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Lessons Learned While Developing, Adapting and Implementing a Pilot Parent-Mediated Behavioural Intervention for Children with Autism Spectrum Disorder in Rural Bangladesh

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Title: Lessons Learned While Developing, Adapting and Implementing a Pilot Parent-Mediated Behavioural Intervention for Children with Autism Spectrum Disorder in Rural Bangladesh
Language: English
Authors: Blake, Jasmine M., Rubenstein, Eric, Tsai, Peng-Chou, Rahman, Hafizur, Rieth, Sarah R., Ali, Hasmot, Lee, Li-Ching
Source: Autism: The International Journal of Research and Practice. Jul 2017 21(5):611-621.
Availability: SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: http://sagepub.com
Peer Reviewed: Y
Page Count: 11
Publication Date: 2017
Document Type: Journal Articles
Reports - Research
Descriptors: Rural Areas, Autism, Pervasive Developmental Disorders, Foreign Countries, Intervention, Child Psychology, Psychologists, Child Behavior, Behavior Problems, Behavior Modification, Parent Child Relationship, Literacy, Cost Effectiveness, Parent Role, Socioeconomic Status, Cultural Background, Community Programs, Child Development, Material Development
Geographic Terms: Bangladesh
DOI: 10.1177/1362361316683890
ISSN: 1362-3613
Abstract: Low- and middle-income countries often have limited resources, underdeveloped health systems and scarce knowledge of autism spectrum disorder. The objectives of this preliminary study were to develop and adapt intervention materials and to train a native clinician to implement a community-based parent-mediated behavioural intervention in rural Gaibandha, Bangladesh. Intervention materials to support parents' use of behavioural strategies were developed and refined by US behavioural intervention experts and Bangladesh field experts. Study investigators trained a native child psychologist in developmental milestones and behavioural intervention techniques. The native clinician delivered a 1-day group education session attended by 10 families of children aged 7-9 years with autism spectrum disorder, followed by two one-on-one training sessions with each family to train and practice individualized strategies for targeted challenging behaviours. Preliminary qualitative results indicate the importance of materials that are culturally appropriate and at an adequate literacy level. All families expressed strong desires to have learned the behavioural strategies when their child was younger and vocalized their need for further support and tools to help their children. This study is a preliminary step to creating sustainable and low-cost autism spectrum disorder interventions in rural Bangladesh, and possibly for families in regions with similar cultural and socioeconomic status backgrounds.
Abstractor: As Provided
Number of References: 51
Entry Date: 2017
Accession Number: EJ1144876
Database: ERIC
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  Value: <anid>AN0123635330;f9d01jul.17;2017Jun19.08:05;v2.2.500</anid> <title id="AN0123635330-1">Lessons learned while developing, adapting and implementing a pilot parent-mediated behavioural intervention for children with autism spectrum disorder in rural Bangladesh </title> <p>Low- and middle-income countries often have limited resources, underdeveloped health systems and scarce knowledge of autism spectrum disorder. The objectives of this preliminary study were to develop and adapt intervention materials and to train a native clinician to implement a community-based parent-mediated behavioural intervention in rural Gaibandha, Bangladesh. Intervention materials to support parents’ use of behavioural strategies were developed and refined by US behavioural intervention experts and Bangladesh field experts. Study investigators trained a native child psychologist in developmental milestones and behavioural intervention techniques. The native clinician delivered a 1-day group education session attended by 10 families of children aged 7–9 years with autism spectrum disorder, followed by two one-on-one training sessions with each family to train and practice individualized strategies for targeted challenging behaviours. Preliminary qualitative results indicate the importance of materials that are culturally appropriate and at an adequate literacy level. All families expressed strong desires to have learned the behavioural strategies when their child was younger and vocalized their need for further support and tools to help their children. This study is a preliminary step to creating sustainable and low-cost autism spectrum disorder interventions in rural Bangladesh, and possibly for families in regions with similar cultural and socioeconomic status backgrounds.</p> <p>autism spectrum disorder; community-based intervention; international study; low- and middle-income countries; parent-mediated intervention</p> <p>It is estimated that the global prevalence of autism spectrum disorder (ASD) is 6.2 cases per 1000 people, with a disproportionate and largely unaccounted number of cases in low- and middle-income countries (LMICs) ([<reflink idref="bib15" id="ref1">15</reflink>] ). Due to limited resources, developing health systems and little knowledge on ASD, very little work has been done in assessing ASD in these populations ([<reflink idref="bib42" id="ref2">42</reflink>] ). There have been several studies conducted regarding the prevalence of any disability in LMICs ([<reflink idref="bib5" id="ref3">5</reflink>] ; [<reflink idref="bib23" id="ref4">23</reflink>] ; [<reflink idref="bib36" id="ref5">36</reflink>] ; [<reflink idref="bib37" id="ref6">37</reflink>] ), yet ASD-specific prevalence studies in LMICs are lacking. Without knowing the extent of the ASD burden or having readily identified children with ASD, it is oftentimes difficult to craft and implement efficient interventions.</p> <p>There have been few documented approaches to ASD intervention in LMICs and the majority of them involve children with the resources to visit paediatricians and healthcare providers ([<reflink idref="bib6" id="ref7">6</reflink>] ; [<reflink idref="bib21" id="ref8">21</reflink>] ; [<reflink idref="bib33" id="ref9">33</reflink>] ). This group is likely not representative of the majority of the children with ASD in LMIC populations. Caregivers of children with ASD in the West Bank cited lack of governmental political will, absence of formal screening tools, dismissal of parental concerns, financial constraints and limited service availability as reasons for inadequate intervention access and use ([<reflink idref="bib9" id="ref10">9</reflink>] ). One way to make interventions sustainable in these settings is to build community- and family-based intervention support networks to aid caregivers, train local community members and family members to deliver the intervention and create greater community awareness leading to improved inclusivity ([<reflink idref="bib32" id="ref11">32</reflink>] ). Previous work to adapt pre-existing interventions found that parents may be efficient and effective therapists in an LMIC setting ([<reflink idref="bib9" id="ref12">9</reflink>] ). Additionally, previous ASD intervention adaptation efforts in LMICs have concluded that the materials from high-income countries (HICs) may need to be significantly altered to enhance efficacy, feasibility and scalability ([<reflink idref="bib12" id="ref13">12</reflink>] ).