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Abstract
The purpose of this article is to examine the current literature addressing interventions to support the developmental process of children of early age with disabilities in Indonesia, who are threatened with significant environmental risk. To achieve that, a scoping review was conducted. The following databases were searched: PsycINFO, PubMed, Embase, CINAHL, ERIC, Social Services Abstracts, and Scopus, as well as the reference lists of all included studies. We searched 46 open access Indonesian journals and conducted hand-searches at the four main Indonesian universities. Searches were conducted of Google Scholar and the websites of Indonesian government and nongovernmental agencies to identify gray literature. These agencies were also personally contacted to identify relevant reports. Eight studies met our inclusion criteria. The existing research investigates on various interventions including two studies utilizing strategies indigenous to Indonesian. Environmental risk factors were not addressed directly by all the interventions. The eight studies targeted all areas of early childhood development. Several limitations were found in these studies’ methodology, and they also used similar research designs. This review highlights the need of more rigorous and culturally relevant research to fulfill the developmental needs of young children with disabilities in Indonesia. Keywords disability, Indonesia, intervention, scoping review, young children that their development and well-being is not impacted fur- Introduction ther. This early childhood development phase, which com- There are approximately 4.2 million children experiencing prises of cognitive, sensory motor, communication and disabilities in Indonesia, with an estimated prevalence in the social-emotional factors, is crucial as it impacts upon the general population of 21.3% (2006 figures; South-East Asia entire course of an individual’s life (WHO, 2012). Regional Office–World Health Organization [SEARO- Various early-intervention programs for a range of dis- WHO], 2013). While this prevalence is extremely high, those abilities have been developed and reviewed. For example, a living outside the main centers are at added risk due to the recent meta-analysis (Reichow, 2012) provides strong evi- “the physical, social and attitudinal environment in which dence for Early Intensive Behavioral Intervention programs people live and conduct their lives” (World Health for improving outcomes for children with autism spectrum Organization [WHO], 2007, p. xvi). Such environmental disorder (ASD). Similarly, a systematic review of the Head risks include poverty, stigma and discrimination, poor inter- Start program for school readiness in children affected by action with parents and caregivers, violence, abuse and poverty in the United States has been found to be effective in neglect, and limited access to programs and services (Maloni preventing developmental delays (Anderson et al., 2003). et al., 2010; WHO, 2012). Environmentally at-risk young children are defined as The University of Adelaide, South Australia, Australia those who experience one or more of these risks, to the extent Institute of Resource Governance and Social Change, Kupang, Indonesia that their development is negatively impacted as a conse- Corresponding Author: quence (Guralnick, 2013). Given the additional burden expe- Indra Yohanes Kiling, The University of Adelaide, Hughes Building, North rienced by these children, early-intervention programs Terrace, Adelaide, South Australia 5005, Australia. Email: iykiling@gmail.com focusing on reducing environmental risk are needed to ensure Creative Commons CC BY: This article is distributed under the terms of the Creative Commons Attribution 4.0 License (http://www.creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). 2 SAGE Open While these two examples demonstrate that early-inter- an emerging area, and do not necessarily aim to provide exten- vention programs have had some success in improving out- sive evaluation of quality. As such, scoping reviews are consid- comes for young children with disabilities, most of the ered appropriate in considering emerging cross-cultural existing programs are devised for children in Western or research where traditional quality evaluations may be inappro- developed countries. Very few programs have been specifi- priate or exclude studies that are potentially important contri- cally designed in the context of rural communities; in addi- butions to the literature. tion, they tend not to consider environmental risk factors This study followed five stages identified as important to (Maulik & Darmstadt, 2007) thus further limiting generaliz- scoping reviews based on published guidelines (Arksey & ability to low- and middle-income countries such as Indonesia Malley, 2005): (a) identifying the research question, (b) iden- (Mishra & Gupta, 2006). Moreover, programs devised in tifying relevant literature, (c) selecting the literature, (d) partnership with local communities will provide better out- charting the data, and (e) collating, summarizing, and report- comes for children given that they will arguably be more cul- ing the results. Furthermore, as Levac, Colquhoun, and turally appropriate and draw upon locally available resources O’Brien (2010) suggest, we outline the research and practice and knowledge (WHO, 2011). implications stemming from the results of this study. Despite the need for such interventions, government agencies and nongovernmental organizations (NGO) based Study Inclusion and Exclusion Criteria in Indonesia continue to focus their attention and resource programs for physical health priorities such as malaria, avian For studies to be included, they had to meet all of the follow- influenza, nutrition, and child mortality (UNICEF Indonesia, ing inclusion criteria: (a) be an empirical evaluation of an 2010). Against this backdrop, this article addresses the fol- intervention with the objective of supporting the developmen- lowing research question: tal process of young children with disabilities (therefore we excluded opinion pieces and review literatures), (b) address Research Question 1: What is known from the existing intervention targeted at young children in the early childhood literature about the interventions specifically designed to period (prenatal to 8 years of age), (c) address an intervention support development of young children with disabilities targeted at any type of disability as defined by the International affected by environmental risk factors in Indonesia? Classification of Functioning, Disability and Health (WHO, 2011), and (d) address an intervention conducted in Indonesia. Thus, we aim to add to similar studies from low- and middle- To increase the scope of the research, we included studies income countries (Njelesani, Couto, & Cameron, 2011), by regardless of publication year, and in the gray literature, such identifying what further research is required for addressing as those in the main government and nongovernment reports unmet developmental needs for children with disabilities in as well as theses from the four main Indonesian universities. these contexts. The results from this review should help gov- ernment agencies and NGOs in Indonesia and other low- and Types of Participants middle-income countries to decide what evidence-based interventions are available to be adapted into national- and Participant inclusion criteria included a focus on young chil- provincial-level policy. dren, defined as those below 8 years of age (WHO, 2012). The United Nations Convention on the Rights of Persons With Disabilities (CRPD) declares that people with disabili- Method ties include those with long-term impairments which in interaction with existing barriers may hamper their participa- Scoping Review tion in the community (United Nations, 2006), and thus, a Scoping reviews provide an important method through which broad definition of disabilities was applied in this study. to overview and map the relevant literature in a specific field of study (Arksey & Malley, 2005). Similar to systematic reviews Outcomes and Nature of the Intervention and meta-analyses, they are considered comprehensive and rig- orous enough to stand-alone as a form of project (Arksey & All types of interventions were considered, including those Malley, 2005). There are two main differences between sys- that focused on one particular outcome or multiple outcomes. tematic reviews and scoping reviews. The first is that a system- Thus, interventions could address any or all of the following atic review usually has a well-defined research question with areas of the early childhood development phase: cognitive, specific study designs that are noted in advance. Scoping sensory motor, communication, and social-emotional. reviews are more relevant where previous research in an area is sparse and, as such, have a broader focus that includes different Search Methods study designs. The second difference is that while systematic reviews include an assessment of the quality of the extant stud- The first author conducted the searches in consultation with ies, scoping reviews aim to provide an overview of research in the co-authors and an experienced research librarian (Learning Kiling et al. 3 and Research Services, University of Adelaide). The follow- ing academic databases were searched: PsycINFO, PubMed, Embase, CINAHL, ERIC, Social Services Abstracts, and Scopus using a logic grid (available by contacting the first author), as well as the reference lists of all included studies. Open access Indonesian journals not necessarily indexed in the aforementioned databases were also searched (N = 46 journals). Hand-searches were conducted in the libraries of the four main Indonesian universities (University of Indonesia, Padjajaran University, Indonesia University of Education, and Gadjah Mada University). To locate gray lit- erature, searches were conducted of Google Scholar and the websites of Indonesian government (using “go.id”) and non- governmental agencies (The Ministry of Education and Culture, The Ministry of Social Affairs, UNICEF, Plan Indonesia, World Vision, ChildFund, Handicap International). These agencies were