ofintersectoral collaboration inmanagingmalnutrition anddisability

Simeonsson86 Developingcountries

Services need to be based onepidemiologic findings, culturaland definitional norms asaccepted in the country, andpresence of proper screeningtools

Primary prevention strategies couldinvolve identification of riskfactors in children and parentsand promote parenting skills;secondary prevention couldinvolve reduction of disability byteaching new skills to the child orhelping the family to addressissues related to problems faceddue to their child’s disability;tertiary prevention could involvecorrective/augmentativemeasures for the child’simpairment and improvingfamily relationships, values, anddynamics

The health policy should be geared tomanage different infant andmaternalhealth issues that lead to reducedmortality andmorbidity in a stepwisemanner depending on the countries’health condition

Sonnander and Claesson69 China Community-based practices andspecial education facilities forthose affected are alsoencouraged; more family-oriented research is required

Genetic screening, immunization,iodine supplementation, andprenatal and postnatal care aresome of the common preventivemeasures suggested

Different legislation and national policiesare geared toward supportingpopulation affectedwith some disability

Tao61 China Some of the services availableinclude community-basedrehabilitation provided by socialwelfare institutes andeducational programswithinnormal schools and schools forchildrenwith disabilities;occupational therapy stations arealso present

— —

Thorburn83 Jamaica Family responses depended onmany factors; many still believedin supernatural causes, especiallyamong old people and thosewith low education; they alsohavemisconceptions aboutavailable treatments butgenerally are convinced aboutsome treatment althoughpriorities are low; often, childrenlive separate from their parents,and father living away from thechild affected the acceptability ofthe child in the society; child-rearing practices like punishmentand negative feedback were not

— —




useful; even information givenby professionals was found to beinadequate and created anegative impact on the overallattitude and practices of parents

Wirz and Lichtig71 Developingcountries

Services are inadequate and variesfrom fewwell-equipped centersin large cities to poorly equippedto absent centers in smallertowns and villages; generally theservices follow amedical model;however, some home-basedprograms to assist parents inteaching childrenwith hearingimpairment have beenimplemented in India andJamaica; community-basedservices are not adequatelydeveloped, and use ofnonspecialists is limited

— —

Yousef72 Developingcountries(primarily)amongArabcountries

The first schools were set up inCairo and Baghdad in 1958;education of childrenwithintellectual disabilities is undertheMinistry of SocialDevelopment; education isprovided from special schoolsand is not community based;there is no appropriatelydeveloped curricula; formalteacher training is not welldeveloped; there is no accepteddefinition ofmental retardationand no good assessment tools

The importance of increased publicawareness of disabilities andearly detection andcommencement of specialeducation for childrenwithintellectual disabilities wasencouraged

Legislation to protect the right of childrenwith intellectual disabilities and providespecial education is needed; nationalpolicies should provide integratedschooling facilities for childrenwithintellectual disabilities

— indicates that data were not available.


APPENDIX2

Qua

litativean

dQuantitativeInform

ationon

Epidem

iologicStud

ies

Article

Coun

try

Metho

dEpidem

iology

SSAD

,%ND,%

ID,%

VD,%

HD,%

SD,%

MD,%

al-Ansari12

Bahrain

RD:cross-sectionalhousehold

survey

tostudynational

morbidity

SP:com

munity

ST:questionnaireon

the

patternofUSHousehold

Survey

About4.5%(2672)ofthehouseholds

inBahrainwere

sampled

usingaquestionnairesim

ilartotheUS

HouseholdSurvey;totalpopulationwas11

521,of

which

5938

werechildrenandadolescents(0–19

y);questions

wererelatedtotype

andcauseof

disability;thequestions

wereansw

ered

bythe

head-of-h

ousehold,and

thedisabled

person

was

notinterview

ed;altogether,26children(aged

0–19

y)sufferedfromsomedisability,andthe

prevalence

ratesvariedaccordingtoageand

gender;inthe0-to9-y-oldgroup:male,0.4%

;female,0.3%

;and

inthe10-to19-y-oldgroup:

male,0.6%

;fem

ale,0.4%

;intellectualdisabilitywas

common,and

birth

traum

aandinfections

were

common

causes

5938

0.4

——

——

——

al-Ansari49

Bahrain

RD:case-controlstudy

tostudytheriskfactorsfor

mild

intellectualdisability

SP:specialschools

ST:adapted

versionof

American

Associationon

MentalRetardation

AdaptiveBehaviorScale

Casesw

ereselected

fromaspecialschoolfor

handicappedchildren;ofthetotal,47.7%were

male;meanagewas9.5y;prenatalcauseswere

responsib

lefor38.5%

ofmild

mentalretardation;

othercauseso

fmentalretardationwereDow

nsyndrome(14.7%

),aperinatalcause(11.9%

),postnatalcause(7.4%),andunknow

netiology

(42.2%

);lowsocioeconomicstatus,consanguinity,

illiteracy,and

familyhistoryofmentalretardation

wereassociated

with

beingacase

109

——

——

——

—

Arensand

Molteno

38SouthAfrica

RD:cross-sectionalstudy

toassesstheprevalence

ofpostnatally

acquired

cerebralpalsy

inchildren

(�13

y)SP:hospitals,clinics,and

specialschools

ST:none

Prevalence

ofcerebralpalsy

indifferentethnic

groups

was2.2%

(whitepopulation),2.9%

(colored

population),2.1%(blackpopulation);

cerebralinfectionwasthecommonestcause

followed

byhead

traum

a;spasticity

wasthe

commonestcom

plication;almosta

third

ofwhite

andcoloredchildrenhadsevereorprofound

intellectualdisability,andalmost50%

ofblack

childrenhadsevereorprofound

intellectual

disability

588

——

——

——

—

Bashiretal52

Pakistan

RD:prospectivecohortstudy

toassesstheprevalence

ofmild


SP:com

munity

ST:W

echslerIntelligence

ScaleforChildren,Griffith’s

MentalDevelopment

Scale,TQ

Pregnantwom

enwereregistered

atan

earlierperiod

oftim

e,andbaselinedatawerecollected

about

them

;oncetheirchildrenreached4–6yofage,

they

wereincluded

inthestudy,andintellectual

capacitywasascertained;the

childrenwere

evaluatedusingstandardized

toolsand

byphysicians;blood

testsw

ereconductedtoassess

metaboliccauses;highestprevalence

ofmild

intellectualdisabilitywasintheperiurban

and

urbanslu

mareas;speech

impairm

entw

asthe

mostcom

mon

associated

problem

649

——

6.2

——

——


Bastos

etal26

Tanzania


whereschoolchildrenwere

assessed

forhearing

impairm

ent

SP:com

munity

ST:electronicinstrumentto

assesshearing

Schoolchildrenfrom1urbanand1ruraldistrictw

ere

chosen

toassesshearingimpairm

ent;3urbanand

5ruralschoolswerechosen;the

childrenwere

aged

between6and13

yinurbanschoolsw

ith47%ofthestudentsbeingboys;the

agerangein

ruralschoolswas6–16

yand58%ofthem

were

boys;battery-driven

screeninginstrument

wasused

toassesshearing;bilateralloss

854

——

——

3.0

——

was10.5%inurbanschoolsand

4.7%

inrural

schools;impairm

entincreased

with

ageandwas

morecommon

inurbangirls

than

boys(girls/boys,

�5:3),although

nodifferencewasseen

inthe

ruralpopulation;middle-earinfectionwas

common

Benderetal88

Bolivia


basedon

asubgroup

from

alargerWHOstudyon

breastfeeding

SP:com

munity

ST:BayleyScalesofInfant

Development

Asubgroup

ofinfantsaged6–18

mowereincluded;

they

werefromalargergroupofmothersinvolved

inabreastfeedingandchild-spacing

research

oftheWHO;probabledevelopm

entaldelay

was

foundin20%ofthesubsam

ple

30—

——

——

——

Bergetal13

Bangladesh


that

aimed

tofindsim

ple

screeningtoolsforchildren

with

hearingimpairm

entin

thecommunity

SP:com

munity

Community

healthworkersadministered

2screening

toolsto2samplesofchildreninruralsettings;the

ageofthechildrenvariedbetween2and9y;in

thefirstscreen

usingaudiom

etrytherewere4003

children(m

edianage:5y)andinthesecond

grouptherewasasubsam

pleof569children

4003

——

——

——

—

ST:Conditionedplay

audiom

etryand

otoacoustic

emissions/

tympanometry

(medianage:3y);inbothgroups,alittle

more

than

50%wereboys;bothgroups

were

comparableform

aternaleducation(�

65%

uneducated,�

11%with

morethan

primary

education,literacy

�35%);