</p> <p>In Bangladesh, 20% of children aged 2–9 years screened positive for a disability between 2005 and 2008 ([<reflink idref="bib16" id="ref14">16</reflink>] ). These disabilities are defined by impairment or inability in areas of speech, cognition and hearing, vision, motor/physical and seizure disorders. With such a prevalence of disabilities, a wide range of services are vital. In Bangladesh, services are provided by the public and private sector, non-governmental organizations (NGOs) and donor agencies; however, physicians and specialists are concentrated disproportionally in urban areas and are much more likely to treat upper socioeconomic status (SES) families ([<reflink idref="bib1" id="ref15">1</reflink>] ). There is a substantial lack of a rural health system infrastructure for children with disabilities that is exacerbated by a dispersed population of children with disabilities, limited resources and inconsistent schooling for children ([<reflink idref="bib3" id="ref16">3</reflink>] ). The combination of these factors means that concerns about child development often go unaddressed, and receiving a diagnosis of ASD and/or travelling to service providers is often not feasible or unaffordable for most families.</p> <p>Because of these hurdles to service, it is vital to provide support for individuals with ASD that is sustainable and low-cost to low-resource settings in Bangladesh, as well as for other LMICs. In most LMICs, there are very few trained professionals who have expertise in ASD diagnosis or related intervention, let alone parental resources to pay for those treatments ([<reflink idref="bib10" id="ref17">10</reflink>] ; [<reflink idref="bib31" id="ref18">31</reflink>] ). Additionally, technological interventions such as computer or tablet-based communication tools are not useable because the high expense to purchase and maintain the devices, limited access to electricity and the possible foreignness of the computer or tablet to the user may hinder treatment progress ([<reflink idref="bib31" id="ref19">31</reflink>] ). One way to provide needed services is to train parents in behavioural strategies. This has shown to be economically feasible on small scales ([<reflink idref="bib12" id="ref20">12</reflink>] ; [<reflink idref="bib21" id="ref21">21</reflink>] ) and effective in improving ASD symptoms in children in LMICs ([<reflink idref="bib21" id="ref22">21</reflink>] ; [<reflink idref="bib33" id="ref23">33</reflink>] ; [<reflink idref="bib38" id="ref24">38</reflink>] )</p> <p>Parent-mediated programmes may be efficient, efficacious and sustainable methods to address the needs of individuals with ASD ([<reflink idref="bib4" id="ref25">4</reflink>] ; [<reflink idref="bib8" id="ref26">8</reflink>] ; [<reflink idref="bib34" id="ref27">34</reflink>] ; [<reflink idref="bib43" id="ref28">43</reflink>] ; [<reflink idref="bib49" id="ref29">49</reflink>] ; [<reflink idref="bib50" id="ref30">50</reflink>] ; [<reflink idref="bib51" id="ref31">51</reflink>] ). Having parents or caregivers administer the intervention has the potential to increase the likelihood of generalization in various contexts and circumstances and increase the amount of time a child can be exposed to therapeutic techniques ([<reflink idref="bib8" id="ref32">8</reflink>] ; [<reflink idref="bib30" id="ref33">30</reflink>] ). Such parent-mediated interventions can be carried out in a child’s natural environment (e.g. home) using naturalistic behavioural methods that promote improvements in multiple domains. Parent-mediated intervention has shown promising sustainable effects ([<reflink idref="bib8" id="ref34">8</reflink>] ), with a study showing strong parental adherence in the United States ([<reflink idref="bib46" id="ref35">46</reflink>] ). The use of parent-mediated ASD interventions has been proposed as a solution for addressing the needs of children with ASD in LMICs ([<reflink idref="bib38" id="ref36">38</reflink>] ). In India and Pakistan, three studies have pointed to the feasibility and acceptance of parent-mediated interventions in South-East Asia, with each of these studies reporting significant gains in child communication and child social skills ([<reflink idref="bib21" id="ref37">21</reflink>] ; [<reflink idref="bib33" id="ref38">33</reflink>] ; [<reflink idref="bib38" id="ref39">38</reflink>] ). A study by [<reflink idref="bib21" id="ref40">21</reflink>] found that children with at least 6 months of a parent-mediated behavioural intervention in naturalistic settings showed significant improvement in their developmental quotient, social quotient and expressive language quotient. Also in India, Nair et al. (2014) found that a low-intensity home-based intervention delivered by mothers that targeted specific clusters of ASD symptoms decreased ASD severity and increased social and language skills. In a randomized control trial conducted in both Pakistan and India, an intervention that aimed to increase communication between parent and child with ASD by coaching the parent improved spontaneous child communication with the parent ([<reflink idref="bib38" id="ref41">38</reflink>] ). Similar results have been found in Tanzania among children age 7 years whose parents were trained in behavioural support strategies resulting in increased awareness of ASD and management of parental-identified child behaviours ([<reflink idref="bib17" id="ref42">17</reflink>] ).</p> <p>The objectives of this preliminary study were to develop and adapt intervention materials and train a native clinician to deliver a community-based parent-mediated behavioural intervention in rural Bangladesh. In this article, we discuss the process of creating parent training materials and teaching a native clinician to deliver the intervention as well as the qualitative results of our work thus far. We believe that this study is a preliminary step to creating a sustainable and low-cost intervention to aid families of children with ASD in rural Bangladesh.</p> <hd id="AN0123635330-2">Methods</hd> <hd id="AN0123635330-3">Population</hd> <p>Gaibandha is a rural region located in the Rangpur district of Northwest Bangladesh. This region is in the lowest socioeconomic tertile of rural communities in Bangladesh ([<reflink idref="bib26" id="ref43">26</reflink>] ) with the average household income being ~GBP $100 (~USD $123) per month ([<reflink idref="bib2" id="ref44">2</reflink>] ). In addition, Gaibandha has a literacy rate of 46.8% for males and 39.5% for females ([<reflink idref="bib3" id="ref45">3</reflink>] ). Of children and young adults aged 5–24 years, 52.7% attend at least some school ([<reflink idref="bib3" id="ref46">3</reflink>] ).