also personally contacted by the first author to identify relevant reports. Study Selection First, all authors discussed decisions about study inclusion and exclusion. The subsequent steps were conducted by the first author in consultation with the other authors. The titles returned by the initial search were categorized as relevant, not relevant, or possibly relevant. The abstracts of the rele- Figure 1. Flowchart of study selection. vant and possibly relevant titles were reviewed. The full-text of articles considered relevant or possibly relevant were read Results to make final decisions concerning inclusion. There was no blinding of authorship. A total of 1,832 records were identified with 1,548 excluded based on duplication and irrelevant titles (as determined by the inclusion criteria outlined previously). A total of 284 Charting the Data abstracts of studies were screened and 59 studies were The first author used a data-charting form (Levac et al., 2010) included to be reviewed in full. Google scholar identified designed for scoping reviews of mixed-method studies to 418 articles as potentially relevant, with two studies included extract the data. A descriptive review method was used for each for full review. The search of the Indonesian government included study as follows: the author/s, year of publication, websites identified three studies for full review. The search country in which the research took place, aim of the study and of the 46 Indonesian open access journals identified five research question/s, study design, the age of study participants, studies to be reviewed in full. The review of 29 NGO web- type of intervention, outcomes, results, main findings, and lim- sites revealed one study to be included. The search of the itations. Two additional aspects were assessed: the type of four Indonesian university libraries found nine studies to be resources used (universally available/only locally available) included. To summarize then, a total of 20 titles were and the area of early childhood development targeted by the included from gray literature to be reviewed in full-text. intervention (cognitive, sensory motor, communication, social- After reviewing the full-text of all relevant articles, eight emotional). After extracting the data, the first author consulted studies were eligible and included in the scoping review (see with the others to determine whether the obtained information Figure 1). was consistent with the research question. Excluded Studies Collating, Summarizing, and Reporting the Seventy-one articles were excluded following the review of Results the full-text. Studies were excluded if they did not provide Data collation and summarization was done using both a the age of the participants, were purely descriptive in nature, table and text (“Results” section), followed by a discussion and considered at-risk children rather than those with a cur- of research, practice, and policy implications (Levac et al., rent disability. Studies that did not provide the age of the 2010), in the “Discussion” section. participants tended to describe children in relation to current 4 SAGE Open school status, which in low- and middle-income countries body so as to improve “self-awareness.” A therapeutic may not be correlated with age due to the tendency for chil- approach was utilized by three studies: specifically, Cendana dren with disabilities to begin kindergarten or preschool past aromatherapy (Rahim, 2014), behavior therapy (Dewiyanti, the early childhood period (WHO, 2011). 2007), and music therapy (Chandra, 2007). The other three studies used various interventions, including traditional dance, a board game, and question and answer activity. Descriptive Summary of the Studies Thus, six of the eight studies examined interventions Manuscripts were published between 2006 and 2014. Three incorporating universally available resources such as the of the articles were published in open access, peer-reviewed maze-matching board game (Sekarwati & Riyanto, 2013), academic journals and were based on bachelor degree theses behavior therapy (Dewiyanti, 2007), and picture cards from the State University of Surabaya (Kurniawati & (Citrasari, 2006). Two studies employed local approaches Madechan, 2013; Putri & Widajati, 2013; Sekarwati & including the Lenggang Alit dance (Kurniawati & Madechan, Riyanto, 2013; see Table 1). 