�50%werefarm

ers;

medianmaternalage

wasjustabove30

y;consanguinity

was7%

–9%;usin

gtheConditioned

Play

Audiom

etry,1.6%werereferredforfurther

checkup;childrenwho

didwellontheotoacoustic

emissionwerenotgiven

thetympanometrytest;

although

Conditioned

Play

Audiom

etrywasa

usefulscreeningtoolam

ongtheolderchildren

(age

6–9y),otoacousticem

ission/

tympanometrywasespeciallyusefultoidentify

hearingimpairm

entamongtheyoungergroup

(2–5

y),although

itwasalso

beneficialasa

second-stage

screeningtoolforthe

olderchildren


APPENDIX2

Qua

litativean

dQuantitativeInform

ationon

Epidem

iologicStud

ies

Article

Coun

try

Metho

dEpidem

iology

SSAD

,%ND,%

ID,%

VD,%

HD,%

SD,%

MD,%

BhatiaandJoseph

39India


ofdisabilitiesamongchildren

with

cerebralpalsy

SP:clinicbased

ST:ReceptiveandExpressive

EmergentLanguage

Scale,

BehavioralObservation

Audiom

etry,Vineland

AdaptiveBehaviorscale,

Binet-KamathTest,

BrainstemEvoked

Responseforhearing,

differentophthalmictests,

EEG,genetic

andmetabolic

diagnostics,teststoasses

orthopedicproblems

Recordso

f100

childrenfromcerebralpalsy

clinics

werecheckedfordisabilitiesand

intervention;age

ranged

between1and18

y(m

ean:6.9y)with

male/female

�1:6;spastic

diplegictype

ofcerebralpalsy

waspresentin68%;parentswere

awareofthegrossd

isabilitiesb

utwerenotaware

ofvisualdisabilitiesintheirchildren

100

—27.0

40.0

54.0

7.0

36.0

—

Biritwum

etal90

Ghana


toassessprevalence

and

causesofchildhood

disability

SP:com

munity

A2-stageclustersam

plingwasdone

in1region

ofGh

ana;bothruraland

urbancommunitieswere

random

lyselected;childrenaged

0–15

ywere

included

inthestudy;therewasan

almostequal

numberofm

aleandfemalechildren,andthose

2556

1.8

—0.2

0.4

0.5

0.5

0.6

ST:householddisability

questionnaire

fromaruralcom

munity

weretwicethatfroman

urbancommunity;disabilityvariedaccordingto

age:1–5y(1.4%),6–9y(1.7%),10–15y(0.4%);

therateam

ongtheruralpopulationwas2%

,and

thatintheurbanpopulationwas1.5%

;inadequate

immunizationratewasoneofthecommonest

causesofdisability,andthecommonesttypewas

hearingandspeech

problemsfound

in26%ofthe

childrenwith

disability;infections,vitaminA

deficiency,andbirth

injuriesw

erecommon

etiologicfactors;

�30%ofchildrenreported

feelingdiscrim

inated

againstinthesociety

Chen

and

Simeonsson1

4

China

RD:cross-sectional

population–basedsurvey

over29

provincestoassess

disability

SP:com

munity

ST:none

Theprevalence

ofanydisabilitywas2.9%

(males)and

2.5%

(females);thecausesfordisabilitywere

unknow

n(47.2%

),prenatalcauseslikeinfections,

consanguineous

marriage,inheriteddisease,

drugs,andmedicines(20.9%

),perinatalbirth

-relatedcomplications

(2.5%),andpostnatalcauses

likeinfections,m

alnutrition,tumors,andaccidents

(29.3%

);am

ongthedifferenttypeso

fdisabilities,

66%wereintellectualand

14%werehearing

12242

2.7

—1.8

0.1

0.4

—0.2


Chen

and

Simeonsson4

4

China


toassesstheneedso

ffam

ilies

ofchildrenwith

disabilities

SP:fam

iliesofchildrenwith

disabilities

ST:AbilitiesIndex,Fam

ilyNeeds

Survey

Urban

andruralfam

ilieswith

childrenwith

some

impairm

entw

ereselected

forthe

study;they

were

selected

eitherfromthelocalschoolforchildren

with

impairm

entorfromthecommunity

after

initialidentificationofthechildren;the

instrumentswereadministered

tothecaregivers;

thecaregiversconsisted

ofparents,grandparents,

relatives,and

others;60%

wereboys;agesranged

from0–13

y;thechildrenfromtheruralsetting

hadmoredisabilities,andthelevelofeducation

andeconom

ywaslowerintheruralsetting;

comparedtotheruralfam

ilies,the

urban

familiesexpressedmoreneed

forcom

munity

101

——

6.0

2.0

62.0

—22.0

support,familysupport,professio

nalhelp,and

bettercoordinationwith

teachers;ruralfamilies

expressedmoreconcernaboutchildhealth,

finance,m

arriage,and

education,andurban

familiesshow

edmoreconcernaboutfuture

employmentopportunities;bothgroups

received

equalfam

iliysupport,butthe

ruralcom

munity

received

moregovernment,neighbour,and

welfaresupport;comparedtostudiesd

oneinthe

UnitedStates,thisg

roup

wasmoreconcerned

aboutidentifyingproperprofessio

nalsupportand

financialassistance

Christianson

etal15

SouthAfrica


survey

tostudythe

prevalence

ofintellectual

disability

SP:com

munity

ST:TQ,Griffith’sScaleof

MentalDevelopment,

visualandauditoryclinical

assessmentm

easures

Thehouseholdsurvey

included

2-to9-y-oldchildren

from8villages;therewasa2-phasescreening;

initialscreeninginvolved

usingtheTQ

,followed

byapediatric

assessmentusin

gGriffith’sScaleand

othervisu

alandauditoryassessments;m

ost

childrenwereborninhospitals/clinicsw

ith�20%

bornathome;phaseIscreened6692

children

andphaseIIscreened

722children;intellectual

disabilityofseveretype

waspresentin0.6%

and

mild

type

in2.9%

;�60%weremale,although

the

commonestcauseforintellectualdisabilitywas

congenitaldiso

rders,60.5%wereofunknow

netiology;com

monestcom

plications

wereepilepsy

(15.5%

),cerebralpalsy

(8.4%),andauditory

disability(7.1%)

6692

——

3.6

——

——

Couper

79SouthAfrica


toassessdisabilityinchildren

inaparticulardistrict

SP:com

munity

ST:m

odified

versionofTQ

with

6additionalquestionsto

enquire

about�

2y

developm

ent

Specificareasw

erechosen

basedon

criteria;children

�10

yofagewereincluded

andinitiallyscreened

forany

type

ofdisabilityusingthescreening

questionnaire;thosescreeningpositivewere

furth

erassessed

bytherehabilitationspecialists;a

subsam

plewasreinterviewed

forvalidation;about

halfoftheaffected

childrenweremale;prevalence

2036

6.0

4.7

—0.2

2.0

2.4

2.8


APPENDIX2

Qua

litativean

dQuantitativeInform

ationon

Epidem

iologicStud

ies

Article

Coun

try

Metho

dEpidem

iology

SSAD

,%ND,%

ID,%

VD,%

HD,%

SD,%

MD,%

increasedwith

age:2%

(0–2

y),4.8%(2–5

y),and

6.3%

(5–9

y);neurocognitive

disabilitiesand

hearingdisabilitiesw

eremostprevalent

Dattaetal16

India


toassessthelevelofburden

amongcaregiversof

childrenwith

intellectual

disabilityinan

Indian

setting

SP:childrenwith

intellectual

disabilityandtheir

caregivers

ST:BinetKamatScaleof

Intelligence,Gessell

DevelopmentSchedule,

Vineland

SocialMaturity

Scale,FamilyBurden

InterviewSchedule,

DSM

-IV

Participantsw

ereprimarycaregiversofchildrenwith

intellectualdisabilityattendingatertiarycenterin

agivenlocality;thechildrenhadtobe

diagnosed

with

intellectualdisabilitybasedon

different

instrumentsandDSM

-IVcriteria

andnothaveany

otherpsychiatriccomorbidity;the

parentsw

ere

interviewed

regardingburden

andexpressed

emotionwithin2wkofenrollm

entinthestudy;