</p> <p>This study was built on the infrastructure of the Johns Hopkins University ([<reflink idref="bib20" id="ref47">20</reflink>] ) JiVitA project. JiVitA has conducted public health research in rural Bangladesh since 2001 and has built extensive health systems to implement effective community-based nutrition interventions for mothers and children. It is one of the largest population maternal and child health programmes in South Asia ([<reflink idref="bib20" id="ref48">20</reflink>] ) and is based out of and conducts research in Gaibandha. JiVitA was formed to address micronutrient deficiencies and improve the health outcomes of mothers, newborns and children in Gaibandha ([<reflink idref="bib26" id="ref49">26</reflink>] ).</p> <p>Participants of this pilot intervention project were recruited from a subsample of the Monisha Study. Monisha (মনীষা) means intelligence or talent in Bangla and is the acronym of Measurement Of Neurodevelopmental Function for Screening of Autism Spectrum Disorder. The study followed children aged 7–9 years from one of the JiVitA cohorts. These children are the offspring of the pregnancy cohort that housed a community-based randomized controlled trial of prenatal vitamin A or beta-carotene supplementation ([<reflink idref="bib26" id="ref50">26</reflink>] ). The Monisha study identified 9800 eligible children to participate in an epidemiologic study that aimed to identify ASD cases. Of the 9800 children, 8218 consented and completed the Social Communication Questionnaire (SCQ; [<reflink idref="bib40" id="ref51">40</reflink>] ). The SCQ is a brief screener for ASD that was modified by ASD experts and the local clinician to be culturally appropriate for the Monisha study. All children who were SCQ positive (⩾15), and some who were SCQ negative, were invited for a full diagnostic evaluation using the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2; [<reflink idref="bib28" id="ref52">28</reflink>] ) and the Autism Diagnostic Interview-Review (ADI-R; [<reflink idref="bib41" id="ref53">41</reflink>] ). For this pilot study, we invited 10 families who had one child with an ASD diagnosis determined by the Monisha study to receive training in behavioural strategies.</p> <hd id="AN0123635330-4">Training</hd> <hd id="AN0123635330-5">Investigator training</hd> <p>Study investigators (a trained psychologist and two public health researchers) received training in behaviour modification strategies that are based on the principles of applied behaviour analysis (ABA; [<reflink idref="bib39" id="ref54">39</reflink>] ). The purpose of the study investigator training was to provide knowledge and competency in selected behavioural strategies as a basis for the foundations of the Bangladesh training materials. The behavioural approach was selected for the study investigator training due to evidence showing parents’ effective ability to implement these types of strategies ([<reflink idref="bib4" id="ref55">4</reflink>] ; [<reflink idref="bib7" id="ref56">7</reflink>] ; [<reflink idref="bib11" id="ref57">11</reflink>] ; [<reflink idref="bib19" id="ref58">19</reflink>] ; [<reflink idref="bib21" id="ref59">21</reflink>] ; [<reflink idref="bib24" id="ref60">24</reflink>] ; [<reflink idref="bib35" id="ref61">35</reflink>] ; [<reflink idref="bib38" id="ref62">38</reflink>] ; [<reflink idref="bib43" id="ref63">43</reflink>] , [<reflink idref="bib44" id="ref64">44</reflink>] ; [<reflink idref="bib49" id="ref65">49</reflink>] ; [<reflink idref="bib50" id="ref66">50</reflink>] ). Several studies have also provided an argument for the resource efficiency of using such techniques in parent-mediated interventions ([<reflink idref="bib6" id="ref67">6</reflink>] ; [<reflink idref="bib21" id="ref68">21</reflink>] ; [<reflink idref="bib38" id="ref69">38</reflink>] ).</p> <p>Experts in behavioural intervention from San Diego State University and University of California – San Diego conducted the training for study investigators. Two of the study investigators were previously ABA trained while one was certified in Pivotal Response Training ([<reflink idref="bib25" id="ref70">25</reflink>] ). Training lasted for 16 h over 3 days on topics related to behavioural intervention and positive behaviour support. Key content of this training included understanding the functions of behaviour, the framework of the antecedent-behaviour-consequence model, viewing challenging behaviour as communication and the use of behaviour modification strategies in naturalistic settings. Sessions included role-playing, discussions, modelling and hands-on practice with feedback from the experts. Study investigators also spent training time discussing development and adaptation of the Bangladesh intervention with the San Diego-based experts. Topics of discussion included cultural relevance of behaviour interventions, addressing low literacy populations, addressing parents who are not familiar with ASD in a setting where ASD may be stigmatized and delivering an intervention in a community-based setting without drawing excessive attention to the family. As a part of the training, study investigators practiced using behavioural strategies with children with ASD in naturalistic settings utilizing no technology or toys since such items are scarce in Gaibandha. Study investigators drew from this experience and training to further develop and adapt the Bangladesh intervention materials.</p> <hd id="AN0123635330-6">Native clinician training</hd> <p>As a preliminary step, a study investigator spent 2 months in Gaibandha living in the JiVitA catchment area to train a master’s level clinical child psychologist and work with him to develop and adapt intervention materials. This native clinician was chosen to deliver this intervention based on his knowledge of ASD and his extensive rapport with the families selected for the intervention. As part of the Monisha study, the native clinician had been trained in and administered ADOS-2 and ADI-R. For both these instruments, he is research reliable as evaluated by a US professional trainer. Through administering these tools, the native clinician developed immense knowledge of the ASD phenotype and impact on families, which made him an excellent candidate for facilitating this intervention. Furthermore, through administering these diagnostic tests, the native clinician became very familiar with the families and children whose parents would receive the training programme. His understanding of each family’s dynamics and his relationship with these families was critical for building trust and buy in for the successful implementation of this intervention.