WHO's Parent Skills Training for developmental disorders: Piloting task-shifting to non-specialists in Ethiopia

Lead Research Organisation: King's College London
Department Name: Psychology

Abstract

Developmental disorders including intellectual disability and autism are common worldwide and have a large impact on the lives of the individuals concerned and their families. Providing adequate support for children with developmental disorders is a major challenge, especially for low- and middle-income countries, where health service facilities and trained personnel are lacking. In Ethiopia this lack is particularly pronounced: there are only two specialist child psychiatrists; services for children with developmental disorders are restricted to the country's capital Addis Ababa and inaccessible to the majority (85%) of the population living in rural areas. Most children with developmental disorders in Ethiopia receive little or no formal help and have no access to interventions.

To address this gap the World Health Organization has developed a low-cost, scalable Parent Skills Training (PST) for caregivers of children with developmental disorders. The PST consists of nine weekly PST group sessions and three individual home visits, and teaches caregivers strategies to support their child's learning and to address challenging behaviours. Our research team is currently conducting a pre-pilot to test how the PST programme can best be adapted for use in the Ethiopian context. This pre-pilot is facilitated in a clinical setting by mental health specialists to allow for expert response in case any challenges emerge. However, the PST programme is ultimately designed to be delivered by non-specialists, so that the programme can be provided at a low cost to large groups of families. Before the PST can be implemented it is necessary to assess whether it is feasible to train non-specialists to successfully deliver the PST programme, and whether this non-specialist facilitated programme is acceptable to caregivers and addresses their needs. Moreover, before the impact of the PST can be fully evaluated (in a randomised controlled trial, RCT) we need to know whether the measures proposed to assess the impact of the programme are reliable and appropriate for use in the Ethiopian setting.

In this proposal funding is requested to allow for 40 caregivers of a child with a developmental disorder to take part in the programme as delivered by non-specialists. Detailed feedback will be asked from caregivers, non-specialist PST facilitators and their supervisors to assess the programme's feasibility and acceptability. The potential impact of the programme will be assessed by comparing this group of caregivers and their children with a group of 40 caregivers and children who have not yet enrolled in the programme.

Furthermore data will be collected on the PST's proposed outcome measures from 300 children (150 with developmental disorders, 150 with other problems) who attend two child mental health clinics in Addis Ababa. Based on the children's scores on these measures we will be able to determine whether the scales assess what we intend to measure (i.e. the validity of the measures) and whether the scales assess these characteristics consistently (i.e. the reliability of the measures).

This study will generate evidence on how to best adapt and implement a scalable and sustainable training programme for caregivers of children with developmental disorders in a context of high need and extremely limited provision. Implementing the programme in such a setting will not be without challenges; this study will provide crucial insights in these obstacles and how to best overcome them. The findings of this study are likely to apply to other low-income settings too, especially to other sub-Saharan African countries. Our proposed project can inform future implementation of the PST programme in these settings.

Technical Summary

Background and objectives: The World Health Organization has developed a Parent Skills Training (PST) for caregivers of children with developmental disorders (DD). The PST, consisting of 9 group sessions and 3 home visits, teaches strategies to promote communication and learning and address challenging behaviours. Our team received funding for a feasibility and acceptability pre-pilot of the PST in Ethiopia, facilitated by specialists in the clinic. The PST is ultimately designed to be delivered by non-specialists to allow for scale-up. Before a randomised controlled trial (RCT) evaluation of the fully task-shared PST can be conducted, funding is requested to:
1) Assess the validity and reliability of the PST's proposed outcome measures;
2) Examine the feasibility, acceptability and potential efficacy of delivering the PST programme by non-specialists.
Methods: Part 1 (validity and reliability study): Of the PST's proposed outcome measures, 3 questionnaires and 1 video-based measure have not previously been used in Ethiopia. Assessors will be trained to rate video-taped caregiver-child interactions using data from our clinical pre-pilot. To examine the validity and reliability of the 3 questionnaires, data will be collected in 300 help-seeking children presenting with DD (N=150) or other problems (N=150).
Part 2 (mixed methods, controlled before-after study): Four groups of 10 caregivers (N=40) will be enrolled in the PST (intervention arm); and contrasted with caregivers (N=40) in the control arm. Feasibility and acceptability will be monitored through participation, attendance, and questionnaire completion records, programme implementation fidelity, and a nested qualitative study. Outcome measures will be collected pre-, midway and post PST, and at 2 month follow-up.
Expected outcomes: This study will provide essential input to inform the design of a future RCT. The study findings can also inform implementation of the PST in other low-income countries.