they

werealso

askedtoratetheprognosis

oftheir

child’simpairm

ent;of98

childrenidentified,31

couldbe

included

andassessed;the

childrenwere

all�

16yofageand22

of31

wereboys;in19

childrenthemotherw

astheprimarycaregiver

included

inthestudy;high

expressedem

otion

wasassociated

with

increasedburden;burdenwas

moream

ongthepoor;com

mon

areaso

fburden

werefinancial,lackoffamilyinteractionandleisu

reactivity,disruptionofroutine,andburden

dueto

effecton

physicalandmentalhealth

ofothers;

statisticallynonsignificantassociationwasfound

betweenburden

andincreasin

gageofchild

and

perceivedprognosis

31—

——

——

——

Daveetal17

India


toidentifyscreeningfacilities

andappropriateservicesto

reduce

genetic

causesfor

disabilities

SP:com

munity

ST:differentscreening

tools

toassessgenetic

problems,

instrumentstomeasureIQ

Acommunity

wasscreened

andcasesreferredtothe

genetic

counselingclinicforconfirmation;am

ong

genetic

causesthemostcom

mon

wereDow

nsyndrome(64%

)and

metabolicdisorders(23%);

environm

entalcausesincludedpregnancy-related

complications

likeinfections

(9.0%),lowbirth

weight(8.6%

),andbirth

asphyxia(8.4%);

consanguineous

marriage

wascommon

550000

——

0.1

——

——

Durkin5

9Developing

countries

RD:overviewofdifferent

research

methods

like

surveys,useof

administrativedata,and

2-phasescreening

SP:com

munity

ST:none

Theimportanceofappropriatestudypopulationand

criteria

fordefining

disabilityisstressed;the

study

also

review

edthedifferentriskfactorsassociated

with

disabilitiesindeveloping

countries

——

——

——

——


Durkinetal18

Pakistan

RD:cross-sectionalsurveyto

assessmentalretardation

SP:com

munity

ST:TQ,StanfordBinet

IntelligenceTest

2-phaseclustersam

plingofhouseswasdone,and

all

childrenaged

between2and9ywithinthe

selected

community

wereincluded;alittle

over

halfweremale;thosescreeningpositiveinthefirst

phaseandaselectionofthosescreeningnegative

werereview

edby

aclinicianandadiagnosis

ofintellectualimpairm

entw

asreachedby

consultationbetweenacliniciananda

psychologist;the

diagnosis

wasbasedon

establish

edcriteria;90childrenhadsevere

impairm

ent,and140hadamildertype

ofimpairm

ent;morethan

halfofthosewith

serious

impairm

enthad

otherdisabilitiestoo;higher

prevalence

wasseen

inruralpopulation,am

ong

childrenwith

mothershaving

lesseducation,

consanguineous

marriage,historyofgoiterin

motherorchild,poorantenatalandpostnatalcare,

lowimmunization,andperinatalcomplications

likeinjuriesand

infections

6365

——

3.6

——

——

GomesandLichtig

34Brazil

RD:cross-sectional

community-based

study

assessinghearing

impairm

ent

SP:com

munity

ST:parent-report

questionnaireused

bynonprofessionalstoassess

hearinglossand

audiom

etry

Respondentsincludedparentso

fchildrenaged

3–6

y;theirchildrenweregivenan

audiom

etric

assessment;thequestionnairewasfoundtobe

effective,and14

of33

questions

hadasig

nificant

concordanceratebetweencommunity

workers

andresearcher;conductivedeafnessofvarying

intensitieswasthemaintype

ofdeafness

identified

133

——

——

9.0

——

Gopaletal84

Mauritius

RD:cross-sectional

assessmentofrisk

factors

forhearingimpairm

ent

SP:com

munity

ST:questionnaireaddressed

toparentstoreport

hearingimpairm

entin

theirchildren

Childrenwith

hearingimpairm

entat70dB

were

identified

throughan

administrativedatabase,and

theirparentswereapproached

forrespondingto

thesurvey

questionnaire;�

65%ofchildrenwere

male,45%wereprimaryschoolchildren,and

51%weresecondaryschoolchildren;high

risk

indicatorswerepresentin54%ofchildren,and

21.6%hadafamilyhistoryofhearingimpairm

ent;

maternalhistoryofrubella

infectionwaspresentin

18.9%

37—

——

——

——

Grantham

-McGregor

etal46

Jamaica

RD:case-controlw

ithmultiple

armso

finterventionto

studytheeffectof

nutritionalsupplem

enton

stuntedgrow

thSP:com

munity

ST:Griffiths

Mental

DevelopmentScale

Childrenaged

9–24

moand2SD

sbelow

norm

allengthweredividedinto4groups:contro

l,on

supplement,on

stimulation,andon

supplement

andstimulation;afifthgrouphadalmostnormal

grow

th;the

stimulated

groupincluded

1h/wktrainingofmotherstoplay

with

their

childrenusinghomem

adetoys;the

supplement

groupwasprovided

milkbasedform

ulation;

physicalmeasurements,IQofboththechild

and

129

——

——

——

—


APPENDIX2

Qua

litativean

dQuantitativeInform

ationon

Epidem

iologicStud

ies

Article

Coun

try

Metho

dEpidem

iology

SSAD

,%ND,%

ID,%

VD,%

HD,%

SD,%

MD,%

mother,socioeconomicstatus,and

a24-hdietary

recall(doneat2d,6mo,and15

mo)were

recorded;the

studylasted

for2

y;assessment

wasdone

with

respecttodevelopm

entquotient,

hearing,hand-eye

cordination,motor,locom

otor,

andperform

ance;stim

ulationhadsig

nificant

effecton

developm

entquotientandallother

parameterslikemotor,hand-eye,hearing

andspeech,locomotor,and

performance;

supplementationhadeffecton

developm

ent

quotient,locomotor,and

performance;useofboth

hadbestresultsaftercontrollin

gforconfounders;the

effectofsupplementationwasdelayedbuthad

amoresustainedeffectlateron,whereastheeffectof

stimulationwastheopposite

Gustavson5

3Pakistan

RD:12-ycohortstudytoassess

causesofintellectual

disabilities

SP:com

munity

ST:none

Allpregnantw

omen

withinaspecified

periodand

residingin4selected

urbanandruralslumareas

weremonitoredfromtheirfifth

monthofpregnancy;

thechildrenwereclo

selyfollowed-upfrombirth

until

theageof12

y;thechildrenwereexam

ined

every

third

monthup

totheageof6yandsubsequently

twice

ayearuntiltheageof12

yby

pediatricians,

psychologists,andsocialw

orkers;prevalenceofmild

mentalretardationwas6.2%

,and

thatofsevere

mentalretardationwas1.1%

;perinatalmortalitywas

54in1000;infantmortalitywas10%,and

increased

riskw

asnotedinconsanguineousmarriage,lowbirth

weight,andpasthistoryofinfantdeath;seriousbirth

defectsw

erepresentin5.6%

,the

commonestbeing

neuraltube

defects;psychomotordevelopm

entw

asmoredelayedam

ongthepoor(meantim

etowalk:

15mo)comparedtotherich(meantim

etowalk:

12mo)

1476

——

2.8

——

——

Ham

adanietal56

Bangladesh

RD:RCT

tostudytheeffectof

antenatalzincsupplem

en-

tationon

infantdevelop-

mentand

behaviorat13

mo

ofage

SP:com

munity


Developm

ent,Caldwell

HomeInventorytoassess

stimulation;behavior

assessed

byamodified

versionofascaleby

Wolke

559pregnantwom

enwererandom

lyassig

nedto

receivezinc

oraplacebofrom4mogestationon

wards

andthedevelopm

entofthe

infantsw

asmonitoreduntil13

moofage;120random

lyselected

childrenfromeach

groupwerefollowed

up;zincsupplementationhadaworseeffecton

developm

entand

behavior;although

the

differencewassm

all,itremainedsig

nificant

240

——

——

——

—


Ham

adanietal57

Bangladesh

RD:RCT

tostudytheeffectof

zincsupplem

entationon

infantdevelopm

entand

behavior

SP:com

munity


Developm

ent,Caldwell

HomeInventorytoassess

stimulation;behavior

assessed

byamodified

versionofascaleby

Wolke

Aftera

house-to-housesurvey

of3slu

mareas,infants

aged

4wkwererandom

lyassig

nedtoreceive

zinc

supplementsoraplacebo;they

weregiven

supplementsfor5

moandmonitoreduntil13

mo

ofagetoassessneurobehavioraldevelopment;