</p> <p>Over the course of 100 h in the summer of 2015, the native clinician received training on child development milestones, behavioural interventions and the adapted training materials for parents developed by study investigators. After the initial training, further training sessions occurred once a week for 2 months in the fall of 2015 and 2 full weeks prior to intervention implementation in May of 2016. Training activities are provided in [<reflink idref="bib1" id="ref71">1</reflink>] . Literature review sessions were used for the native clinician to learn more about ASD, ASD interventions and the basic principles of behaviour. Training sessions also included ADOS-2 and ADI-R video reviews from the Monisha study of children who were eligible to participate in the intervention. During the video review sessions, challenging behaviours were identified and potential solutions were discussed. These training sessions also included step-by-step introduction to the behaviour modification strategies that would be used to address the specific behaviours seen (see [<reflink idref="bib2" id="ref72">2</reflink>] ). Additionally, the study investigator accompanied the native clinician in the field to observe the Monisha project’s ADOS-2 testing and conducted informal interviews with JiVitA clinical staff, with the goal of ensuring fit between the intervention and the resources that were available in the field.</p> <hd id="AN0123635330-7"> Specific training goals and activities for clinician training.</hd> <ct id="AN0123635330-8"></ct> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /></colgroup><tr><th align="left">Training goal</th><th align="left">Activity</th></tr><tr><td>To gain knowledge of the basis of ASD behavioural interventions</td><td>Article reviews and discussion</td></tr><tr><td rowspan="2">To gain knowledge about different parent-mediated intervention models used in ASD work To gain skills in identifying the antecedent, behaviour and consequence of problem behaviours To gain skills in identifying points of intervention to change a problem behaviour To gain skills in executing methods for changing problem behaviours (i.e. establishing a routine, blocking problem behaviours, using a first, then framework, and using positive reinforcement)</td><td>Article reviews and discussion</td></tr><tr><td>Didactic lectures and discussion Video reviews (stopping at instances when a problem behaviour arises and identifying the antecedent, behaviour and consequence) Role playing (trainer acts out a problem behaviour, trainee identifies point of intervention and a method for changing the problem behaviour</td></tr></table> </ephtml> </p> <p>-1 ASD: autism spectrum disorder.</p> <hd id="AN0123635330-9"> Intervention techniques taught to parents of children with ASD in rural Bangladesh.</hd> <ct id="AN0123635330-10"></ct> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /></colgroup><tr><th align="left">Technique</th><th align="left">Description</th></tr><tr><td>First_____ then____</td><td>Parent provides child with a two-item schedule, with the second being an activity or item that the child desires</td></tr><tr><td>Schedules</td><td>The child is given a list of upcoming activities and is made aware multiple times of where he/she stands in their schedule</td></tr><tr><td>Routine</td><td>Repeated use of the same schedule over many days/weeks</td></tr><tr><td>Earning rewards</td><td>Use a favourite thing or activity of a child to motivate his/her behaviour throughout a period of time</td></tr><tr><td>Seizure response</td><td>Place child on the floor, turn him/her to their side, clear airway, cushion head</td></tr><tr><td>Role playing</td><td>The clinician or parent will reenact a scenario with a child</td></tr><tr><td>Building vocabulary through play</td><td>Clinician or parent will play with the child using a ball or bubbles and work to have the child ask for a turn, or develop some speech through counting</td></tr></table> </ephtml> </p> <p>-2 ASD: autism spectrum disorder.</p> <hd id="AN0123635330-11">Material development</hd> <p>Study investigators based in Bangladesh and the United States worked together to develop and adapt intervention materials that were culturally appropriate and acceptable for the target community. Consultations with the native clinician, JiVitA scientists and US-based behavioural intervention experts were conducted to ensure that the materials were acceptable and consistent with evidence-based intervention techniques. Consultations were conducted via email, Skype and in-person meetings to determine the best way to address cultural barriers and adapt intervention techniques. Previous ASD behavioural intervention materials used in Taiwan for SES disadvantaged families as well as in US-based trainings were used as a foundation for materials’ development.</p> <p>All examples were modified to be culturally and socioeconomically relevant. Images were changed to reflect the ethnicity of the population and the culture. For example, a picture of a father and a child was replaced with a picture of a mother and a child to be consistent with cultural family dynamics in which mothers are the primary caregivers of children. Images of toys or items that a family would likely not be able to afford were removed and all pictures showed women wearing religiously appropriate attire (i.e. changing pictures of women wearing jeans to women wearing saris). Images that focused on routines that are common in HICs such as brushing teeth or riding the bus to school were removed since they are not common in Gaibandha. Instead, many of the examples focused around eating, cleaning or cooking (see Figure 1).</p> <p>Examples of cultural adaptation and simplification of language of group education session materials.</p> <p>Importantly, language was simplified to a lower literacy level, as the previous materials were geared towards parents with higher education levels than the local families. The materials were adapted to rely heavily on pictures, videos and the spoken language of the native clinician rather than written words. Additionally, a visual approach to the antecedent–behaviour–consequence model was created to make the information picture-based as much as possible, such that parents with low literacy levels could comprehend the information (see Figures 1 and 2).</p> <p>Adaptation of antecedent behaviour consequence model for parents in rural Bangladesh.</p> <p>The materials were first developed and adapted in English, translated into Bangla and then further edited and refined by the native clinician in Bangla. The preliminary versions were verbally back-translated into English by translators and the native clinician to ensure that concepts were being translated correctly. The materials were then presented by the native clinician to a group of JiVitA staff members to determine cultural appropriateness and comprehension of the material. Further modifications in language and pictures were made based on feedback from the JiVita staff.