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Feasibility and Acceptability of a Synchronous Online Parent-Mediated Early Intervention for Children with Autism in a Low Resource Setting during COVID-19 Pandemic

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Title: Feasibility and Acceptability of a Synchronous Online Parent-Mediated Early Intervention for Children with Autism in a Low Resource Setting during COVID-19 Pandemic
Language: English
Authors: Sengupta, Koyeli (ORCID 0000-0002-7497-6079), Javeri, Aakankshi, Mascarenhas, Cristabelle, Khaparde, Ojaswita, Mahadik, Sanchita
Source: International Journal of Disability, Development and Education. 2023 70(6):946-962.
Availability: Routledge. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals
Peer Reviewed: Y
Page Count: 17
Publication Date: 2023
Document Type: Journal Articles
Reports - Research
Descriptors: COVID-19, Pandemics, Synchronous Communication, Online Courses, Parent Role, Early Intervention, Students with Disabilities, Autism Spectrum Disorders, Cultural Relevance, Program Implementation, Fidelity, Parent Attitudes, Program Effectiveness, Parents as Teachers, Foreign Countries, Educational Technology, Young Children, Communication Skills
Geographic Terms: India
DOI: 10.1080/1034912X.2021.1937957
ISSN: 1034-912X
1465-346X
Abstract: Very few studies exist on tele-health models of parent-mediated interventions delivered in low resource developing countries. The global COVID-19 pandemic catalysed a pilot of an online delivery of an evidence-based parent-mediated intervention (Project ImPACT) for children with Autism Spectrum Disorder in Mumbai, India. Context and culture-specific adaptations were made in program structure and a mixed-methods approach was adopted to evaluate acceptability, feasibility and preliminary efficacy of this model. Quantitative results (n = 12) showed excellent completion rates, with significant improvement in parent fidelity to intervention and child social-communication skills. Analysis of qualitative data from focus groups with parents on completion revealed that parents found the online mode convenient and acceptable, found the synchronous model of sessions especially beneficial and perceived improvements in their own parenting skills and children's developmental profiles. Though piloted in pandemic times, the results from the study have implications for future service delivery models across similar settings in other developing countries.
Abstractor: As Provided
Entry Date: 2023
Accession Number: EJ1396202
Database: ERIC
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  Value: <anid>AN0170022530;54q01sep.23;2023Aug22.06:13;v2.2.500</anid> <title id="AN0170022530-1">Feasibility and Acceptability of a Synchronous Online Parent-Mediated Early Intervention for Children with Autism in a Low Resource Setting During COVID-19 Pandemic </title> <p>Very few studies exist on tele-health models of parent-mediated interventions delivered in low resource developing countries. The global COVID-19 pandemic catalysed a pilot of an online delivery of an evidence-based parent-mediated intervention (Project ImPACT) for children with Autism Spectrum Disorder in Mumbai, India. Context and culture-specific adaptations were made in program structure and a mixed-methods approach was adopted to evaluate acceptability, feasibility and preliminary efficacy of this model. Quantitative results (n = 12) showed excellent completion rates, with significant improvement in parent fidelity to intervention and child social-communication skills. Analysis of qualitative data from focus groups with parents on completion revealed that parents found the online mode convenient and acceptable, found the synchronous model of sessions especially beneficial and perceived improvements in their own parenting skills and children's developmental profiles. Though piloted in pandemic times, the results from the study have implications for future service delivery models across similar settings in other developing countries.</p> <p>Keywords: India; LMIC; parent-mediated; project impact online; telehealth</p> <hd id="AN0170022530-2">Introduction</hd> <p>The global COVID-19 pandemic that struck different parts of the world in the early part of 2020 has exacerbated existing disparities in services for children with Autism Spectrum Disorder (ASD) (Ameis, Lai, Mulsant, & Szatmari, [<reflink idref="bib3" id="ref1">3</reflink>]) with existing therapies either being discontinued completely or shifted online where feasible (Amaral & De Vries, [<reflink idref="bib2" id="ref2">2</reflink>]). These disruptions and the pre-existing digital divide (Howard & Mazaheri, [<reflink idref="bib16" id="ref3">16</reflink>]) have, in all likelihood, only increased the huge treatment-gap that already prevailed in resource-poor Low-and Middle-Income countries (LMICS) (Patel, Kieling, Maulik, & Divan, [<reflink idref="bib36" id="ref4">36</reflink>]). Even before the crippling effects of the pandemic, children and families in these regions regularly encountered barriers in accessing early diagnosis and intervention services due to a shortage of trained professionals (Uwaezuoke, [<reflink idref="bib48" id="ref5">48</reflink>]), prohibitive costs of intervention services (Juneja et al., [<reflink idref="bib23" id="ref6">23</reflink>]), conglomeration in the urban areas (Dababnah, Ghosh, Campion, Hussein, & Downton, [<reflink idref="bib12" id="ref7">12</reflink>]) and limited awareness and stigma associated with disability (Barua, Kaushik, & Gulati, [<reflink idref="bib6" id="ref8">6</reflink>]; Tilahun et al., [<reflink idref="bib47" id="ref9">47</reflink>]).</p> <p>Training parents to implement an intervention with their child is recognised as a critical component of effective autism intervention (Maglione, Gans, Das, Timbie, & Kasari, [<reflink idref="bib30" id="ref10">30</reflink>]; National Research Council, [<reflink idref="bib9" id="ref11">9</reflink>]) and as a potential means to bridge the service-gap in low resource areas. Culturally adapted parent-mediated interventions (PMIs) have found to be effective in alleviating ASD symptoms in LMIC's like Bangladesh (Blake et al., [<reflink idref="bib7" id="ref12">7</reflink>]), China (Liu, Hsieh, & Chen, [<reflink idref="bib29" id="ref13">29</reflink>]) and Ethiopia (Tekola et al., [<reflink idref="bib46" id="ref14">46</reflink>]). In India, studies on centre-based models of parent-mediated intervention (PMI) (Juneja et al., [<reflink idref="bib23" id="ref15">23</reflink>]; Nair et al., [<reflink idref="bib34" id="ref16">34</reflink>]) found that a low-intensity home-based intervention delivered by mothers decreased ASD severity and increased social and language skills, while a culturally-adapted version of Project ImPACT when piloted by trained therapists in India was found acceptable by parent participants, with improvement noted in child social-communication skills and decrease in parental stress (Sengupta, Mahadik, & Kapoor, [<reflink idref="bib42" id="ref17">42</reflink>]). In a randomised control trial of the parent-mediated intervention for autism spectrum disorder in south Asia (PASS) conducted in both Pakistan and India (Rahman et al., [<reflink idref="bib37" id="ref18">37</reflink>]), parent coaching in home-settings by trained workers using video-feedback led to improvement in spontaneous child communication with the parent.