Planned Impact

This project will provide essential insights in how a Parent Skills Training (PST) for caregivers of children with developmental disorders (DD) developed by the World Health Organization can be adapted to suit the needs of families in Ethiopia. The study will give a rich description of the acceptability and feasibility of delivering the PST by non-specialist facilitators. Moreover, the study will provide a preliminary indication of the ability of the PST to improve caregiver's competencies and children's behaviour and adaptive skills, providing the groundwork for a future large randomised controlled trial of the PST programme.

This study will be conducted in two rural areas in Ethiopia, Sodo and Butajira, where there are currently no services for children with DD and very few health or community workers with knowledge about DD. By training local community and healthcare staff as PST facilitators and providing mhGAP workshops to other primary and community healthcare workers and nurses, this study will directly contribute to capacity building and raising awareness of DD. We anticipate that this increased awareness will result in increased rates of identification of children with DD, a decrease in children being hidden away at home because of stigma in the community (something we know to be prevalent from previous studies; Tilahun et al., 2016; Tekola et al., 2016) and increased referral of relevant families to the PST programme. Our previous studies indicate that there is a great demand for the training included in the PST programme amongst families with a child with DD. Families taking part in our study will be able to benefit directly from the PST programme. If the project proposed here is successful, this work will inform scale-up so that larger groups of families can benefit from the programme in future. Moreover, local NGOs (e.g. schools for children with DD and community-based rehabilitation organisations) can use the PST materials for training of the families they support. Representatives of these NGOs provide us with valuable input through their membership of our PST Advisory Board; through this close and ongoing connection we are in a good position to disseminate the project findings widely.

The evidence collected in the study proposed will also allow for stronger advocacy for support for children with DD within the health system. Once there is evidence for an effective, scalable intervention, a compelling case can be made for inclusion of DD as an mhGAP priority disorder as scale-up of mental health care in the Ethiopian national health system proceeds.

Ultimately, this study will generate evidence on how to best adapt and implement a scalable and sustainable training programme for caregivers of children with DD in a context of high need and extremely limited provision. Implementing the programme in such a setting will not be without challenges; this study will provide crucial insights in these obstacles and how to best overcome them. The findings of this study are likely to apply to other low-income settings too, especially to other sub-Saharan African countries, where similar levels of stigma and lack of awareness have been reported (Bakare et al., 2009; Gona et al., 2015; Ambikile & Outwater, 2012). Our proposed project can inform future implementation of the PST programme in these settings.

Moreover, the lessons learned from this study may inform dissemination and implementation efforts in low resource and low awareness settings within high- and middle-income countries. Ethnic minorities and low socioeconomic status groups are underrepresented in intervention studies in high-income countries, and parents of children belonging to these demographic groups report receiving lower quality health care (Magaña, Parish & Son, 2015). The research findings from our study might thus also provide clues how to better reach these underserved groups in high-income settings, and how to better respond to their needs.

Publications

10 25 50
 
Description Advisory committee UNICEF developing recommendations and implementation guidance for early detection and early intervention for children at high risk for autism spectrum disorder.
Geographic Reach Multiple continents/international 
Policy Influence Type Participation in a advisory committee
 
Description Implementation CST into clinical practice child mental health clinic Addis Ababa
Geographic Reach Africa 
Policy Influence Type Influenced training of practitioners or researchers
Impact The Caregiver Skills Training pilot-tested in our grant had previously been pre-tested in a clinical setting in Addis Ababa. In our MRC grant we trained a cohort of non-specialist facilitators, who were supervised by specialists. Through this training the specialists became very engaged in the programme and through continuing supervision of the non-specialists they gained further experience in the training themselves. The specialists subsequently made the case in their clinic to start offering the training for caregivers of children with developmental disorders (DD) visiting the clinic. That is, the training will now be implemented in a clinical setting of one of the two only state hospital facilities for children with DD, outside a research context.
 
Description Informed revision of WHO Caregiver Skills Training manual
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
Impact Ethiopia was one of the first pilot sites of the caregivers Skills Training package, and the most low income setting in which the programme is being tested. From early drafts of the WHO's training materials our team has continued to provide detailed feedback, and we shared the adaptations we made to make the programme suitable for the Ethiopian context with the WHO CST team. In a recent revision of the programme materials for dissemination worldwide, WHO has implemented several revisions directly informed by our feedback and adaptations. These revisions will benefit the global community planning to adapt and implement the WHO CST programme in their setting.
 