</p> <hd id="AN0123635330-12">Parent training intervention structure</hd> <p>Over the course of 2.5 weeks, each family received a single, 1-day group education session (five families in each session) and two 1:1 individual follow-up visits with the native clinician, which were observed and coached by the study investigators. Group education sessions and the first follow-up visits took place in JiVitA community centres located in close proximity to the family’s home. These centres are small one-room offices, sometimes with electricity, that serve as a home base for JiVitA researchers and data collection activities at the neighbourhood level. The second follow-up visits took place at the central JiVitA headquarters due to safety concerns for the non-native study investigators. Scheduling was extremely flexible and contingent on primary caregiver availability. Parents were scheduled 2 days in advance with a reminder the day before. A field distributor, whose job was to ensure attendance, brought families to the sessions and costs were covered by the study. In between these sessions, the study team worked to discuss specific intervention plans for each family, address any questions the native clinician had and further refine education materials so they are customized to each family.</p> <hd id="AN0123635330-13">Interviews and surveys</hd> <p>At the end of the second follow-up session, the native clinician conducted an informal interview with parents and caregivers about the impact and satisfaction of the education sessions and follow-up sessions in a 10 open-question format. In the interview, parents and caregivers were also asked about other approaches they would like to learn, feasibility of attending the sessions and interest in future opportunities. The interviews were translated into English and patterns in the answers were grouped under similar themes. After all family sessions were complete, study investigators delivered an open-ended question survey to the native clinician about his experience with the project, criticisms and areas for improvement. His answers were written in English and key patterns and themes were highlighted.</p> <hd id="AN0123635330-14">Results</hd> <hd id="AN0123635330-15">Materials</hd> <p>Due to the lack of knowledge or awareness of ASD among participating families and the severe stigma associated with disabilities in the community, the term ASD was not used in any materials for parents. Instead, the materials focused on ‘problem behaviours’ that could be addressed using the strategies presented. From the Monisha ADI-Rs, parents were much more concerned with their child’s problem behaviours than other ‘core ASD characteristics’ such as communication skills. The materials presented the information through the lens of problem behaviour to help promote parent participation. The use of the term ASD may have also prompted parents to shy away from fear of the possible stigma of labelling a disability.</p> <p>The primary materials consisted of PowerPoint slides that were projected during education sessions. Parents were presented with a paper copy of the PowerPoint slides and a step-by-step booklet outlining how to target specific problem behaviours customized for their setting and child. The booklet comprised culturally appropriate pictures with limited words in Bangla to make the material useful for non-literate parents.</p> <hd id="AN0123635330-16">Intervention delivery</hd> <p>The group education sessions were composed of three sub-sessions: sub-session 1 focused on presenting developmental milestones to parents, sub-session 2 taught parents how behaviour works using the antecedent, behaviour, consequence model and sub-session 3 taught parents specific strategies to address child problem behaviours. Each sub-session was approximately 1–1.5 h and involved didactic lecture, video examples and group discussion. The total day spanned 6 h and consisted of the three sub-sessions and breaks for snack and lunch that the investigators provided.</p> <p>At the first individual follow-up session, parents discussed their personal concerns for the child. The overwhelming majority of concerns expressed were related to children’s problem behaviours that were interfering with day-to-day family life. Issues that the parents most often raised were aggressive behaviours (hitting, biting), wandering, repetitive behaviours and restricted interests. The native clinician guided parents to identify the antecedents and consequences of behaviours they identified, as introduced in the group sessions. Antecedents for the concerning behaviours included demanding certain foods, demanding money, needing specific sensory stimuli, wanting attention and having difficulty playing with peers. Due to limited resources and time, sessions focused on two or three problem behaviours that were of most concern to the primary caregiver. Basic intervention strategies were adapted for each child to best meet the child’s behavioural needs and intellectual ability. The clinician then modelled these strategies for the parent. Parents were then given an opportunity to practice the technique with the child while receiving feedback. Techniques were chosen based on child’s functional level and nature of the problem behaviour. See [<reflink idref="bib3" id="ref73">3</reflink>] for a list of problem behaviours and their suggested intervention method. The clinician coached the parent through these behaviours as the study investigator stayed near-by and offered the clinician tips and examples to use. Visual support materials (emotion boards, schedules, practice scripts) were developed as indicated after the first follow-up session and were utilized in the second follow-up. At the second individual follow-up session, parents commented on any concerns they had with the strategies they had learned and continued to practice the skills taught in the first follow-up session, with increased use of hands-on practice with feedback.</p> <hd id="AN0123635330-17"> Behaviours that concerned parents of children with ASD in rural Bangladesh and intervention response.</hd> <ct id="AN0123635330-18"></ct> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /></colgroup><tr><th align="left">Behaviour</th><th align="left">Technique</th></tr><tr><td>Wandering</td><td>First, then, schedules</td></tr><tr><td>Aggressive behaviours</td><td>Earning rewards, building vocabulary</td></tr><tr><td>Trouble making friends</td><td>Role playing</td></tr><tr><td>Limited use of words</td><td>Building vocabulary</td></tr><tr><td>Inappropriate language use</td><td>Earning rewards</td></tr><tr><td>Hyperactivity</td><td>Schedules, routines, earning rewards, first then</td></tr></table> </ephtml> </p> <hd id="AN0123635330-19">Parent impression</hd> <p>From the informal interview at the end of the second follow-up session, all parents reported that the training and intervention were helpful, most preferring the one-on-one follow-up sessions to the group education sessions. Parents explained that the practical training and individualized guidance in the one-on-one sessions were more useful and helped them better understand concepts. However, many parents also reported that the opportunity to interact with parents of other children with special needs during the group session was also very beneficial and informative. They believed that it was useful to see that other families had the similar difficulties and to have the opportunity to have their children interact with more similar peers. Almost all parents wished that they had received this training sooner and reported they would continue to practice the skills that they learned during the programme. It must be noted that the native clinician conducted the interviews, which may have biased the results and led to more positive feedback than if an external interviewer was used.