</p> <p>The global COVID-19 pandemic has forced many of us to rethink traditional service delivery models, including PMIs. The need for social distancing and strict lockdown rendered both centre-based and home interventions facilitated by community workers unviable. This situation mandated the need to consider telehealth, involving the use of telecommunication and virtual technology (World Health Organisation [WHO], [<reflink idref="bib51" id="ref19">51</reflink>]) as an alternative that could potentially address these barriers.</p> <p>Literature from developed countries during pre-COVID-19 times suggests that telehealth programs make it possible to sustain highly standardised instruction and maintain the fidelity of program implementation, while also supporting interactive and individualised learning (Baggett et al., [<reflink idref="bib4" id="ref20">4</reflink>]; Hollon et al., [<reflink idref="bib15" id="ref21">15</reflink>]). Several studies have demonstrated that parents of children with ASD find such training programmes feasible, useable, acceptable, and effective in increasing knowledge about evidence-based intervention procedures (Howroyd & Peeters, [<reflink idref="bib17" id="ref22">17</reflink>]; Jang et al., [<reflink idref="bib22" id="ref23">22</reflink>]). Despite telehealth and telemedicine's promising role in increasing access to quality health care, its adoption in developing countries in pre-COVID-19 times was fraught with multiple barriers. Bali, Gupta, Khan, and Pakhare ([<reflink idref="bib5" id="ref24">5</reflink>]) evaluated the government-supported implementation of speciality telemedicine services in the Indian state of Madhya Pradesh. Their overall findings were discouraging- poor connectivity, inadequately maintained hardware, and disinterested providers marred successful implementation. Challenges to adoption of e-health in other developing countries like Iraq and Bangladesh included high need for support from management, lack of infrastructure (Musa-Jaber, Abd Ghani, & Suryana Herman, [<reflink idref="bib33" id="ref25">33</reflink>]), high maintenance and expense of technological tools and devices, and limited knowledge about how to use technology and electricity failures (Maulik & Darmstadt, [<reflink idref="bib32" id="ref26">32</reflink>]).</p> <p>India has been no exception to the pandemic's debilitating effects, with a strict lockdown imposed in March 2020. The COVID-19 crises situation provided us the impetus to pilot an online version of Project ImPACT -an evidence-based, parent-mediated naturalistic-developmental behavioural intervention (NDBI) model (Ingersoll & Dvortcsak, [<reflink idref="bib20" id="ref27">20</reflink>]) that had been earlier successfully adapted for use in an Indian context in the form of a 6-week centre-based model termed UPPA (Ummeed Parent Training Programme) (Sengupta et al., [<reflink idref="bib42" id="ref28">42</reflink>]). While Project ImPACT has been delivered via telehealth in the U.S.A. (Ingersoll & Berger, [<reflink idref="bib19" id="ref29">19</reflink>]; Ingersoll, Shannon, Berger, Pickard, & Holtz, [<reflink idref="bib21" id="ref30">21</reflink>]), at the time of initiation of this study, we did not find any relevant literature that documented parent-mediated NDBI models delivered successfully via telehealth in our region. For successful adoption, implementation, and sustainability of innovations within community settings, it is imperative to gauge how the initial adopters perceive the innovative programme (Rogers, [<reflink idref="bib38" id="ref31">38</reflink>]). The purpose of the pilot of online Project ImPACT was to evaluate how the immediate beneficiaries or parents perceive this model's acceptability, appropriateness and feasibility in our context, so as to inform subsequent phases of implementation of the programme.</p> <p>Therefore, the current study aimed to explore:</p> <p>Parents acceptability of Project ImPACT in a LMIC setting when delivered online as a synchronous, group model</p> <p>Feasibility of parents learning and implementing an intervention when delivered online</p> <p>Perceptions of parents about benefits and challenges of the online model</p> <hd id="AN0170022530-3">Methods</hd> <p>The current study utilised a quasi-experimental pre-post study design with a mixed-methods approach to examine (Chinman, Imm, & Wandersman, [<reflink idref="bib8" id="ref32">8</reflink>]; Wandersman et al., [<reflink idref="bib50" id="ref33">50</reflink>]) the perceived fit of online Project ImPACT within our context. A concurrent quantitative-qualitative design (Creswell, Plano Clark, Gutmann, & Hanson, [<reflink idref="bib11" id="ref34">11</reflink>]) was considered appropriate- involving the concurrent but separate collection and analysis of quantitative and qualitative data to examine parent participation and adoption of strategies and enhance understanding from culture and context-specific lens. The study was approved by the institutional review Board of SRCC-NH Children's hospital.</p> <p>The intervention: Project ImPACT (Ingersoll & Dvortcsak, [<reflink idref="bib20" id="ref35">20</reflink>]), an evidence-based NDBI has been previously successfully adapted for use in an Indian context as a 6- week centre-based model (Sengupta et al., [<reflink idref="bib42" id="ref36">42</reflink>]), termed UPPA (Ummeed Parent Training Programme). The programme aims to train parents to promote social communication, play, and language acquisition for their children with ASD between the ages 1–6, using a mix of six group sessions with lectures, live-modelling, and video demonstrations and six individualised parent-coaching sessions. Based on a review of extant literature and clinical experiences of providing online services during the COVID-19 lockdown period, the trainers incorporated the following changes in the delivery model to promote this programme's success on an online platform. See Figure 1.</p> <p>PHOTO (COLOR): Figure 1. Program content structure.