theresults

show

edthatchildrenon

placebofared

better

301

——

——

——

—

HartleyandWirz

82Nigeriaand

Uganda

RD:cross-sectionalqualitative

studyassessing

communicationdisability

SP:com

munity

ST:none

Datawerecollected

overaperiodof3yinavariety

ofresearch

settings

using5separatestudies;

included

participantobservation,surveys,

semistructured

interviews,focusg

roup

discussio

ns,fieldnotes,andreflectivediaries;the

studyinterviewed

professio

nals,disabled

people,

parents,andcommunity

mem

bers;therewere

166subjectsfromNigeriaand1206

fromUganda;

inform

ationwasgathered

onservicesand

practices,knowledge,attitude,andpractice

regardingcommunicationdisabilitiesand

prevalence

estim

ates;acommunicationdisability

modelwasdeveloped;thediscussio

nhighlighted

therolethateach

stakeholdercan

play

inimprovingtheconditionsforpeoplewith

communicationdisability

1372

——

——

——

—

Hartley8

9Uganda


toestim

atetheprevalence

ofverbalcommunication

disabilityandits

impli-

cations

forservicesamong

childrenwith

some

disability

SP:com

munity

ST:averbalcommunication

questionnaireadapted

fromtheTQ

Amongthoseresponding

tothequestionnaire,57%

wereboys;w

ithineach

type

ofdisability,verbal

communicationwasaffected,and

overallalmost

halfthechildrenhadsomeform

ofproblem

1041

——

18.3

12.5

19.7

49.4

62.2

Hatcheretal

27Kenya

RD:cross-sectional

assessmentofhearing

impairm

entamong

primaryschoolchildren

SP:com

munity

ST:Liverpoolfieldaudiom

eter

Primaryschoolchildrenfrom57

schoolsw

ere

included

inthestudy;ageranged

from5to21

y(53%

were10–14y);besidesquestions

relatedto

socioeconomicstatus,the

childrenwerephysically

exam

ined

andhearingwasassessed

usingan

audiom

eter;w

axintheearw

asthecommonest

cause(8.6%)

5368

——

——

5.6

——


APPENDIX2

Qua

litativean

dQuantitativeInform

ationon

Epidem

iologicStud

ies

Article

Coun

try

Metho

dEpidem

iology

SSAD

,%ND,%

ID,%

VD,%

HD,%

SD,%

MD,%

Izuora

54Nigeria

RD:4-ycohortstudy,using

prospectiveandretro

-spectivedata,toassess


disability

SP:pediatricneurologyclinic

Childrenfromapediatric

neurologyclinicwere

included

inthestudy;differentlaboratory,

radiologic,and

electro

physiologicaltestswere

done;atotalof291

childrenwith

mental

retardationwereidentified,ofw

hich

172were

male;they

werefollowed

upfor4

y;ages

291

——

——

——

—

ST:DenverD

evelopment

ScreeningTest,Drawa

Person

Test

ranged

from0to15

y;commonestcausesw

ere

acquired(44%

),congenital(33%),andidiopathic

(23%

);commonestcongenitalcausewasDow

nsyndrome;birth

traum

awasthemostfrequent

acquiredcause(59.4%

)followed

byneonatal

jaundice

(19.5%

)Keeffeetal81

Developing

countries


onvalidationofscreening

toolsforvisualimpairm

ent

SP:clinicbasedandspecial

schoolsfortheblind

ST:visu

alacuitytestcard,

pinholemask

TheE-testwasfoundtohave

good

sensitivityand

specificityinstudiesconducted

acrossdifferent

developedanddeveloping

countries

——

——

——

——

Kello

andGilbert41

Ethiopia


toassesscausesofvisual

impairm

entinchildren

SP:specialschoolsforthe

blind

ST:SnellenE-type

optotype

3schoolsfortheblindwereselected,and

of360

students,232

weremale;while11

studentshadno

visualimpairm

ent,36

hadsomeform

ofvisual

impairm

entbutno

blindness;childhood

factors,

mainlyvitaminAdeficiencyandmeasles,

accountedforalmost50%

ofthecases,butin

almost45%

thecausewasunknow

n;avoidable

causesofvisuallosswereidentified

in68%of

children

360

——

——

——

—

Khan

etal55

Bangladesh

RD:3-yprospectivecohort

studyofchildrenwith

cerebralpalsy

todeterm

ine

theiroutcome

SP:cerebralpalsyclinic

ST:IndependentBehavior

AssessmentScale

Childrenfromacerebralpalsy

clinicwerefollowed-

upfor3

y;ofthe92

children,49

werefroman

urbansetting,and70%belonged

toalow

socioeconomicstatus;the

agesvariedfrom16

to67

mo;detailedclinicalassessmentw

asdone

bypediatricians;the

type

ofcerebralpalsy

andtype

ofdisabilitywereassessed

byusingstandardized

tools

92—

16.0

83.0

——

——

Kirkpatricketal28

Nepal


totestascreeningtooland

assessprevalence

ofhearingimpairm

ent

SP:com

munity


eter

Childrenfrom4primaryschoolsw

erescreened;the

initialscreeningwasat30

dB,and

thosefailingthat

wererescreened

atthesamefrequencylevelasw

ell

asathigherfrequencies;thosewith

confirmed

hearingimpairm

entw

ereexam

ined

clinically;

rescreeninghelped

toreducethenumberoffalse-

positivecasesofhearingimpairm

ent

309

——

——

7.0

——


Lynetal29

Jamaica


ofhearingimpairm

entin

schoolchildren

SP:com

munity

ST:tym

panometryandpure-

tone

audiogram

Childrenfrom27

publicand5privateschoolsw

ere

screened;ofthe

2202

children,1047

wereboys;

theagesranged

from5to7y;initialscreeningwas

bypuretone

audiom

etryandtympanometry.This

wasfollowed

byclinicalexam

inationforthose

who

failedthefirstscreening.Wax

intheearw

asthecommonestofhearingimpairm

ent

2202

——

——

4.9

——

McConachieetal45

Bangladesh

RD:RCT

thatevaluatedthe

efficacyof3differenttypes

ofservicesform

others

with

childrenwith

cerebral

palsy

SP:clinicbasedand

rehabilitationcenters

ST:IndependentBehavior

AssessmentScale(IBAS),

self-reportquestionnaire,

Judson

Scale,andFamily

SupportScale

Thestudycomparedefficacyofcenter-based

and

minimaloutreachprograms;therewere3study

arms:distance

trainingpackages(DTP),mother-

child

group,andhealthadvice

andnutritional

supplements;the

urbanarmcomparedDTP

with

mother-child,and

theruralarm

comparedDTP

with

healthadvice;IBA

Swasused

tomeasure

children’sadaptiveskills,self-reportquestionnaire

form

aternalstress,JudsonScaleform

aternal

adaptationtothechild,and

FamilySupport

Scaleforperceived

familysupport;qualitative

inform

ationwascollected

onmothers’

experiencesaboutsupporting

theirchildand

reasonsforinadequatefollow-up;agesranged

between1.5and5y;therewere45

urbanand40

ruralchildren;58

childrenwerefollowed-upfor

thewholestudyperiod(9–12mo),and

71%of

them

wereboys;the

urbanparentsfared

better

than

theruralparents,probablyduetotheir

increasededucationlevel;themother-child

group

didthebestalthough

theDTP

wasbeneficialtoo;

therewereconcerns

regardingaccessibilitytothe

DTP

programespeciallyam

ongmotherscoming

tothecentresfromfaraway

85—

——

——

——

McConachieetal37

Bangladesh


studythataimed

tofindthe

reasonsthathinderaccessto

distancetrainingpackage

amongparentsw

ithchildrenwith

cerebralpalsy

TheIndependentBehaviorAssessm

entScalewasused

tomeasurechildren’sadaptiveskills,Self-report

questionnaireform

aternalstress,JudsonScalefor

maternaladaptationtothechild,and

FamilySupport

Scaleforperceived

familysupport;qualitative

informationwasalsocollected

onmothers’experiences

47—

——

——

——

SP:clinicbased

ST:IndependentBehaviour

AssessmentScale,Self-

reportquestionnaire,

Judson

Scale,andFamily

SupportScale

aboutsupporting

theirchildandreasonsfornot

beingabletofollow-upappropriatelywith

the

centers;childrenwerefromruraland

urbancenters

with

ameanageof40.5mo;ruralm

otherswere

youngerand

lesseducated;ruralchildrenweremore

malnourished;fo

llow-upwasmoream

ongmale

childrenandinmotherswho

reportedbeingless

adaptedtowardtheirchild;som

eofthereasonsfor

notbeing

abletofollow-upwerecostoftravel,

householdworkp

ressures,nonpermissiontotravel

alone(especiallyincities),andilln

essofchild


APPENDIX2

Qua

litativean

dQuantitativeInform

ationon

Epidem

iologicStud

ies

Article

Coun

try

Metho

dEpidem

iology

SSAD

,%ND,%

ID,%

VD,%

HD,%

SD,%

MD,%

McConkeyand

Mphole3

5

Lesotho

RD:2

cross-sectional

qualitativestudiestoassess

theneedso

fparentswith

childrenwith

disabilities;