2013) and Cendana wood unique to Indonesia and nearby areas (Rahim, 2014). The interventions addressed all areas of early childhood development: cognitive (Citrasari, 2006; Chronological Distribution of Studies Wardhani, 2007); sensory motor (Chandra, 2007; Dewiyanti, Despite not limiting our search to specific dates, all of the 2007; Kurniawati & Madechan, 2013; Sekarwati & Riyanto, included studies were relatively recent, with the oldest study 2013), communication (Putri & Widajati, 2013), and social- being published in 2006 (Citrasari, 2006). Half of the emotional (Rahim, 2014). included studies were published more recently between 2013 and 2014. Research Designs and Outcomes All of the studies used the single-case experimental design Geographic Distribution of Studies with outcomes presented as the frequency of the targeted Six of the eight studies examined interventions conducted in behavior at each data collection period. This outcome mea- Java. This may be as a consequence of the fact that the hand- sure was obtained through observation by the researcher who search of university libraries was confined to the four main also provided the intervention. institutions on Java, and the open access journal that pub- lished three of the included studies is published by a state Results of the Included Studies university in Java (Kurniawati & Madechan, 2013; Putri & Widajati, 2013; Sekarwati & Riyanto, 2013). The other two All studies reported improvement on outcomes. Data were studies (Chandra, 2007; Dewiyanti, 2007) did not cite the typically presented in graphical format that was often diffi- exact location, but were completed for fulfillment of a degree cult to assess (Citrasari, 2006; Wardhani, 2007). Results in Gadjah Mada University, the national university in Java. were frequently presented in relation to percentage of non- overlapping data (PND) which is the extent to which data in the baseline (A) versus intervention (B) phases do not over- Intervention Recipient lap, suggesting an improvement in outcomes where there is Participants included boys and girls aged between 3 and 7 little or no overlap (Parker & Vannest, 2009). Three studies years of age. Diagnoses included ASD (Chandra, 2007; reported 0% PND (Putri & Widajati, 2013; Rahim, 2014; Dewiyanti, 2007; Kurniawati & Madechan, 2013; Putri & Sekarwati & Riyanto, 2013). One study (Kurniawati & Widajati, 2013), intellectual disability (Rahim, 2014; Madechan, 2013) reported 12.5% PND, while four studies Sekarwati & Riyanto, 2013), hearing impairment (Citrasari, did not specify PND, but still claimed that the interventions 2006), and visual impairment (Wardhani, 2007). Thus, the were effective as per increases or decreases in the frequency extant research has considered both physical and mental of the targeted behavior (Chandra, 2007; Citrasari, 2006; health disabilities, with a particular focus on ASD. Dewiyanti, 2007; Wardhani, 2007). Range of Interventions Analysis of the Studies as a Whole The studies examined a variety of programs with implemen- Overall then, the body of literature is small with interpreta- tation length from 6 days (Citrasari, 2006) to a period of 3 tion severely hampered by limitations in research design, weeks (Sekarwati & Riyanto, 2013), with between six ses- data analysis and reporting, and the potential for researcher sions (Citrasari, 2006) and 21 sessions (Sekarwati & Riyanto, bias. A central limitation of the research relates to the ways 2013) conducted. The two studies addressing physical in which disability was defined. Most of the studies exam- impairment (Citrasari, 2006; Wardhani, 2007)) included ined very specific forms of disability, such as ASD, and thus skills-based training for the children to identify parts of their did not consider the broader environmental context. Some 5 Table 1. Descriptive Summary of the Relevant Studies. Author and source Participant Study design Intervention Outcome Results Kurniawati and Madechan 7-year-old child with Single-case Lenggang Alit dance; 15 Gross motor constraints Gross motor constraint behavior (2013); Jurnal Pendidikan ASD (unspecified experiment, daily sessions, 30 min (e.g., jumping and was reduced; positive-level Khusus gender) A-B design duration in classroom running aimlessly) change from Phase A (baseline) to Phase B (intervention) and PND of 12.5% Putri and Widajati (2013); 7-year-old child with Single-case Video mediated question Speech activities Speech activity was increased; Jurnal Pendidikan Khusus ASD (unspecified experiment, and answers; 16 daily (e.g., saying words) positive-level change between gender) A-B design sessions, 35 min in Phase A and B, PND of 0% classroom Sekarwati and Riyanto (2013); 5-year-old boy with Single-case Maze-matching board Fine motor skills Fine motor activity was improved; Jurnal Pendidikan Khusus intellectual disability experiment, game; 21 daily sessions, (e.g., using pencils) positive-level change between A-B design 20 min in kindergarten phases, PND of 0% classroom Citrasari, N; Thesis for 3-year-old girl with Single-case Training with picture Pointing self-body parts Increase in child’s ability to identify Magister of Profession hearing impairment experiment, cards; six daily correctly her body parts; positive-level Psychology in Child-Clinical A-B design sessions, 30 min in change between phases, visual Psychology University of child’s house analysis (qualitative approach) Indonesia, 2006 showed positive change Chandra, A; Thesis for 4-year-old boy with Single-case Waltz music therapy Repetitive behaviors Repetitive behavior was reduced; Magister of Profession ASD experiment, with electronic (e.g., hand waving) positive-level change between Psychology in Clinical A-B-A-B design keyboard; 12 daily phases Psychology Gadjah Mada sessions; 90 min in University, 2007 child’s house Dewiyanti, A; Thesis for 6-year-old child with Single-case Behavior therapy; 10 Independent