</p> <p>i) We designed the online model to be delivered in a <emph>synchronous</emph> format. A systematic review of PMI training delivered remotely for children with ASD (Parsons et al., [<reflink idref="bib35" id="ref37">35</reflink>]) revealed that most interventions utilised <emph>asynchronous</emph> models that relied on self-guided websites which parents could access at their own convenience. However, previous studies on Project ImPACT delivered online (Ingersoll & Berger, [<reflink idref="bib19" id="ref38">19</reflink>]; Ingersoll et al., [<reflink idref="bib21" id="ref39">21</reflink>]), that compared an asynchronous self-directed web-based intervention delivered with or without therapist assistance demonstrated greater gains in parent fidelity, and child language and social skills in the therapist-assisted groups, suggesting that the addition of an interactive remote coaching component may be a critical element of successful telehealth parent training programmes. An additional consideration was that delivering interventions in groups can reduce the stigma associated with conditions like ASD, which is a significant cultural barrier to seeking services in LMICs (Tekola et al., [<reflink idref="bib46" id="ref40">46</reflink>]). These findings influenced our decision to implement a <emph>synchronous model</emph> for both group and individualised coaching sessions that would bring trainers and parents together simultaneously in real time. We designed activities to enable mutual discussion and interactive learning opportunities, with the objective of providing virtual, yet interactive learning experiences that would closely simulate a face-to-face learning environment (Rourke, Anderson, Garrison, & Archer, [<reflink idref="bib39" id="ref41">39</reflink>]; Shi & Morrow, [<reflink idref="bib43" id="ref42">43</reflink>]).</p> <p>ii) We added an <emph>orientation session</emph> to familiarise parents with the programme's different technological aspects at the onset and modified teaching materials to make them more suited to an online model by simplifying presentation slide decks, the intention being to provide a supportive and facilitatory experience to the participants (Venkatesh, Morris, Davis, & Davis, [<reflink idref="bib49" id="ref43">49</reflink>]).</p> <p>iii) We conducted <emph>more frequent, shorter individualised coaching sessions</emph> via video-conferencing every week for parents to receive live coaching with a trained therapist as they practiced strategies, and to problem-solve for each family's unique concerns while being cognisant of the multiple demands on parents' time during the lockdown (WHO, [<reflink idref="bib52" id="ref44">52</reflink>]). Families informed us of their choice of online mode (Zoom, Whatsapp video calls or phone calls to debrief on previously shared video-recordings) to connect with the therapist, and we mutually agreed upon a plan for alternative ways to connect in the case of connectivity failures with preferred mode.</p> <hd id="AN0170022530-4">Participants</hd> <p>The study's selection criteria were parents of children aged between 1–6 years with a clinical diagnosis of ASD from a developmental pediatrician/child-psychiatrist/child-psychologist, whose primary concerns pertained to social-communication, all of whom had access to the internet on at least one Smart device and fluent in either English or Hindi. Recruitment was done through brochures with details of the programme shared on social media, and families who met inclusion criteria were invited to participate in the intervention programme on a first-come, first-served basis. The parents of 12 children (M:F = 2:1, average age = 47.5 months) who elected to participate in the intervention and identified themselves as primary caregivers (all mothers, average age 33.8 years, married and staying with partner, with minimum bachelor's level of education) were enrolled in the study. All participants gave written informed consent for participation in the study, including video-recording of sessions. There were no incentives for participating in the study.</p> <hd id="AN0170022530-5">Quantitative Measures</hd> <p>The outcomes included parental acceptability (parent attendance records and satisfaction survey), feasibility (parental fidelity and adherence of strategies), and child outcomes on social communication skills.</p> <p>Parent <emph>Attendance Records</emph> were maintained for group and individual sessions. All parents anonymously completed a 15-item <emph>Satisfaction Survey</emph> on completion of the intervention, using a 5-point Likert scale. The <emph>Parents' Fidelity of Implementation</emph> (Ingersoll & Dvortcsak, [<reflink idref="bib20" id="ref45">20</reflink>]) tool that had been validated earlier (Sengupta et al., [<reflink idref="bib42" id="ref46">42</reflink>]) in our context was used for this study. Parents submitted 10-minute video clips of their interactions with their children before the first and after the last coaching sessions, which were reviewed by trained coders blinded to the clips' timing to prevent bias. They were then rated on the use of strategies that formed part of the five core domains (Focus on Child, Adjust Communication, Create Opportunities, Teach New skills and Shape the Interaction) that were taught within the programme. Parents self-reported on frequency and duration of practice (adapted from Kasari et al., [<reflink idref="bib25" id="ref47">25</reflink>]) every week at home at midway and completing the intervention.</p> <p>The <emph>Social Communication Checklist</emph> (Ingersoll & Dvortcsak, [<reflink idref="bib20" id="ref48">20</reflink>]), a 47-item tool, was used to measure individual children's social-communication abilities in five areas: Social Engagement, Language (Expressive -form and function, and Receptive), Understanding and Following Directions, Social Imitation and Play. Independent raters completed the SCC at the beginning and on completion of the intervention and inter-rater reliability amongst the raters was 0.85.</p> <p>Changes in outcome variables were examined using Wilcoxon- signed rank test for paired samples, using SPSS version 25.0 (2017), significance level was set at p < 0.05.</p> <hd id="AN0170022530-6">Qualitative Interviews and Data Analysis</hd> <p>Focus group discussions (75 to 105 min, with an average interview time of 90 min) were conducted with the parents at the beginning and on completion of the programme by independent research assistants trained in qualitative interviewing methods. Parents were randomly assigned to one of three groups, using the break-out room function of Zoom. A semi-structured questionnaire was used to ask their opinions about their motivation to participate in the parent training programme, overall perception of the programme and the online delivery model. Parental responses were transcribed verbatim; and data analysis was conducted following open and axial-coding procedures (Creswell, Hanson, Clark Plano, & Morales, [<reflink idref="bib10" id="ref49">10</reflink>]). 