</p> <hd id="AN0123635330-20">Native clinician impression</hd> <p>According to the survey completed by the native clinician, the parents were eager for training but the education sessions were too long and the length challenged parents’ focus. He found that using varied ways to teach (i.e. pictures, didactic lecture, videos, and activities) was extremely effective and allowed for parents of varying literacy and education levels to access the materials. Additionally, adding more family members to the training may be beneficial, as it equips more family members with the skills to address children’s problem behaviours.</p> <p>In regards to his training, the native clinician found the reviewing of ADOS and ADI-R videos to be effective in better understanding what to expect from the children and what problem behaviours parents identified as concerns. Additionally, he found reviewing the broader ASD/ASD intervention literature to be very helpful, as scientific literature and reports are rarely available in the region. He would have liked more time to prepare for individual family sessions, specifically more role-play opportunities to prepare for children with more severe impairment or co-existing medical conditions.</p> <hd id="AN0123635330-21">Discussion</hd> <p>This study aimed to develop, adapt and implement a community-based parent training programme in behavioural modification strategies in a rural LMIC setting. This process requires careful consideration of an area’s knowledge about ASD, approach to parenting, acceptance of disability, cultural child behaviour norms and interaction between the family and community. Utilizing a parent-mediated approach may help ensure cost-efficiency and sustainability in LMIC settings.</p> <hd id="AN0123635330-22">Need for intervention</hd> <p>A major take away from this study is the parents’ need and desire for support in addressing their child’s problem behaviours. Parents were very vocal with their support for this intervention and their belief that it will help them in the future. The native clinician also expressed his support for the intervention and his belief that parents were in need of training such as this. There has been increasing interest in identifying ASD in LMICs ([<reflink idref="bib13" id="ref74">13</reflink>] ), but enumerating prevalence does not prepare families to deal with day-to-day challenges related to the child’s problem behaviours. Most parents stated that they wished they had assistance earlier and found having a child with behavioural issues to be detrimental financially and emotionally. Having an opportunity for intervention between age 8 and 10 is helpful; however, this timing may not have maximized the potential benefit of the intervention, as research consistently shows that the younger the age at which ASD interventions are implemented, the greater the impact on optimal outcomes ([<reflink idref="bib14" id="ref75">14</reflink>] ; [<reflink idref="bib39" id="ref76">39</reflink>] ).</p> <p>Additionally, parents often mentioned how beneficial it was to meet and interact with other families of children with ASD. This finding points to the need for parent support groups for parents of children with ASD in LMICs. In HICs, parents of children with developmental disabilities report that participating in support groups helps them reduce their isolation, gain emotional support, improve parenting skills and acquire information about the available services ([<reflink idref="bib27" id="ref77">27</reflink>] ; [<reflink idref="bib45" id="ref78">45</reflink>] ). Another study among parents in the United States found that parents of older children with ASD, such as the ones in this study, were more likely to participate in parent support groups than parents of younger children ([<reflink idref="bib29" id="ref79">29</reflink>] ). Thus, this type of support may be particularly crucial for the age of child targeted in this project.</p> <hd id="AN0123635330-23">Sustainability and scale-up</hd> <p>The ultimate goal of developing such interventions for LMICs is sustainability and expansion. The native clinician noted that he found the review of ADOS-2 and ADI-R videos helpful and that the training he received to deliver the parent training programme was of particular use. However, the extensive training time and modalities used may hinder scale-up and sustainment of such a programme. For organizations or study teams from LMICs who often have limited funding support, it may not be feasible to have study investigators receive training from behavioural intervention experts from outside of the country while there is a lack of such experts in their own country. On a larger scale, it may be difficult to conduct such extensive trainings and supervision. Although this study had resources that others may not, the sustainability and scale-up of interventions like this one may be achieved by utilizing a train the trainer approach. Through investing resources in extensively training an LMIC clinician, opportunities are opened to develop knowledge by transferring the trainer programmes to a smaller more sustainable scale.</p> <hd id="AN0123635330-24">Challenges</hd> <p>There were several prominent challenges that were faced throughout this project. Working in a setting where ASD was not widely understood made the use of the existing parent-mediated ASD intervention materials designed in HICs difficult and the materials required a great deal of modification and adaptation. Furthermore, the lower literacy level of the parents made it problematic to translate concepts to a level that could be understood in a limited timeframe. These challenges meant that a lot of foundational work (i.e. educating local professionals about ASD intervention methods) had to be completed during the process of material development. In an ideal circumstance, it would be preferable to video record the training so the team can review the sessions and obtain feedback and clarification from US-based experts. However, video sharing and discussion via Internet was challenging given the poor access to these options.