behaviors Increase in independent behavior; Magister of Profession ASD (unspecified experiment, daily sessions; 30 min (e.g., wearing shirts) visual analysis (qualitative Psychology in Clinical gender) A-B design in child’s house approach) showed positive-level Psychology Gadjah Mada change between phases University, 2007 Wardhani, D. A.; Thesis 4-year-old boy with Single-case Training with tactile Pointing self-body parts Increase in participant’s ability for Magister of Profession visual impairment experiment, strategy; 11 daily correctly to identify body parts except Psychology in Child-Clinical A-B design sessions, 30 min in hair and eyes; visual analysis Psychology University of child’s house (qualitative approach) showed Indonesia, 2007 positive-level change Rahim, R. S.; Thesis for 7-year-old girl with Single-case Cendana aromatherapy Aggressive behaviors Aromatherapy successful in Bachelor of Education in intellectual disability experiment, with vaporizer (e.g., hitting other reducing aggressive behavior Special Education, Indonesia A-B-A design technique; 15 daily person) but without long-term effect; University of Education, sessions, 30 min positive-level change between 2014 in kindergarten phases, PND of 0% classroom Note. ASD = autism spectrum disorder; PND = percentage of nonoverlapping data. 6 SAGE Open studies referred to “children with special needs” instead of Nature of Intervention “children with disability.” The use of the term “children A wide range of interventions were employed including two with special needs” highlights the emphasis on education in that utilized local resources—specifically Lenggang Alit relation to children with disabilities, as this term is typically dance and Cendana aromatherapy. Lenggang dance is native used in Indonesia only in an educational context (Citrasari, to the Malayu or Melayu tribe and has many variations 2006; Kurniawati & Madechan, 2013; Rahim, 2014; (Jakarta Tourism & Culture Office, 2015), while Cendana is Sekarwati & Riyanto, 2013). This emphasis could be due to a wood that can be easily found in East Nusa Tenggara prov- the fact that Indonesian law has particular provisions related ince, Indonesia. Cendana oil has been used for many pur- to the right to education for children with special needs, poses, including aromatherapy (“Mengembalikan harum including “special” education if appropriate (Primus, 2014). cendana,” 2010). Another shortcoming is that none of the included studies This may reflect the movement within Indonesian univer- made statements regarding approval from properly consti- sities to utilize local knowledge and resources in the design tuted human research ethics committees. of locally specific interventions (Sugiarto, 2015). This is occurring in alignment with the position that local knowl- Discussion edge will be more suitable to explain and solve local chal- lenges rather than generalized research from the so-called This scoping review explored the existing literature about “WEIRDos” (Western, Educated, Industrialized, Rich, and interventions designed to support the development of Democratic) countries (Jones, 2010). This particular move- young children with disabilities in Indonesia. Despite the ment is also taking place in other countries in Asia, namely, scale of childhood disability, this is the first published South Korea, Philippine, China, and Taiwan (Kim, Yang, & review that we are aware to form a coherent picture of cur- Hwang, 2006), and indicates that we can expect more of rent knowledge. Only eight articles met the inclusion crite- locally specific intervention research in the future. ria and none of these were published in international journals. More research might have been found however, had we extended our search of university libraries given Objective of Intervention that this was one of the main sources of the identified The studies were broad in terms of the developmental aspects research. This finding might also apply to other low- and addressed and included cognitive, sensory motor, communi- middle-income countries where publishing is mainly done cation, and social-emotional focus. This is exceptional con- in domestic platforms. sidering the dearth of research, workforce, and services in Indonesia. It might be partly explained by the disciplinary Intervention Date and Site background of the researchers, which included both psychol- ogy and special education. However, the lack of involvement The chronological distribution of the studies indicate that it of social science researchers and practitioners is curious, has only been in the last 12 years that researchers have paid considering that the Ministry of Social Affairs is the leading attention to researching interventions for young children agency tasked with to tackling disability issues in Indonesia. with disabilities. This situation is similar to that of other Noticeably, none of the interventions took account of countries in the South-East Asia region (e.g., Cambodia, environmental risk and focused directly on the specified dis- Vietnam), which typically pays more attention to adults ability suggesting a narrow individualistic