2 reviewers (KS and SM) reviewed the qualitative data, and line-by-line codes were developed during the process. Following principles of thematic content analysis, codes were then collated into sub-themes and key themes, which were further coalesced into categories and relationships amongst categories were identified as a final step.</p> <hd id="AN0170022530-7">Results</hd> <p></p> <hd id="AN0170022530-8">Quantitative Results</hd> <p>All twelve mothers who participated in the study attended all group and individualised sessions. Eight of the fathers also attended between seventy-five percent to all sessions. Results from the satisfaction survey showed that mothers (n = 12) found the coaching understandable, helpful and sensitive to their culture, needs and strengths (M = 4.6), consistently reported a better understanding of how to use the strategies at home (M = 4.6) and perceived improvement in their child's social communication skills (M = 4.4).</p> <p>Table 1Most parents self-reported practicing strategies during everyday activities five times during the week, and average duration of practice as 15–30 minutes. Parent fidelity scores improved significantly from baseline to completion of the programme (z = −2.74, p < 0.05, ES = 0.56). Child social communication scores improved significantly across areas of social engagement, expressive language, understanding directions and social imitation, with mean SCC scores at endpoint significantly higher than baseline (z = −3.06, p < 0.05, ES = 0.62). (Please refer Table 2 for Parent Fidelity to Intervention and Child Social-Communication scores). Please refer to Table 1 for Characteristics of primary caregiver- child dyads.</p> <p>Table 1. Characteristics of primary caregiver- child dyads.</p> <p> <ephtml> <table><thead><tr><td>Primary caregiver/Mother</td><td>Maternal age</td><td>Marital status</td><td>Maternal education level</td><td>Child gender</td><td>Child age in months</td><td>Other parent/caregiver attended</td><td>Family income in INR*</td><td>Place of residence**</td><td>Hours Of Therapy/Wk other than PMI</td></tr></thead><tbody><tr><td>P1</td><td>42</td><td>Married</td><td>Master's</td><td>M</td><td>35</td><td>Yes</td><td>> 1 Lakh</td><td>Mumbai</td><td>Nil</td></tr><tr><td>P2</td><td>34</td><td>Married</td><td>Master's</td><td>M</td><td>43</td><td>Yes</td><td>50 K- 1 Lakh</td><td>Kolkata</td><td>Nil</td></tr><tr><td>P3</td><td>38</td><td>Married</td><td>PhD</td><td>M</td><td>47</td><td>No</td><td>50 K- 1 Lakh</td><td>Guwahati</td><td>1</td></tr><tr><td>P4</td><td>35</td><td>Married</td><td>Master's</td><td>F</td><td>68</td><td>No</td><td>> 1 Lakh</td><td>Suburban Mumbai</td><td>4</td></tr><tr><td>P5</td><td>35</td><td>Married</td><td>Master's</td><td>M</td><td>29</td><td>No</td><td>30 K-50 K</td><td>Suburban Mumbai</td><td>Nil</td></tr><tr><td>P6</td><td>34</td><td>Married</td><td>Bachelor's</td><td>M</td><td>48</td><td>Yes</td><td>15 K-30 K</td><td>Suburban Mumbai</td><td>2</td></tr><tr><td>P7</td><td>35</td><td>Married</td><td>Master's</td><td>M</td><td>35</td><td>Yes</td><td>30 K-50 K</td><td>Suburban Mumbai</td><td>5</td></tr><tr><td>P8</td><td>35</td><td>Married</td><td>Master's</td><td>F</td><td>50</td><td>Yes</td><td>50 K- 1 Lakh</td><td>Suburban Mumbai</td><td>1</td></tr><tr><td>P9</td><td>29</td><td>Married</td><td>Bachelor's in Nursing</td><td>F</td><td>38</td><td>Yes</td><td>50 K- 1 Lakh</td><td>Suburban Mumbai</td><td>Nil</td></tr><tr><td>P10</td><td>32</td><td>Married</td><td>Bachelor's</td><td>F</td><td>68</td><td>No</td><td>30 K-50 K</td><td>Ratnagiri</td><td>4</td></tr><tr><td>P11</td><td>39</td><td>Married</td><td>Bachelor's</td><td>M</td><td>55</td><td>Yes</td><td>15 K-30 K</td><td>Suburban Mumbai</td><td>2</td></tr><tr><td>P12</td><td>33</td><td>Married</td><td>Master's</td><td>M</td><td>54</td><td>Yes</td><td>30 K-50 K</td><td>Suburban Mumbai</td><td>Nil</td></tr></tbody></table> </ephtml> </p> <p>1 **Suburban Mumbai included suburbs at a distance of 35–55 kms (23–35 miles).</p> <p>Table 2. Parent fidelity to intervention and child social-communication scores.</p> <p> <ephtml> <table><thead><tr><td>Sub-Domains</td><td><italic>z</italic> value</td><td>P value</td><td>Effect size</td></tr></thead><tbody><tr><td><italic>Parent Fidelity to Intervention</italic> Parent focuses on child</td><td>−2.74</td><td>0.006</td><td>0.56</td></tr><tr><td>Parent adjusts own communication</td><td>−2.71</td><td>0.007</td><td>0.55</td></tr><tr><td>Parent creates opportunities</td><td>−2.43</td><td>0.015</td><td>0.50</td></tr><tr><td>Parent teaches new skills</td><td>−0.33</td><td>0.739*</td><td>0.07</td></tr><tr><td>Parent shapes interaction</td><td>−2.88</td><td>0.004</td><td>0.59</td></tr><tr><td>Parent Fidelity Total</td><td>−2.74</td><td>0.006</td><td>0.56</td></tr><tr><td><italic>Child Social-Communication (SCC)</italic></td><td /><td /><td /></tr><tr><td>Social Engagement</td><td>−2.98</td><td>0.003</td><td>0.61</td></tr><tr><td>Expressive Language Form</td><td>−3.07</td><td>0.002</td><td>0.63</td></tr><tr><td>Expressive Language Function</td><td>−3.07</td><td>0.002</td><td>0.63</td></tr><tr><td>Understanding and Following Directions</td><td>−3.07</td><td>0.002</td><td>0.63</td></tr><tr><td>Social Imitation</td><td>−2.94</td><td>0.003</td><td>0.60</td></tr><tr><td>Play</td><td>−2.81</td><td>0.005</td><td>0.57</td></tr><tr><td>SCC total</td><td>−3.06</td><td>0.002</td><td>0.62</td></tr></tbody></table> </ephtml> </p> <p>2 *p > 0.05</p> <hd id="AN0170022530-9">Qualitative Results</hd> <p>In keeping with the objectives of the study, the themes presented below capture parent perspectives on acceptability of the online mode, advantages of the synchronous version that contributed to feasibility, perceived benefits of the intervention, challenges and recommendations.</p> <hd id="AN0170022530-10">Acceptability of the Online Mode: Initial Scepticism About Online Mode</hd> <p>At the initiation of the programme, parents described their reservations about undergoing training using an online platform. One of the mothers commented,</p> <p>This is an online programme. And because of that I had panicked because this is the first time for them and for us also.</p> <p>P3 spoke about how,</p> <p>While working from home, I think many of us have faced, you know, the online meetings and all, there are always challenges, for these kinds of things. So, I was a little skeptical.