</p> <p>Furthermore, stigma associated with disabilities is seen in many communities worldwide, but is more profound in LMICs ([<reflink idref="bib47" id="ref80">47</reflink>] ; [<reflink idref="bib48" id="ref81">48</reflink>] ). Foreigners garner massive attention and this attention could indicate to the community that something is wrong with the family. Therefore, it was necessary to ensure that the intervention was not too intrusive or would draw too much attention to the children. Due to safety concerns in the country during the study time period, the study team did not visit households but rather conducted the intervention in JiVitA’s community centres. This decision restricted the intervention to smaller rooms with only primary caregivers, which may not represent the most natural environment where the child’s daily activities take place.</p> <p>Finally, the team faced a major interruption in the implementation schedule due to safety concerns, in part, due to political unrest in the country. Such concerns restricted the movements of the foreign members of the study team and made it difficult to work on material development and study implementation. We also had to modify the original design by reducing the total number of visits and increasing time duration for each visit due to the high level of safety concerns while travelling to the field. For those planning to do such interventions, it may be beneficial to have several shorter sessions to promote parental attention and engagement with the material. Electricity and Internet access were limited which added in another layer of difficulty for the communications with the investigators based in the United States.</p> <hd id="AN0123635330-25">Gains from the pilot study</hd> <p>Although there were several obstacles in implementing the study, great accomplishments have been made. This study furthers our belief that ASD interventions need to be specific to the community that they are being implemented in. Previous studies in other South-East Asian countries such as India and Pakistan could not be replicated in this setting because the extensive healthcare infrastructure available in those studies is lacking in Bangladesh ([<reflink idref="bib21" id="ref82">21</reflink>] ; [<reflink idref="bib33" id="ref83">33</reflink>] ; [<reflink idref="bib38" id="ref84">38</reflink>] ). This work outlined a strategy for addressing the needs of children with ASD in communities that lack the basic health infrastructure needed for many interventions seen in both HICs and LMICs. Our population sample was of children who did not have the resources to receive hospital or clinic care, and the study demonstrates how an intervention can be implemented in a setting where ASD is not well understood and is highly stigmatized. Parents were grateful for the help they received even though they may not have been familiar with ASD and may have worried about the potential negative attention the study brought. Furthermore, similar studies conducted in India and Pakistan focused heavily on communication development ([<reflink idref="bib21" id="ref85">21</reflink>] ; [<reflink idref="bib33" id="ref86">33</reflink>] ; [<reflink idref="bib38" id="ref87">38</reflink>] ), whereas communication was found to not be a primary concern for the parents in Gaibandha. Therefore, it was necessary that the parent training programme had an explicit focus on problem behaviours rather than communication for this setting and population (though, undoubtedly, the two are linked). This study adds to the literature by demonstrating how an intervention targeting problem behaviours could be implemented in an LMIC lacking basic health systems’ infrastructure and where families were primarily concerned with reducing problem behaviours.</p> <p>Evidence from the existing literature has shown that both group and individual family training are effective models for supporting parents in parent-mediated interventions ([<reflink idref="bib8" id="ref88">8</reflink>] ). This intervention used a combination of both techniques. In addition, there is evidence that having parents practice skills with their child with ASD during the session is associated with larger effect size of the intervention ([<reflink idref="bib18" id="ref89">18</reflink>] ). During both individual follow-up sessions, parents were asked to practice the skills with the child until they understood the techniques and had successfully implemented them with the child. The long native clinician training was also a strength, as it well prepared him to deliver the intervention protocol, construct individualized plans for problem behaviour reduction and provide immediate feedback to parents, all of which are listed as prerequisites for parent educators ([<reflink idref="bib22" id="ref90">22</reflink>] ).</p> <hd id="AN0123635330-26">Conclusion and recommendations</hd> <p>The development, adaptation and implementation of this parent-mediated ASD intervention can be used to provide for future material development for populations in LMICs. The results and challenges described aim to give insight into the complexities of developing and adapting materials for ASD populations and their families in LMICs. The process for creating culturally relevant materials is extensive and requires time and resources as well as a connection to individuals who work and/or live in the community of implementation. In the process of determining how to adapt and translate materials, researchers need to be aware of language usage and cultural differences across regions within the same country. It should be noted that although this intervention may have been effective in Bangladesh, it might not translate well to other LMICs or other regions of South-East Asia. This underscores the need and importance of developing materials that are reflective of the specific community in which one works. This is exemplified in the increased usage of culturally appropriate pictures (or videos when possible) and decreased usage of text.</p> <p>For researchers who are planning to develop community-based ASD interventions in LMICs, there are several key recommendations. Utilizing qualitative methods to develop a clear understanding of the community before full implementation is necessary as it allows for greater community acceptance and ensures the developed materials are culturally relevant. Moreover, investing the resources to task-share and train local community-based workers promotes sustainability and acceptability of developed materials. Future research in this area should focus on improving methods for developing and adapting materials for ASD interventions that are easily transferrable to other settings. Special focus should be on how to utilize non-professionals, such as parents, to deliver interventions. Additional research needs to highlight ways in which community stakeholders and members affected with or by ASD can be a part of the material development and adaptation of interventions to maximize impact.</p> <hd id="AN0123635330-27">Acknowledgements</hd> <p>The authors extend their deepest gratitude to the families who voluntarily participated in the study and made this project a great success. The authors especially thank Drs Parul Christian and Keith West for their immense support and willingness to allow them to access the JiVitA project population. The authors would like to sincerely thank the supportive staff of the JiVitA project, both the US-based team and the Bangladesh team for their hard work and assistance. The authors incredibly thank the JiVitA members: Ms Sucheta Mehra, Dr Saijuddin Shaikh, Mr Rezwanul Huq and Ms Maithilee Mitra for their technical support and extensive knowledge of Gaibandha throughout the life of this project. 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  Label: Title