theinitialstudyexplored

thewish

esofparentsfor

theirchildrenandthe

degree

towhich

thosehad

been

fulfilled;thesecond

studyaddressedtraining

needsforparentsand

childreninasubsam

pleof

theoriginalgroup

SP:com

munity

ST:none

68parentsw

ereinclu

dedfroman

associationofparents

with

childrenwith

mentalhandicap;thegroupsizes

werebetween7and16;m

edianageofthechildren

was14

y;aselectionofparents,community

health

workers,teachers,andotherserviceprovidersw

ere

askedaboutthe

need

fortrainingdifferenttypesof

service

providersand

theneed

fortrainingoftrainers

withintheparentgroup;theparentsw

ished

independencefortheirchildren,jobsandschooling

facilities,protectionoftheirchild’srights,andtraining

facilities;creationofparentgroupsandorganizing

village

gatheringswasconsidered

useful;increasing

awarenessw

asidentified

asan

importantthem

e;keythem

esidentified

inthesecond

studywere

improvingparentingskills,raisingaw

arenessw

ithin

thecommunity

aboutacceptanceofchildrenwith

disabilities,andtrainingprofessionalsandteachers

aboutw

aystodealwith

such

children;need

for

greateraccessibilitytocommunity

service

providers

andskills

fortrainingotherparentswashighlighted

68—

——

——

——

McPherson

and

Holborow

19

Gambia


usingbothcommunity-

andclinic-based

sampleto

assesstheprevalence

ofhearingimpairm

ent

SP:com

munity

andclinic

based

ST:none

Samplingwasdone

from8districtsinGambiausinga

nationalsurvey,29

otherdistrictsthroughhospitals

andclinics,11primaryschoolsusingsurveyoverwet

anddryseason,and

individualsw

ithhearing

impairm

entinoutreachruraland

urbanclinics;in

the

nationalsurvey,thehealthteam

screened

allchildren

from2to10

ywho

wereeithersuspectedofsuffering

fromsomehearingimpairm

entorspeechproblem;

thetotalnum

berofchildren(2–10y)inthe8districts

werealmost26000;village

leadersand

health

workersidentified

localchildrenwith

anysuch

problem;the

nationalsurveyidentified

259children

with

severe-to-profoundhearingimpairm

entw

itha

male/femaleratio

of3:2;theincid

enceofsevere-to-

profound

deafnesswas2.7in1000

inthevillage

survey;m

eningitis(31%

)wasthecommonestcause

followed

byrubella,m

easles,andfamilialfactors;

otitism

ediawascommon

amongschoolchildren,

especiallyinthewetseason;�

4000

childrenfrom

hospitalsandclinicswereexam

ined,and

�50%

sufferedfromotitism

edia

32000

——

——

——

—

McPherson

and

Swart73

Sub- Saharan

Africa

RD:overviewofdifferent

studieso

nepidem

iology

andetiology

with

implications

forfuture

research

directions

Studiesinvolvedpopulation-andschool-based

surveys;

thesamplesizesvaried;theprevalenceofdeafness

andsomeindividualpopulationcharacteristicsinthe

differentcountrieswereGambia0.27%(children

aged

2–10

yfromruralpopulation),Nigeria13.5%

——

——

—0.27–

13.5

——


SP:com

munity


etry

(schoolchildren),Sierra

Leone0.4%

(population-

basedsurvey

ofchildrenaged

5–15

y),Angola

2.0%

(schoolchildren),Zimbabw

e3.3%

(schoolchildren),Kenya

2.2%

(schoolchildren),

Tanzania3.0%

(schoolchildren),Swaziland

1.0%

(schoolchildren),and

SouthAfrica7.5–9.2%

(schoolchildren);the

commonestetiologies

weremeningitis,m

easles,maternalrubella,

febrile

illnesses,geneticcauses,and

alargepro-

portion

ofunknow

netiology;the

need

form

ore

epidem

iology

studies,especiallycommunity-

basedsurveys,studieso

nculturalhealing

practices,useofsystem

aticresearch

methods

andstandarddefinitionstodefinehearing

impairm

ent,anduseofgood

instrumentsto

assesshearinglosswereem

phasized

Mittler6

3Developing

countries

RD:reviewofworkshop

proceeding

ondifferent

epidem

iology

andservices-

oriented

activity

asapplicabletodeveloping

countries

Issueslikedevelopm

entofsimplescreeningtools

thatcouldbe

used

bylayworkerscomparedto

morespecifictoolsthatw

ouldlead

tolowerfalse-

positivecasesb

utinvolvetrained

interviewersw

asunderlined

——

——

——

——

SP:com

munity

ST:none

Mutua

etal36

Kenya


studythatassessed

the

discrepanciesinconcepts

thatparentsw

ithchildren

with

disabilitiesh

adabout

existingservicesandtheir

expected

use

SP:com

munity

ST:parentswerequestioned

about8

differentphysical

andhuman

resources

availableinthecommunity

inaparent-appraisalscale

Thestudyincluded

familiesofchildrenwith

disabilitieslikedifferentlevelsofintellectual

disabilities,hearingandvisualproblems,and

autism;ofthe

351children,64%wereboys;

2ruraland

2urbandistrictswereselected;

differentsupportopportunitieslikehealth,

education,friend,husband/wife,religion,

acceptance,employment,andhomewere

scored

accordingtoexpected

useandimportance;

therewasamatch

betweenexpectations

and

importanceforhealth,friend,religion,acceptance

inacommunity,and

home;educationand

employmentw

erethoughttobe

importantbut

underutilized;parentsfeltthathaving

aspousefor

theirchildwasimportant,butmostfeltthatthe

malechild

wasunlikelytohave

aspouse;itw

asfeltthatgirls

wouldbe

moreunlikelytoutilize

employmentopportunities;manyparentsfeltthat

theirchildrenwouldrequire

specialeducationand

on-jobtrainingtobe

accepted,although

research

hasshownresults

tothecontrary

351

——

——

——

—


APPENDIX2

Qua

litativean

dQuantitativeInform

ationon

Epidem

iologicStud

ies

Article

Coun

try

Metho

dEpidem

iology

SSAD

,%ND,%

ID,%

VD,%

HD,%

SD,%

MD,%

Nairand

Radhakrishnan

67

India

RD:reviewon

etiology

ofdevelopm

entaldelayand

evaluationofearlychild

care

anddevelopm

entprogram

sSP:com

munity

ST:none

Itdiscussesthe

biologicaland

environm

entalrisk

factors

thatcausedelayeddevelopm

ent,likelowbirth

weight,perinatalcomplications,antenatal

complications,etc

——

——

——

——

Nasiretal51

Afghanistan


toassesscausesfordifferent

typeso

fdisabilityin

childrenattendingaclinic

SP:childrenattendingaclinic

ST:none

Childrenattendingaclinicw

ereassessed

fortypeof

disabilityandprobablecausesofdisability;controls

wereageandgendermatched

andwererandom

lyselected

fromaregisterofthesamecommunity;the

agesvariedbetween0and15

y;childrenwith

cerebralpalsy,m

entalretardation,andmotor

disabilitywereinclu

ded;parentsw

erenarrated

detailedsymptom

sofconditionsthattheymight

havebeen

affected

with

duringpregnancythatcould

haveledtothedisabilityinthechild

andwereasked

torespondtosymptom

sthattheycouldidentify;