</p> <hd id="AN0170022530-11">Motivation to Participate</hd> <p>Multiple reasons motivated parents to forego their hesitation and participate in the online programme. A primary reason was parents' sense of helplessness in being unable to understand or relate to their child with autism, which was exacerbated due to the lockdown and its resultant breakdown of therapy services and forced parents to consider online services.</p> <p>After lockdown, the therapy center shutdown and the treatment could not be continued. We were not sure what kind of strategies we should use, and we were not sure if whatever we were doing was correct.</p> <p>However, it became apparent that difficulties encountered even before the lockdown encouraged some parents to opt for a parent-mediated programme delivered online. Two mothers, who used to commute 2–4 hours daily before lockdown to reach their therapy centres candidly reported -</p> <p>I was fed up of traveling. Like go to school, and then from school, again go to therapy. So, I was very much fed up and because of that an online programme sounded good.</p> <hd id="AN0170022530-12">Advantages of the Online Mode</hd> <p>Parents enthusiastically articulated multiple ways in which the online mode proved beneficial. Not needing to take large chunks of time off from work was especially helpful.</p> <p>Because it is online, I am finding it comfortable because I can join from anywhere. I could join the group sessions while I was at work. For me that is better.</p> <p>Mothers who had additional caregiving responsibilities for other children and elderly family members reported that the online model eliminated the additional stress of needing to plan for emergencies. P11 said,</p> <p>I also have an elder daughter; my husband does not have time and I can't leave her at anyone else's place. I would travel for the offline sessions, but my mind would always be there on my elder daughter.</p> <hd id="AN0170022530-13">Programme Structure and Support with Logistics</hd> <p>Most parents described how they found the structure of the intervention programme suited their requirements -the breaks between group sessions were well-spaced and permitted time for reflection and practice. Additionally, parents referred to the 'small things' that added to their overall experience.</p> <p>If somebody is typing on chat, they responded immediately. Zoom meeting details have been shared in advance, then the individual counselor reminds you, day before, again on the same day that it is going to start, these are small-small things, but I am pretty sure, these are very helpful.</p> <hd id="AN0170022530-14">Advantages of the Synchronous Model: Therapist Guidance</hd> <p>All parents strongly endorsed the value of having a therapist observe their children, their behaviours, and preferences in their home settings. P 5, a mother of a 3.5-year-old described,</p> <p>The therapist gave us ideas. from the toys we have at home. if he doesn't like one toy, then we should give him the next toy so as to bring his attention back. These are all practical things, and all this can't happen only with the lectures. It can happen only with help from the therapist.</p> <p>Most parents found immense value in having the therapists observe their interactions with their children in real-time, and being coached and reinforced, contributing to their sense of confidence.</p> <p>... if I am doing a small thing for my child, I get a lot of appreciation from the therapist for that. So, the parents and the children, they both feel good that they are doing something good.</p> <hd id="AN0170022530-15">Being Part of a Peer-Group</hd> <p>The experience of being part of a group of parents who shared similar concerns and experiences bolstered many of the parents. P1 spoke about when</p> <p>I see other parents are there, who are doing the same thing, taking the same journey with me, not physically, but I can see them right, in a group session, that also helps me as a parent.</p> <p>P7 described how common concerns were not just reassuring but practically useful.</p> <p>One day, there was a group discussion on play and everyone had a different view on the same play. I got to hear everyone's view and ... some of the points which other participants raised, I never had in my mind.</p> <hd id="AN0170022530-16">Perceived Benefits of the Intervention</hd> <p></p> <hd id="AN0170022530-17">Enhanced Skills and Knowledge in Parents</hd> <p>Parents unanimously reported that they learned novel ways of interacting with their children during the sessions. They pointed out differences in their parenting skills and practices after participating in the intervention and how it has impacted their relationship with their child. P7 described,</p> <p>We were not following the kid's lead. We wanted him to play with some specific toy. So, that was something which we felt we were doing wrong.</p> <p>P8, the mother of a 4.6-year-old boy shared,</p> <p>Our bonding has now improved a lot. Earlier I would shout on him a lot and all. I was not able to understand how I should work with him.</p> <hd id="AN0170022530-18">Improved Parental Confidence</hd> <p>Many parents perceived an enhanced sense of confidence in their abilities to understand and support their children's skills, across situations and settings. P7 emphasised,</p> <p>Now the helplessness has reduced to a great extent. Even now, it's there, I won't say it's not there. But whenever I feel helpless, I again go back to the techniques to see what I can do.</p> <hd id="AN0170022530-19">Gains in Child Skills</hd> <p>All parents described an improvement in their children's skills across varied domains, including their expressive language, engagement, imitation, reciprocity, and play skills.</p> <p>And he knew the words .... but he wouldn't speak. But now he talks so well. he can say the prayers. So, in the last 2 to 2.5 months I have seen a lot of progress in him."</p> <p>"Nowadays he plays a lot, and he responds well. And he started speaking words. I mean not very clear, but he has started imitating ...</p> <hd id="AN0170022530-20">Challenges and Recommendations</hd> <p></p> <hd id="AN0170022530-21">Lack of Face-to-Face Guidance</hd> <p>Despite all the advantages and benefits parents discovered in the online mode, many parents seemed to miss face-to-face sessions and the real-time connection with a therapist they enable. P9 articulated,</p> <p>Because these children are autistic children, the more personally the doctor gives therapy sessions, the better it is. For example, the body to body touch (physical prompt) is also very important .... to make them understand what they should do.</p> <p>P8 was candid about her difficulties with being able to implement the strategies that were taught,</p> <p>Sometimes I get confused and I am not able to understand what the therapist is trying to say. A lot of times I get confused. Then I feel it would be better to see her doing it.