Evidence map›Paper›PMID 39655488›Full record

ArticleAutism : the international journal of research and practice2025

Adapting an early autism caregiver coaching intervention for telehealth delivery in low-resource settings: A South African study of the 'what' and the 'why'.

Marisa Viljoen, Noleen Seris, Nokuthula Shabalala, Minkateko Ndlovu, Petrus J de Vries, Lauren Franz

Registry-linked trialAbstract read
In one paragraph

Article in Autism : the international journal of research and practice, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05551728 (Autism Caregiver Coaching in Africa), which is not on this map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT05551728 narecruitingnot on this map

Autism Caregiver Coaching in Africa

TypeinterventionalSponsorDuke UniversityRan2023 to 2027Enrolled320ConditionsAutism or Autistic TraitsArmsESDM-informed caregiver coaching
3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Observational
  2. Detecting change in a caregiver-mediated autism intervention using the Joint Engagement Rating Inventory.The South African journal of communication disorders = Die Suid-Afrikaanse tydskrif vir Kommunikasieafwykings · 2025
    Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Marisa ViljoenDivision of Child & Adolescent Psychiatry, University of Cape Town, South Africa.ORCID 0000-0001-5062-8654
Noleen SerisDivision of Child & Adolescent Psychiatry, University of Cape Town, South Africa.
Nokuthula ShabalalaDivision of Child & Adolescent Psychiatry, University of Cape Town, South Africa.
Minkateko NdlovuDivision of Child & Adolescent Psychiatry, University of Cape Town, South Africa.ORCID 0000-0002-8163-1503
Petrus J de VriesDivision of Child & Adolescent Psychiatry, University of Cape Town, South Africa.ORCID 0000-0002-8915-1571
Lauren FranzDivision of Child & Adolescent Psychiatry, University of Cape Town, South Africa.ORCID 0000-0003-4434-7500

Funding

Autism Caregiver Coaching in AfricaR01MH127573 · NIMH · DUKE UNIVERSITY · PI Lauren Franz · 2022 to 2026
$2.9M
Pilot Study to Improve Access to Early Intervention for Autism in AfricaK01MH104370 · NIMH · DUKE UNIVERSITY · PI FRANZ, LAUREN · 2015 to 2019
$901k
Tailoring treatment targets for early autism intervention in AfricaR21MH120696 · NIMH · DUKE UNIVERSITY · PI FRANZ, LAUREN · 2019 to 2020
$362k
NIMH NIH HHS K01 MH104370NIMH NIH HHS R01 MH127573NIMH NIH HHS R21 MH120696
6 · The paper itself

Abstract

The COVID-19 pandemic required in-person interventions to be adapted for remote delivery all over the globe. In South Africa, an in-person cascaded task-sharing naturalistic developmental behavioural intervention was adapted for telehealth delivery in a low-resource context. Here we describe the adaptations made (the 'what') and reasons for adaptations (the 'why'). The Framework for Modification and Adaptations (FRAME) was used to document the 'what', and the Exploration, Preparation, Implementation, Sustainment (EPIS) framework to describe the 'why'. Systematic member-checking ensured robustness of results. The 'what' included 10 adaptations: selecting WhatsApp as delivery platform, developing images with simple text to communicate intervention concepts, modifying session structure for hybrid delivery, including a caregiver self-reflection checklist, utilizing online practitioner training, supervision, assessment and consent procedures, developing session recording procedures, distributing session materials electronically, and developing caregiver-child interaction recording and uploading protocols. The 'why' included three outer contextual factors (the digital divide, WhatsApp security/privacy policy, and COVID-19 restrictions), three inner contextual factors (characteristics of caregivers and practitioners, ethics board guidance, and school leadership and organizational characteristics) and one innovation factor (support from intervention co-developers). Adaptations were made in response to unchangeable outer contextual factors and through identification of malleable inner contextual factors.Lay abstractWe were busy with an early autism caregiver-coaching programme in South Africa, when COVID-19 stopped all in-person work. We changed the programme so it could be done using computers and/or phones. Here, we describe programme changes (which we call the 'what') and the reasons for those changes (which we call the 'why'). We used a tool called the Framework for Modification and Adaptations (FRAME) to describe the 'what', and the Exploration, Preparation, Implementation, Sustainment (EPIS) framework to describe the 'why' of our programme changes. The team members who helped make these changes checked that the changes described were correct. We made 10 changes in total: we used WhatsApp to deliver the programme, made simple pictures with words as visual tools for the programme, changed some session activities, changed a self-reflection checklist, provided all activities online, changed the way assessment and consent was done, made a session recording guide, sent things needed for sessions by email and WhatsApp, and made a caregiver-child play recording guide. The reasons for changes (the 'why') were about factors outside schools (the types of phones and data people had, WhatsApp security rules, COVID-19 rules), things inside schools/workplace (about the caregivers and nonspecialists themselves, ethics boards, things about the school itself), and support from people who developed the programme. Changes were made by working with things inside schools/workplace that could change. Identifying what could change helped focus and guide which changes were made to a programme.

Indexed as

Autistic DisorderCaregiversMentoringTelemedicineChildChild, PreschoolCOVID-19FemaleHumansMaleMobile ApplicationsSARS-CoV-2South Africaadaptationcaregiver coachingexplorationimplementationNaturalistic Developmental Behavioural Interventionpreparationsustainment (EPIS) frameworktelehealthThe Framework for Modification and Adaptations (FRAME)

Identifiers

PMID39655488
PMCPMC12038070

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.