basedon

those,aprobablelistofetiologicfactors

wasdeveloped;someofthecommon

causesfor

such

disabilitywerefamilyhistoryofdisability,

pregnancy-relatedcomplications,lowbirth

weight,

birth

traum

a,infections,psychologicalproblem

s,andconsanguinity;consanguinitywashigh

(46%

);illiteracyam

ongthemotherswas97%,and

antenatalcarewasavailableforonly22%ofmothers

633

——

——

——

—

Nataleetal20

India


toascertaintheprevalence

ofdisabilityam

ongchildren

SP:com

munity

ST:Tam

ilversionoftheTQ

2groupsoffamiliesinthelowest2

econom

icclasses

werestudiedtoassessprevalenceofdisabilityin2-to

9-y-oldchildren;only1child

perfam

ilywasselected;

thenumberoffam

iliesinthe2socialstratawere

approximatelyequivalent;the

meanageofthe

childrenwas5y,and

�50%wereboys;while17.2%

offamiliesintheloweststratahadachild

with

disability,8.4%

inthenextlowestgroup

hadachild

with

disability;disabilityvariedacrossagegroups,

anditwas26%in2-y-olds,9%in3-to6-y-oldsand

15%in7-to9-y-olds;�

57%ofthedisabled

640

12.7

——

——

——

childrenwereboys;onlyspeech-relateddisability

variedsignificantly

betweenthe3agegroups,with

thehighestprevalenceseen

inthe0-to2-ygroup

New

tonetal30

Kenya


tovalidateaquestionnaireto

detecthearingloss

SP:com

munity

ST:aquestionnairedesignedto

collectinformationon

child’s

behavioralresponseto

Nursery-gradechildrenbelongingto6districtswere

screened;the

schoolsw

ereselected

random

ly;the

questionsassessed

bilateralhearingimpairm

entat

40dB;therespondentswereschoolteachers,parents,

andcaregiversandcommunity

nursesatmaternal

andchild

healthclinics;the

type

ofrespondentwas

random

lyselected

ineach

districtand

theparents/

757

——

——

1.7

——


soundandcommunication

abilityandalso

causesof

hearingimpairm

ent;pure-

tone

audiom

etry

caregiversaccompanyingthechild

were

questionedwhileattendingaclinic;the

mean

ageofthechildrenwas5.7y;validationofthe

questionnairewasdone

usingpure-tone

audiom

etry;w

hilethesensitivityofthe

questionnairewas100%

,specificity

was75%

Nirm

alan

etal21

India

RD:cross-sectionalcom

munity-

basedassessmentof

blindnessand

itsfunctional

impactinchildren

SP:com

munity

ST:Cam

bridge

Crow

dedCards

andLV

Prasad

Visual

FunctionQuestionnaire

(LVP-VFQ)

Community

workersassessed

visualacuityusing

Cambridge

Crow

dedCardsand

also

conducted

externalphysicalexam

ination;thosewith

suspectedvisualproblemsw

erereferredtoa

pediatric

ophthalmologist;functionalabilitywas

assessed

usingapreviouslyvalidated

LVP-VFQ;

themeanageofthechildrenwas10.3y(range:

0–15

y);resultsshow

edthatvisualimpairm

ent

withinthecommunity

wasnotidentified

appropriatelybecauseamajority

ofchildren

with

sometype

ofvisualimpairm

entw

erenot

identified

assufferingfromitbeforethevisual

tests;thisunderlinedtheimportanceofscreening

forvisu

alimpairm

entamongchildreninthe

community

1250

——

—9.2

——

—

Olusanya3

1Nigeria


ofhearingimpairm

entin

schoolchildren

Schoolchildrenwerechosen

throughaprocesso

frandom

izationandevaluatedforhearing

impairm

entusin

gscreeningtools;agesranged

359

——

——

8.9

——

SP:com

munity

ST:tym

panometryandpure-

tone

audiogram

from4.5to10

y,andtherewere190girlsand169

boys;educationalperformancewasalsonoted;high-

frequencyhearinglosswascommon,with

otitis

mediaandunconjugated

hyperbilirubinem

iaas

common

causes

Olusanyaetal32

Nigeria


toestim

ateprevalence

ofhearingimpairm

entin

schoolchildren

SP:com

munity

ST:parentalinterview

s,otoscopy,pure-tone

audiom

etric

screening,and

tympanometric

exam

inations

Newschoolentrantsin1citywereinclu

dedinthestudy;

theagesofthechildrenvariedfrom4.5to10.9y;of

the76

schoolsinthecity,8wererandom

lyselected

forthe

study,andineach

schoolthefirstchild

was

selected

random

lyfollowed

byeverythird

child;

while14.5%failedtheaudiom

etrictest,and

32.9%

failedthetympanometrictest;ofthe

50childrenwith

hearingloss,18(36%

)had

conductivehearingloss,

12(24%

)had

sensorineuralhearingloss,and

20(40%

)had

mixedhearingloss;im

pacted

cerumen

andotitism

ediawerethecommonestcauses

359

——

——

13.9

——

Paland

Chaudhury4

3India

RD:cross-sectionalvalidation

ofascaletoassessparental

attitudestowardtheir

childrenwho

sufferedfrom

somedisability

SP:childrenwith

epilepsy

Ascreeningtoolwasvalidated

amongmothersof

childrenwith

epilepsy;theyhadnegativeattitudes,

feltincapableofhelpingtheirchildren,andresorted

toovercontrolorundercontroloftheirchildren’s

activities;the

scalewasvalidated

inthesamplebut

needed

tohavemoreexternalvalidation

46—

——

——

——


APPENDIX2

Qua

litativean

dQuantitativeInform

ationon

Epidem

iologicStud

ies

Article

Coun

try

Metho

dEpidem

iology

SSAD

,%ND,%

ID,%

VD,%

HD,%

SD,%

MD,%

ST:scaletomeasureparental

adjustmenttow

ardtheir

childrenwith

disability

Paletal47

India


toexam

inethesocietal

integrationofchildrenwith

epilepsyinaruralsetting

SP:neurology

clinic

ST:questionnairedeveloped

toassesssocialintegration

Asubgroup

fromagroupofchildrenon

antiepileptic

drugsw

asinclu

dedinthestudy;aquestionnairewas

developedbasedon

nonparticipatoryobservation,

bydisabilityworkers,ofchildren’sactivities,and

their

socialin

tegrationinthevillages;theparentsreported

thereasonsforthechild

notparticipatingina

particularactivity;88casesw

erecomparedagainst

controlswho

wererandom

lyselected

throughage-

stratified

samplingofhealthypopulationwithinthe

samecohort;therewere5groupswith

50controls

foreachgroup;thegroupswerepreschool(2–5y)

children,school-agedboysandgirls(6–12y),and

adolescentboysandgirls(13–18

y);the

parents

333

——

——

——

—

influencedschoolattendance,and

oftenthe

children’sactivitieswererestrictedtorunningerrands

andtendingofanimals;boysmissed

outonpeer

interactionsandplay,and

girlshadrestrictedsocial

activities;aquarterofparentshadnegativefeelings

abouttheirchildren,andsomefeared

fortheirsafety;

parents’negativeattitudesandsocietalperceptions

wereimportantfactorsthataffected

social

integrationofthechildren

Pauletal92

Jamaica

RD:cross-sectionalhouse-to-

housesurvey

ofdisability

inchildren

SP:com

munity

ST:TQ

Community

workersinitiallyscreened

2-to9-y-olds

usingtheTQ;thosewho

screened

positiveand8%

ofthosewho

screened

negativewerefurtherassessed

usingaprotocoldevelopedforthisresearch;of193

childrenwith

disabilities,mild

disabilitywaspre-

valentin6.9%

,moderatein1.9%

,and

severein0.6%

;while70%had1disability,almost30%

had

�2dis-

abilities;inthemotordisabilitygroup,70%weredue

tocerebralpalsy;amajority

ofthecausesofdisability

wereunknow

n;infectionswereacommon

causefor

hearingimpairm

ent

5468

9.4

0.2

8.1

1.1

0.9

1.4

0.4

Prescottetal33

SouthAfrica


toascertainthereliabilityofa

voicetesttoidentify

hearingimpairm

ent

SP:com

munity

andclinics

ST:voice

test

Thestudygroupconsisted

of177childrenfromclinics

and201fromclassroom

s;a3-level“voice

test”w

asdeveloped,refined,and

standardized,anditsvalidity

wasassessed

againsta

standardizedaudiom

etrictest;

thespecificityofthenewtestwas95.9%,and

the

sensitivitywas80%inclinicalstudies;in

the

classroom

-based

study,thespecificitywas97.8%and

sensitivitywas83.3%

378

——

——

——

—


Qi-hua

etal50

China

RD:m

atched

case-contro

lstudytoascertainthe


disabilityinapopulation

SP:com

munity

Children(�

14y)livinginan

urbanareawereinclu

ded

inthestudy;