</p> <hd id="AN0170022530-22">Difficulties with Setting and Connectivity</hd> <p>One of the parents found that attending from home was associated with distractions like tending to children. Two other parents complained about connectivity issues becoming a challenge.</p> <p>I had a lot of problems with the network. And the videos that were played in the sessions, we were not able to see or even hear those that properly. Whenever the therapist would ask us, like what did you hear the child say.we were not able to respond because of that.</p> <hd id="AN0170022530-23">Limited Opportunities for Generalisation</hd> <p>Two parents brought up how non-existent opportunities to step out during the lockdown period prevented them from observing if the improvement in their children's skills were generalised to other settings.</p> <hd id="AN0170022530-24">Importance of a Blended Model</hd> <p>A majority of the parents, especially those from Mumbai and suburbs, concurred that a blended model that included group sessions conducted online and individual sessions with a familiar therapist conducted face-to-face would be preferable to a completely online model.</p> <p>I feel. when the Covid situation ends, there should be some sessions which should be offline and some sessions should be online. So, the travel time should reduce for the child and the parent. But at the same time, there should be connection between the therapist, between the family and the child, I feel more human connection is needed.</p> <hd id="AN0170022530-25">Discussion</hd> <p>Desperate times call for innovative measures. The unprecedented country-wide lockdown in India enforced due to the COVID-19 crises, and its resultant disruption of traditional, centre-based intervention services catalysed a shift to online delivery of a culturally-adapted, evidence-based parent-mediated intervention (PMI) for ASD. Our study is one of the first to look at the feasibility, acceptability, and initial effectiveness of Project ImPACT delivered online in an LMIC setting.</p> <p>Scepticism and reservations marked parent participation at the intervention's onset, which did not come as a surprise. These were still the early months of the pandemic crises, and the pre-pandemic years had not witnessed a successful adoption of telehealth in our settings. Parental concerns ranged from questions about the actual effectivity of interventions delivered online to worries about poor connectivity issues. Similar reluctance to adopt telehealth as a viable option has emerged from other studies in developing countries and has often been attributed to cultural differences in how treatment is perceived (Salehahmadi & Hajialiasghari, [<reflink idref="bib40" id="ref50">40</reflink>]).</p> <p>Our study once again highlighted the significant need for comprehensive and accessible autism intervention services in our region that motivated parents to participate and complete the intervention. Parent narratives revealed how services they were availing of before the pandemic crises involved significant travel and logistical planning and still left them feeling ill-equipped to deal with their children's specific challenges. The opportunity to participate in an intervention that addressed key parental concerns from the convenience of their homes without the added burden of arranging for child-care or care for extended family members made the online model acceptable to all the participating families. Additionally, the online mode enabled families from geographically remote locations in other states of India to join, thereby making a PMI available where previously there was none. We feel that going ahead, service providers in LMICs can be optimistic about this model's potential to address many of the challenges that have hindered early access to autism specific, evidence-based intervention for families. Our optimism is shared by researchers in other low resource settings like South Africa, where they noticed a surprising readiness to adapt to online models (Amaral & De Vries, [<reflink idref="bib2" id="ref51">2</reflink>]) during the COVID-19 period.</p> <p>Beyond acceptability, we were concerned whether parents would be able to learn and deliver the intervention. We found that parent participants could implement the strategies at home, and parental fidelity scores improved significantly from baseline to completion of the programme, with the largest effect sizes noted for the components of adjusting their communication to meet the child's level and shaping the interaction. Most parents noticed changes in ways they interacted, from being directive to more child-led; from being 'angry and upset' to understanding their child's behaviours; and attributed them to the ongoing interactions and coaching by their therapists during the individualised sessions. Varied aspects were perceived as useful- from being guided to observe their child's level of play and preferences, to tailor strategies to their settings, and modify their interactions with their children. This benefit of synchronous feedback and therapist guidance on improving parent satisfaction, competency and engagement that emerged as a qualitative theme in our study have been documented in earlier studies on telehealth interventions as well (Ingersoll & Berger, [<reflink idref="bib19" id="ref52">19</reflink>]; Snodgrass et al., [<reflink idref="bib44" id="ref53">44</reflink>]). Other factors that emerged as facilitatory included the logistical support provided by the therapists- including reminders to log in and technical support during the zoom sessions, which although 'small' acquire importance in our settings where e-health or computer literacy is uneven (Kazi et al., [<reflink idref="bib26" id="ref54">26</reflink>]; Scott Kruse et al., [<reflink idref="bib41" id="ref55">41</reflink>]).</p> <p>We also found that the fidelity levels were lesser than what is considered as the benchmark for intervention skill mastery (Stahmer & Gist, [<reflink idref="bib45" id="ref56">45</reflink>]) and marginally lower than our centre-based model of Project ImPACT (Sengupta et al., [<reflink idref="bib42" id="ref57">42</reflink>]), delivered by therapists with comparable fidelity. Parents commented that the online mode felt inadequate at times, mostly when specific strategies or concepts were hard to grasp online, and observing a therapist in real-time would have been preferable. In their study on adapting a naturalistic intervention in India and Pakistan, Divan et al. ([<reflink idref="bib13" id="ref58">13</reflink>]) described parents' culturally-rooted discomfort with play-based strategies and an inclination towards a more didactic approach. We hypothesise that for NDBIs which are primarily based on more 'child-led' approaches compared to a more culturally-aligned imperative, parent-dominated interaction style (Krupa, Boominathan, Sebastian, & Ramanan, [<reflink idref="bib28" id="ref59">28</reflink>]), and live modelling by therapists may confer an advantage in building parent-fidelity. Interestingly, one of the key recommendations that emerged from the parents was to consider a blended model, with online group sessions and centre-based individualised sessions.