approach. This with disabilities (SEARO-WHO, 2012). At the same time, narrow approach is in contrast to that indicated in other the fact that half of the included studies were published reviews from countries such as Tanzania which document recently could be viewed as a signal of a positive momen- that environmental conditions are readily incorporated into tum to address the challenge of caring for young children research from that country (Njelesani et al., 2011). with disabilities. The geographical focus of the research deserves note and highlights the disparity of research being conducted between Methodology and Duration of Intervention the main island of Java and other jurisdictions in Indonesia. This finding has also been noted in reviews of research about The included research was generally of poor quality. The disability from other low- and middle-income countries such single-subject design used in the included studies is popular as Vietnam (Ha, Whittaker, Whittaker, & Rodger, 2014) and for examining the efficacy of interventions for children with Namibia (Coomer, 2013). Certainly, the geographic spread disabilities, as it is simple and less complex than other of Indonesia across a vast archipelago makes the dispersion approaches (Cook & Bennett, 2014). The choice of design of resources more difficult, and our results highlight the need might have been additionally influenced by the difficulties for programs and research that take account geographical with recruiting participants due to stigma, an environmental location, as environmental risk and poorer access to services risk factor that is at play in much of Indonesia (WHO, 2011) are more acute outside of the main centers. and other low- and middle-income countries (WHO, 2012). Kiling et al. 7 Nevertheless, more research using robust designs with pre- highlights the need for more contextually relevant research. powered sample sizes is necessary to improve outcomes for This review highlights the need for more research to ensure children living with disabilities in these settings. access to evidence-based, context-specific, and culturally The review also indicates that improvements in research appropriate services to address childhood disability in procedure and especially ethics oversight is needed to avoid Indonesia and other low- and middle-income countries. harm. Furthermore, the included interventions appeared to be very time and resource intensive, occurring averagely 2 Declaration of Conflicting Interests weeks and conducted by a trained professional (albeit a stu- The author(s) declared no potential conflicts of interest with respect dent). Such an approach is unlikely to be able to be dissemi- to the research, authorship, and/or publication of this article. nated at the scale required to improve outcomes at the population level given the dearth of workforce and services. Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Implications for Disability Rehabilitation first author is sponsored by the Indonesia Endowment Fund for The results from this review indicate an emphasis on home- Education (LPDP) for this study and the whole PhD program in The and class-based interventions with a lack of research about University of Adelaide. community-based interventions. This is concerning given WHO reports indicating that such an approach is ubiquitous References in the South-East Asia region (SEARO-WHO, 2012). There Anderson, L. M., Shinn, C., Fullilove, M. T., Scrimshaw, S. 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World report on disability. Clemence Due is a senior lecturer at School of Psychology, The Malta: WHO Press. Retrieved from http://www.who.int/dis- University of Adelaide. Her research areas are including adults and abilities/world_report/2011/report.pdf children with refugee or migrant backgrounds and children with World Health Organization. (2012). Early childhood development and developmental disorders. disability: A discussion paper. Malta: WHO Press. Retrieved from Dominggus Elcid Li is the director of Institute of Resource http://apps.who.int/iris/bitstream/10665/75355/1/9789241504065_ Governance and Social Change at Kupang, Indonesia. His current eng.pdf research interests are concerning human trafficking threatening the rural areas of Indonesia. Author Biographies Deborah Turnbull was awarded the chair in psychology at The Indra Yohanes Kiling is a current candidate in the PhD degree at University in Adelaide in 2005 and has been researching in the area School of Psychology, The University of Adelaide. His research of health and clinical psychology for over 20 years. Her major con- aims to develop a model to support young children with disabilities tributions have been in relation to breast and colorectal cancer in West Timor, Indonesia. In his home country of Indonesia, he screening and maternity care. Her work has influenced the develop- holds position as a junior lecturer at School of Psychology, ment of services in Australia and the UK. Universitas Nusa Cendana.
Journal
SAGE Open – SAGE
Published: Jan 23, 2018
Keywords: disability; Indonesia; intervention; scoping review; young children