�50%wereboys;thosewho

screened

positiveon

thescreeningtoolsw

ereclinically

assessed;m

entalretardationwasidentified

in56

children;theprevalenceincreasedwith

age,

7150

——

0.8

——

——

ST:DenverD

evelopment

ScreeningTool,Good-

enough’sDrawaPicture

Test,Gesell’sDevelop-

mentalTest,Wechsler

IntelligenceScalefor

Children-Revised

reaching

apeakof1.1%

inthe10-to14-y-oldgroup;

therewereno

genderdifferences;ofthe

identified

cases,mild

casesw

eremostcom

mon

(62.5%

)followed

bymoderate(28.6%

)and

severe(8.9%);the

prevalencewashigherinthepoor,thosewith

parentsw

ithlowereducation,thosewith

family

historyofalcoholism,thosewith

increasedageofthe

mother,andthosewith

aprevioushistoryofachild

with

mentalretardation;4age-gender/residential-

area–m

atched

controlswereselected

foreachcase,

andtheriskfactorswereassessed;perinatalfactors

likematernalviralin

fection,lowbirth

weight,birth

asphyxia,useofdrugs,pasthistoryofseizuresafter

birth,braininjury,m

alnutrition,anddeficient

preschooleducationweresomeofthecommon

factorsw

ith�4-tim

eshigherrelativerisks

Richmondetal85

Developing

countries

RD:reviewssom

eofthe

issuesassociatedwith

disabilityinchildren

SP:com

munity

ST:none

Thestudyalsohighlightssom

efactorsthataffectthe

prevalenceofchildrenwith

disabilitylikepopulation

grow

thleadingtoincreasedabsolutenumbers

ofdisabled

children,increaseinthenumberof

high-riskbirths,andurbanizationleadingtoincreased

exposuretoaccid

ents;som

eoftheindicatorsthat

helptoascertaindisabilitytrendsareinfantmortality

rate,lowbirth

weight,degree

ofmalnutrition,

prevalenceofinfectiousdisease,mentaldisorders,

otherchronicdiseases,and

accid

ents

——

——

——

——

Russelletal58

India

RD:RCT

toassessthebenefit

ofinteractivegroup

psychoeducationam

ong

familieswith

childrenwith


SP:childrenwith

disabilities

andtheirfam

ilies

ST:BinetKamatScaleof

Intelligence,Gessell

DevelopmentSchedule,

ParentalAttitudeScale

Towards

Managem

entof

IntellectualDisability

Consecutivebiologicalparentsofchildrenwith

intellectualdisability(based

onDSM-IV

criteria)w

ithno

othercom

orbiditywererandom

lyassignedto

eitherreceive10

wko

fintegratedgroup

psychoeducation(IGP)ordidacticlectures;while

bothgroupsreceived

know

ledgeon

issueslike

behavioralproblems,legalissues,m

arriage,

comorbidity,and

skills

developm

ent,the

experim

entalgroupsw

ereallowed

discussionwith

anexpertandproblem-solving

skilldevelopm

ent;the

childreninbothgroupsweretaughtskills

developm

ent,improvem

entofsocialskills,trainingin

self-care,and

prevocationaltraining;parents

58—

——

——

——


APPENDIX2

Qua

litativean

dQuantitativeInform

ationon

Epidem

iologicStud

ies

Article

Coun

try

Metho

dEpidem

iology

SSAD

,%ND,%

ID,%

VD,%

HD,%

SD,%

MD,%

reportedon

theirattitudesbycompletingthe

attitudesscaleattheendofthe1stand

10thwk;

therewere29

intheexperim

entalgroup

and28

controls;twothirdshad

mild

intellectualdisability,

andthreefourthsw

ereboys;asim

ilarproportion

was

fromaruralbackground;themeanageoftheparents

was31.6y,andthatofthechildrenwas6.4y;theIGP

wasfoundtobe

beneficialin

improvingattitudesof

theparentsovera

shortterm,especiallyam

ong

thosewith

childrenwith

mild


Sauvey

etal22

Nepal

RD:Cross-sectionalstudy

ofruralhouseholdstoassess

prevalence

ofdisabilityin

the

�20-yagegroup

SP:com

munity

ST:none

Householdsover24

ruraldevelopmentcom

mittees

wereasked2questionsaboutthe

presenceof

anyone

with

adisabilityinthehouseholdaged

�20

yandthetype

ofdisability;theinterviewwas

supervisedby

surveyors;halfofthepopulation

surveyed

werefemale;829childrenandadolescents

wereidentified;amongthosewith

disability,the

male/femaleratio

was3:2;theprevalenceacrossthe

differentcommunitiesvariedbetween0.4%

and

6.2%

;the

commonestdisabilitywasmotor(89%

)followed

byspeech

(22%

),vision(13%

),hearing(8%),

andlearning

(6%)

28376

1.0

——

——

——

Sebikari9

3Uganda


toassessthetypeso

fneurologicdisordersand

theiretiology

SP:neurology

clinic

ST:none

Childrenattendingaparticularneurology

clinicwere

included

inthestudy;agesranged

from0to11

yearsand

themale/femaleratio

was1.3:1;someof

thecommonestetiologicfactorsw

erecongenital

problems,infections,prematurity,birthtraum

a,etc;thecommonestdiagnosiswasconvulsio

nsfollowed

bymentalretardation

370

—40.5

37.8

4.3

—13.2

37.0

Serpell23

Developing

countries


tofind

outclinicalcriteriato

describesevereintellectual

disabilityinsomecountries

asused

bytheclinicians

workin

ginthosecountries

toreachacomprehensive

description

SP:com

munity

ST:TQ,ChildDisability

Questionnaire

Ahouse-to-housesurveywasdone

inBangladesh,

Brazil,India,Jamaica,M

alaysia,Nepal,Pakistan,and

SriLankatoassesssevereintellectualdisabilityaspart

oftheInternationalPilotStudy

ofSevereChildhood

Disability;theTQ

andChild

DisabilityQuestionnaire

wereused

asscreeningtools,butitw

asfoundthat

discrepanciesexistedbetweenthescreeningtools

andcriteria

used

byclinicianstodiagnosesevere

intellectualdisabilityinthesecond

phase;

informationwassoughtfromcliniciansinvolved

intheprojectabouttheirconceptsregarding

definition

ofsevereintellectualdisabilitywith

theaimof

developing

acommon

understandingofthe

problem;behavioraldom

ainwasimportant,and

consensusw

asfoundon

5domains,although

variationsbasedon

characteristicsofthe

clinicians

wereobserved;training,culturalissues,and

——

——

——

——


competenceinEnglish

played

amajorrolein

determ

iningthecriteria

bywhich

diagnosis

was

madeby

theclinicians

Shah

68Developing

countries

RD:reviewsstudieson

disabilitiesand

itspreventionmethods,

especiallyfromthe

perspectiveofintellectual

disability

SP:com

munity

ST:none

Internationalstudieshaveshow

nthattheprevalenceof

severementalretardationindeveloping

countries

likeIndia,Pakistan,Bangladesh,Nepal,and

SriLanka

varybetween0.5%

and1.5%

;acrossthe

worldthe

common

causesarebirth

asphyxiaandtraum

a,intrauterinegrow

thretardation,infection,

malnutrition,iodine

deficiency,irondeficiency,

neonataljaundice,and

geneticandmetabolic

disorders

——

——

——

——

Shaw

kyetal40

Saudi

Arabia


toassessthematernalrisk

factorsthatcontributeto

childhood

disability

SP:childrenwith

andwithout

disabilities

ST:none

Childrenfromspecialschoolswith

mental,hearing,and

visualdisabilitywereinclu

dedinthestudyalongwith

nondisabled

normalschoolchildren;whilechildren

with

disabilitywereselected

fromspecificschools,

normalchildrenwereselected

throughaprocessof

stratified

random

samplingof42

boys’and

girls’

schools;themeanageofthechildrenwas13.7y

(range:6–20

y)with

�55%inthe10-to14-y-

4670

——

——

——

—

oldgroup;therewere3405

childrenwith

nodisability,421with

auditorydisability,178with

visualdisability,and666with

intellectualdisability;

overall,�

43%wereboys;illiteracyandunem

ploy-

mentinthefamiliesofdisabled

childrenwerehigher;

consanguinity

wascommon;m

others

�16

yor

�30

ywereatincreasedrisk;multiparity

added

totherisk

Singhietal42

India


toascertaincausesand

associateddisabilitiesin

childrenwith

cerebralpalsy

SP:childrenwith

cerebralpalsy

ST:none

Thechildrenwereselected

fromarehabilitation

centre;the

meanagewas36.4mo,and67.5%

weremale;commonestantenatalcauseswere

antenatalhem

orrhage,fever,preeclam

tictoxemia,

anddrug

use;commonestneonatalcausesw

ere

birth

asphyxia,low

birth

weight,convulsio

n,and

neonataljaundice;spastictype

ofcerebralpalsy

accountedfor70%

ofcases;