</p> <p>Overall, parents were unanimous in how they perceived a greater sense of confidence in their skills and abilities. They perceived improvements in their children's social-communication skills, which were also borne out by the significant changes in children's social communication scores across expressive language form and function, understanding and following directions and social imitation on completion of the intervention. Additionally, being part of a peer-group emerged as a element that supplemented the parents' experience. Opportunities to hear similar experiences from other parents and problem-solve created a sense of a 'support group' and lessened feelings of isolation. The psychosocial burden on caregivers of children with ASD in LMICs and the need to explore interventions that support positive coping strategies and reduce parental stress have been extensively documented (Hahler & Elsabbagh, [<reflink idref="bib14" id="ref60">14</reflink>]; Masulani-Mwale, Kauye, Gladstone, Mathanga, & Federici, [<reflink idref="bib31" id="ref61">31</reflink>]). The inclusion of synchronous group sessions in our model appeared to serve this purpose well, and has been supported by literature that suggests that e-learners perceive synchronous communication akin to 'talking' and find it more acceptable for exchanging social support (Hrastinski, [<reflink idref="bib18" id="ref62">18</reflink>]).</p> <p>As anticipated, the most commonly encountered challenge was internet connectivity- and even more pertinent as all sessions were designed to be synchronous. Therapists conducting the programme had to be flexible in exploring multiple ways to address this challenge- reviewing pre-recorded home videos and providing feedback over phone, sharing recordings of group sessions on secure platforms and incorporating 'revision' sessions for those who missed. Poor internet connectivity is one of the most common barriers in implementation and adoption of tele-health (Scott Kruse et al., [<reflink idref="bib41" id="ref63">41</reflink>]) and one can hope that improved technology in days to come will address this issue. Another challenge that emerged specific to the pandemic times and the resultant social isolation was parents' inability to determine whether the improvement in skills in their children were generalisable to settings and people other than home and immediate family members.</p> <hd id="AN0170022530-26">Limitations</hd> <p>Our study has multiple limitations. Despite the broad base of internet users, the country's internet penetration rate stood at around 50% in 2020 and the majority of internet users are between 2- and 29 years of age, male and living in urban India (Kaka et al., [<reflink idref="bib24" id="ref64">24</reflink>]; Keelery, [<reflink idref="bib27" id="ref65">27</reflink>]), creating a possible 'digital divide' in access to such interventions. The small sample size makes it hard to comment on generalisability across settings, especially feasibility in semi-urban and rural areas, where mothers who are primary caregivers may not have access to cell-phones (Alvi, Gupta, Meinzen-Dick, & Ringler, [<reflink idref="bib1" id="ref66">1</reflink>]; Howard & Mazaheri, [<reflink idref="bib16" id="ref67">16</reflink>]) or lack the technological skills to participate in interventions delivered online. Our limited sample also made it hard to explore any correlations between independent variables like maternal age, level of education, family income, child's baseline level of functioning with our outcome variables.</p> <p>As this intervention was piloted during pandemic times, most of the parents had very limited options for therapy that they could explore and this may have substantially increased their motivation to participate and complete the intervention. Much work remains to be done to disseminate findings of studies such as this one so as to publicise the advantages of online or tele-therapy (Bali et al., [<reflink idref="bib5" id="ref68">5</reflink>]), and ensure long-term adoption and sustained utilisation even after the Covid crises has ended. This study also did not explore the perspective of the intervention providers. We do not have information about the challenges of providing a completely synchronous model of intervention which required a high degree of online time and flexibility. Further research is required to explore costs of delivery of this model of intervention and scaling it as financial viability is an important determiner of long-term adoption and sustainability.</p> <hd id="AN0170022530-27">Conclusion</hd> <p>Our study demonstrates that parent-mediated interventions like Project ImPACT delivered online have significant potential to increase access to evidence-based care to children with autism in low resource settings, by bypassing barriers like prolonged travel times, shortage of trained therapists locally and need for logistical issues like arranging child and elder care. When delivered synchronously, it enabled parents to hone their skills of observing and understanding their children and their communication and behaviours, with real-time guidance from trained professionals and created a much-needed safe space where they could lean on and in turn support other caregivers in similar contexts. By enabling parents to take charge of their children's development and becoming partners in a collaborative process of care, low resourced communities can address existing disparities and bridge the treatment gap in childhood ASD, even after the pandemic abates.</p> <hd id="AN0170022530-28">Acknowledgments</hd> <p>The authors would like to thank Chanchal Patil and Disha Zaveri for their help with conducting the focus groups and special thanks to the families and children for their participation and support during the study.</p> <hd id="AN0170022530-29">Disclosure of Potential Conflicts of Interest</hd> <p>The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.</p> <ref id="AN0170022530-30"> <title> References </title> <blist> <bibl id="bib1" idref="ref66" type="bt">1</bibl> <bibtext> Alvi, M., Gupta, S., Meinzen-Dick, R., & Ringler, C. (2020, July 14). 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Header DbId: eric
DbLabel: ERIC
An: EJ1396202
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PubType: Academic Journal