  Group: Ti
  Data: Lessons Learned While Developing, Adapting and Implementing a Pilot Parent-Mediated Behavioural Intervention for Children with Autism Spectrum Disorder in Rural Bangladesh
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  Data: English
– Name: Author
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  Data: <searchLink fieldCode="AR" term="%22Blake%2C+Jasmine+M%2E%22">Blake, Jasmine M.</searchLink><br /><searchLink fieldCode="AR" term="%22Rubenstein%2C+Eric%22">Rubenstein, Eric</searchLink><br /><searchLink fieldCode="AR" term="%22Tsai%2C+Peng-Chou%22">Tsai, Peng-Chou</searchLink><br /><searchLink fieldCode="AR" term="%22Rahman%2C+Hafizur%22">Rahman, Hafizur</searchLink><br /><searchLink fieldCode="AR" term="%22Rieth%2C+Sarah+R%2E%22">Rieth, Sarah R.</searchLink><br /><searchLink fieldCode="AR" term="%22Ali%2C+Hasmot%22">Ali, Hasmot</searchLink><br /><searchLink fieldCode="AR" term="%22Lee%2C+Li-Ching%22">Lee, Li-Ching</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22Autism%3A+The+International+Journal+of+Research+and+Practice%22"><i>Autism: The International Journal of Research and Practice</i></searchLink>. Jul 2017 21(5):611-621.
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  Data: SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: http://sagepub.com
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  Label: Peer Reviewed
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  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 11
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2017
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  Data: Journal Articles<br />Reports - Research
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  Label: Descriptors
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  Data: <searchLink fieldCode="DE" term="%22Rural+Areas%22">Rural Areas</searchLink><br /><searchLink fieldCode="DE" term="%22Autism%22">Autism</searchLink><br /><searchLink fieldCode="DE" term="%22Pervasive+Developmental+Disorders%22">Pervasive Developmental Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Intervention%22">Intervention</searchLink><br /><searchLink fieldCode="DE" term="%22Child+Psychology%22">Child Psychology</searchLink><br /><searchLink fieldCode="DE" term="%22Psychologists%22">Psychologists</searchLink><br /><searchLink fieldCode="DE" term="%22Child+Behavior%22">Child Behavior</searchLink><br /><searchLink fieldCode="DE" term="%22Behavior+Problems%22">Behavior Problems</searchLink><br /><searchLink fieldCode="DE" term="%22Behavior+Modification%22">Behavior Modification</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Child+Relationship%22">Parent Child Relationship</searchLink><br /><searchLink fieldCode="DE" term="%22Literacy%22">Literacy</searchLink><br /><searchLink fieldCode="DE" term="%22Cost+Effectiveness%22">Cost Effectiveness</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Role%22">Parent Role</searchLink><br /><searchLink fieldCode="DE" term="%22Socioeconomic+Status%22">Socioeconomic Status</searchLink><br /><searchLink fieldCode="DE" term="%22Cultural+Background%22">Cultural Background</searchLink><br /><searchLink fieldCode="DE" term="%22Community+Programs%22">Community Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Child+Development%22">Child Development</searchLink><br /><searchLink fieldCode="DE" term="%22Material+Development%22">Material Development</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Bangladesh%22">Bangladesh</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1177/1362361316683890
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1362-3613
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Low- and middle-income countries often have limited resources, underdeveloped health systems and scarce knowledge of autism spectrum disorder. The objectives of this preliminary study were to develop and adapt intervention materials and to train a native clinician to implement a community-based parent-mediated behavioural intervention in rural Gaibandha, Bangladesh. Intervention materials to support parents' use of behavioural strategies were developed and refined by US behavioural intervention experts and Bangladesh field experts. Study investigators trained a native child psychologist in developmental milestones and behavioural intervention techniques. The native clinician delivered a 1-day group education session attended by 10 families of children aged 7-9 years with autism spectrum disorder, followed by two one-on-one training sessions with each family to train and practice individualized strategies for targeted challenging behaviours. Preliminary qualitative results indicate the importance of materials that are culturally appropriate and at an adequate literacy level. All families expressed strong desires to have learned the behavioural strategies when their child was younger and vocalized their need for further support and tools to help their children. This study is a preliminary step to creating sustainable and low-cost autism spectrum disorder interventions in rural Bangladesh, and possibly for families in regions with similar cultural and socioeconomic status backgrounds.
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  Data: As Provided
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  Data: 51
– Name: DateEntry
  Label: Entry Date
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  Data: 2017
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  Label: Accession Number
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  Data: EJ1144876
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1144876
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        Value: 10.1177/1362361316683890
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        PageCount: 11
        StartPage: 611
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      – SubjectFull: Rural Areas
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      – TitleFull: Lessons Learned While Developing, Adapting and Implementing a Pilot Parent-Mediated Behavioural Intervention for Children with Autism Spectrum Disorder in Rural Bangladesh
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