�72%hadmental

retardation,41%hadvisualimpairm

ent,32%had

convulsio

ns,51%

hadmalnutrition,and14%had

hearingproblems

1000

——

——

——

—

Sonnanderand

Claesson

69

China

RD:reviewofliteratureon

classification,prevention,

epidem

iology,and

rehab-

ilitationofchildrenwith

intellectualdisabilityin

Chinabetween1990

and

1995

SP:com

munity

ST:Differentstandardized

scalesused

instudiessince

Overall,studiesp

ointtoafigureof

�2%

ofintellectualdisabilityam

ongchildren;themale/

femaleratio

was108:100;ruralareashave

higher

rates,especiallyinhilly

regionsw

ithiodine

deficiency;othercausesw

ereperinatalcauseslike

injuriesd

uringlabor,genetic

factors,infections,etc

——

——

——

——


APPENDIX2

Qua

litativean

dQuantitativeInform

ationon

Epidem

iologicStud

ies

Article

Coun

try

Metho

dEpidem

iology

SSAD

,%ND,%

ID,%

VD,%

HD,%

SD,%

MD,%

theirusewasinitiated

in1980,although

notallhave

been

validated

inthe

Chinesepopulation

Steinetal24

Developing

countries

RD:2-stage

multicountry

cross-sectionalsurveyof


SP:com

munity

ST:TQ

A2-stagesurvey

wasused

toassesstherateso

fdisabilityin10

differentcountries;age

ofthe

childrenranged

from3to9y;initialdoor-to-door

survey

usingtheTQ

wasfollowed

byclinical

assessmentofpositive

cases;ratesforsevere

8557

——

0.5–4.0

——

——

mentalretardationvariedfrom5in1000

inthe

Philip

pinesto40.3in1000

inIndia;otherrates

wereBangladesh16.2in1000,SriLanka5.2in1000,

Malaysia

11.2in1000,Pakistan

15.1in1000,Brazil6.7

in1000

andZambia5.3in1000.The

prevalence

ofmild

mentalretardationwere:138in1000

(Bangladesh),61in1000

(Brazil),18

in1000

(India);9

in1000

(Malaysia),21

in1000

(Pakistan),4in1000

(Philippines),7in1000

(SriLanka),and

30in1000

(Zam

bia);the

commonestcauseforthe

variation

wasdifferenceinassessments;in

Malaysia,the

commonestreasonforintellectualdisabilitywas

perinatalfactors;inPakistan,itwasgeneticand

prenatalcauses;bothmild

andseveremental

retardationweremorecommon

inboys;severe

mentalretardationwascommon

amongthepoor;

consanguinity

wasamajorcause;movem

ent

disorders,sensorydeficits,and

seizuresw

eremost

common;m

ildmentalretardationwasoftennot

recognizedby

mothers

Tamratetal91

Ethiopia


assessment

SP:com

munity

ST:TQ

Housesw

ereselected

basedon

random

stratification

done

onthebasis

ofruralorurban

setting;while

thesurvey

assessed

disabilityacrossallage

groups,

childrenaged

5–14

yaccountedfor�

39%of

thoseassessed;the

commonestcauseso

fblindnessw

erevitaminAdeficiency,traum

a,and

measles

1628

3.1

——

——

——

Tao6

1China

RD:reviewofepidem

iologic

studieso

nchildrenwith

intellectualimpairm

ent

SP:com

munity

ST:differentstandardized

screeningtoolsu

sedin

China

Epidem

iologicstudiesand

understandingofmental

retardationwerenotpresentinChinabefore1950;

since

the1970sclustersamplinghasb

eenthe

mostcom

mon

methodofassessmentand

often

trained

interviewersfollowed

bymentalhealth

professio

nalshelpinidentifying

cases;the

prevalence

ofmentalretardationvariesb

etween

0.1%

and0.8%

acrosscommunity-based

studies

with

generally

higherratesinruralareas;prenatal

andpostnatalcausesw

erethemorecommon

——

——

——

——


etiologicfactorsand

included

congenital

disorders,birth

traum

a,prem

aturity,convulsions,

infections,etc

Tekle-Haimanotetal25

Ethiopia

RD:cross-sectionalsurveyto

assesscommon

neurologic

disordersleading

todisability

SP:com

munity

ST:questionnaireso

nsocioeconomicstatus,

generalm

edicaland

psychiatric

disorders,and

neurologicdisorders

Thestudyinvolved

adoor-to-doorsurveyof

�60

000

ruraland

urbanpopulation(�

35000childrenaged

0–19

y)inBujatira;layinterviewersfromthevillages

weretrained;amedicalofficerw

asalsotrained

inneurology;experts

fromtheMapping

Institute

provided

simpletechniquesofmapping

thearea;

priortolaunchingtheproject,thequestionnairewas

piloted;informationon

differentneurologicdisorders

ordisabilitywasobtained

fromthehead

ofthe

householdorspouse;initialscreeningledto

identificationofpersonsw

ithphysicalorm

ental

disabilities;trained

medicalofficersreinterviewed

somecasesforvalidation;thosewith

probable

neurologicproblemsw

erescreened

furtherusinga

detailedneurologicquestionnaireandclinical

exam

inationandprovided

treatment,ifrequired;

intellectualdisabilitywasidentified

in81

children;

severementalretardationvariedacrossagegroups:

0.2%

(0–4

y),0.2%(5–9

y),and

0.3%

(10–14

y);overall

therewere106childrenwith

poliomyelitis,giving

aprevalenceof0.3%

;consanguinitywasassociated

with

higherratesofallp

roblem

s

35139

——

0.2

——

—0.3

Thorburnetal48

Jamaica


totestthevalidity

oftheTQ

anddetectchildhood

disabilities

SP:com

munity

ST:TQ,M

edicalAssessment

Form

,Psychological

AssessmentProcedure

Initialdoor-to-doorsurveyusingtheTQ

wasfollowed

byclinicalexaminationofthepositivecasesand

aselectionofnormalcases;community

workers

gathered

data;childrenwere2-to9-y-olds;while

specificityacrossalldisabilitiesw

as�85%,sensitivity

was100%

exceptforseverecognitivedisabilities,for

which

itwas52%becauseoffalse-negative

moderatecases

5478

—0.2

1.7

0.1

0.4

0.6

0.1

Tombokan-Runtukahu

andNitko7

8

Indonesia


toassesstheadaptationand

validity

oftheIndonesian

AdaptationoftheVineland

AdaptiveBehaviorScale

Thescalewassubjectedtoqualitativeand

quantitativeanalysisduringtranslation,cross-

culturaladaptation,fine-tuning,and

data

collections

——

——

——

——

SP:childrenwith

andwithout


ST:IndonesianAd

aptationof

theVineland

Adaptive

BehaviorScale

SSindicatessam

plesize;AD

,alldisabilities;ND,neurologicdisability;ID,in

tellectualdisability;VD

,vision

disability;HD,hearingdisability;SD

,speechdisability;MD,m

otordisability;RD

,researchdesig

n;SP,study

population;ST,screening

tool(s);—,datanotavailable;

DSM

-IV,Diagnostic

andStatisticalManualofM

entalDisorders,FourthEdition.


DOI: 10.1542/peds.2007-0043B2007;120;S1Pediatrics

Pallab K. Maulik and Gary L. DarmstadtScreening, Prevention, Services, Legislation, and Epidemiology

Childhood Disability in Low- and Middle-Income Countries: Overview of

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DOI: 10.1542/peds.2007-0043B2007;120;S1Pediatrics

Pallab K. Maulik and Gary L. DarmstadtScreening, Prevention, Services, Legislation, and Epidemiology

Childhood Disability in Low- and Middle-Income Countries: Overview of

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