PubTypeId: academicJournal
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Items – Name: Title
  Label: Title
  Group: Ti
  Data: Feasibility and Acceptability of a Synchronous Online Parent-Mediated Early Intervention for Children with Autism in a Low Resource Setting during COVID-19 Pandemic
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Sengupta%2C+Koyeli%22">Sengupta, Koyeli</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0002-7497-6079">0000-0002-7497-6079</externalLink>)<br /><searchLink fieldCode="AR" term="%22Javeri%2C+Aakankshi%22">Javeri, Aakankshi</searchLink><br /><searchLink fieldCode="AR" term="%22Mascarenhas%2C+Cristabelle%22">Mascarenhas, Cristabelle</searchLink><br /><searchLink fieldCode="AR" term="%22Khaparde%2C+Ojaswita%22">Khaparde, Ojaswita</searchLink><br /><searchLink fieldCode="AR" term="%22Mahadik%2C+Sanchita%22">Mahadik, Sanchita</searchLink>
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22International+Journal+of+Disability%2C+Development+and+Education%22"><i>International Journal of Disability, Development and Education</i></searchLink>. 2023 70(6):946-962.
– Name: Avail
  Label: Availability
  Group: Avail
  Data: Routledge. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 17
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2023
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22COVID-19%22">COVID-19</searchLink><br /><searchLink fieldCode="DE" term="%22Pandemics%22">Pandemics</searchLink><br /><searchLink fieldCode="DE" term="%22Synchronous+Communication%22">Synchronous Communication</searchLink><br /><searchLink fieldCode="DE" term="%22Online+Courses%22">Online Courses</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Role%22">Parent Role</searchLink><br /><searchLink fieldCode="DE" term="%22Early+Intervention%22">Early Intervention</searchLink><br /><searchLink fieldCode="DE" term="%22Students+with+Disabilities%22">Students with Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Autism+Spectrum+Disorders%22">Autism Spectrum Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Cultural+Relevance%22">Cultural Relevance</searchLink><br /><searchLink fieldCode="DE" term="%22Program+Implementation%22">Program Implementation</searchLink><br /><searchLink fieldCode="DE" term="%22Fidelity%22">Fidelity</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Attitudes%22">Parent Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Program+Effectiveness%22">Program Effectiveness</searchLink><br /><searchLink fieldCode="DE" term="%22Parents+as+Teachers%22">Parents as Teachers</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Educational+Technology%22">Educational Technology</searchLink><br /><searchLink fieldCode="DE" term="%22Young+Children%22">Young Children</searchLink><br /><searchLink fieldCode="DE" term="%22Communication+Skills%22">Communication Skills</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22India%22">India</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1080/1034912X.2021.1937957
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1034-912X<br />1465-346X
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Very few studies exist on tele-health models of parent-mediated interventions delivered in low resource developing countries. The global COVID-19 pandemic catalysed a pilot of an online delivery of an evidence-based parent-mediated intervention (Project ImPACT) for children with Autism Spectrum Disorder in Mumbai, India. Context and culture-specific adaptations were made in program structure and a mixed-methods approach was adopted to evaluate acceptability, feasibility and preliminary efficacy of this model. Quantitative results (n = 12) showed excellent completion rates, with significant improvement in parent fidelity to intervention and child social-communication skills. Analysis of qualitative data from focus groups with parents on completion revealed that parents found the online mode convenient and acceptable, found the synchronous model of sessions especially beneficial and perceived improvements in their own parenting skills and children's developmental profiles. Though piloted in pandemic times, the results from the study have implications for future service delivery models across similar settings in other developing countries.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2023
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1396202
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1396202
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1080/1034912X.2021.1937957
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 17
        StartPage: 946
    Subjects:
      – SubjectFull: COVID-19
        Type: general
      – SubjectFull: Pandemics
        Type: general
      – SubjectFull: Synchronous Communication
        Type: general
      – SubjectFull: Online Courses
        Type: general
      – SubjectFull: Parent Role
        Type: general
      – SubjectFull: Early Intervention
        Type: general
      – SubjectFull: Students with Disabilities
        Type: general
      – SubjectFull: Autism Spectrum Disorders
        Type: general
      – SubjectFull: Cultural Relevance
        Type: general
      – SubjectFull: Program Implementation
        Type: general
      – SubjectFull: Fidelity
        Type: general
      – SubjectFull: Parent Attitudes
        Type: general
      – SubjectFull: Program Effectiveness
        Type: general
      – SubjectFull: Parents as Teachers
        Type: general
      – SubjectFull: Foreign Countries
        Type: general
      – SubjectFull: Educational Technology
        Type: general
      – SubjectFull: Young Children
        Type: general
      – SubjectFull: Communication Skills
        Type: general
      – SubjectFull: India
        Type: general
    Titles:
      – TitleFull: Feasibility and Acceptability of a Synchronous Online Parent-Mediated Early Intervention for Children with Autism in a Low Resource Setting during COVID-19 Pandemic
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            NameFull: Mascarenhas, Cristabelle
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            NameFull: Khaparde, Ojaswita
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            NameFull: Mahadik, Sanchita
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            – D: 01
              M: 01
              Type: published
              Y: 2023
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            – Type: issn-print
              Value: 1034-912X
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            – TitleFull: International Journal of Disability, Development and Education
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