Title adapted, translated and pilot tested existing questionnaires to Amharic 
Description Four existing measures that were previously unavailable in the Ethiopian local language Amharic have been adapted, translated and pilot tested for use in the Ethiopian context. Three of these measures are free to use: These measures concern: - the new WHO Caregiver knowledge and skills test, developed by WHO (not yet published) - the Autism Treatment Evaluation Checklist (Rimland & Edelson, 1999). A caregiver-reported tool assessing developmental skills and severity of symptoms of developmental disorders. - Communication profile Adapted (Bunning et al., 2014). A caregiver-reported questionnaire assessing the child's abilities and activities for communication, and participation in family and community events. The measure was initially developed in Uganda and subsequently adapted for use in Kenya, but has not yet been used elsewhere. 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2018 
Provided To Others? No  
Impact These measures can be used for further studies of developmental disorders in Amharic speaking populations. The substantial adaptations made to the ATEC may also be helpful for other settings intending to use the measure in low-literate populations. 
 
Title Pilot RCT of the WHO Caregiver Skills Training for families with children with developmental disorders or delays 
Description We successfully completed a pilot RCT in 66 families in rural Ethiopia. This pilot contributed to a research proposal for a full trial. We have just secured funding for a full-scale RCT of the WHO Caregiver Skills Training, to be conducted in Ethiopia and Kenya. The intention to fund letter has been received, we are in the final stages of contract negotiation before the funding can be formally announced. The RCT will take place 2020-2024. 
Type Therapeutic Intervention - Psychological/Behavioural
Current Stage Of Development Refinement. Clinical
Year Development Stage Completed 2019
Development Status Under active development/distribution
Clinical Trial? Yes
UKCRN/ISCTN Identifier www.pactr.org, PACTR201812802696820
Impact The pilot RCT was conducted in a rural very low income population. The WHO CST programme had not previously been tested in such a low resource context. Findings from our pilot RCT revealed the need for slight revisions to the WHO CST materials to ensure families with additional health and mental health needs would be identified in a timely manner and referred to existing health services. Our team therefore adapted the WHO materials and shared the adaptations with WHO, who have now made these available to other field testing teams across the world. Overall the findings from the pilot RCT were promising and inspired a research proposal for a large project, which has received recommendation for funding. 
URL https://pactr.samrc.ac.za/TrialDisplay.aspx?TrialID=5730
 
Description Contributed to a UNICEF/Autism Speaks consultation meeting, New York (24-26 Feb 2020), 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Third sector organisations
Results and Impact I was part of a working group of around 15 people, contributing to a technical consultation hosted by UNICEF to develop recommendations and implementation guidance for early detection and early intervention for children at high risk for autism spectrum disorder. The meeting was very effective and my contributions as well as those of other autism experts with experience in low-resource settings sparked a radical rethink of the team leading the working group.
Year(s) Of Engagement Activity 2020
 
Description International technical consultation and coordination meeting WHO CST programme 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A technical consultation and coordination meeting was held in Xiamen, China on 8 and 9 November 2018, attended by CST country team leads from across the globe. During this meeting our team provided an update of our research findings testing the CST in a rural Ethiopian setting, by far the most low resource and low literate setting of all testing sites. Our team shared the lessons learnt testing the programme in this context.
Year(s) Of Engagement Activity 2018
 
Description Interview for Spectrum News deep dive blog post and podcast 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact I engaged in detailed correspondence with a journalist from autism research news website Spectrum News and linked her up with several stakeholders in Ethiopia, including the founders of two autism schools. The journalist paid a visit to Ethiopia in September as a result and interviewed me and several other African autism researchers. Her 'deep dive' piece on autism in Africa, extensively quoting the founder of an autism school in Ethiopia and also quoting me talking about our MRC-funded project was published in December 2017 (https://spectrumnews.org/features/deep-dive/autism-remains-hidden-africa/ ) and republished in The Independent in the same month (http://www.independent.co.uk/news/long_reads/autism-children-africa-hidden-diagnosis-autistic-mental-disability-a8106106.html ). A podcast was subsequently produced contrasting the autism experience in Ethiopia (for which I was interviewed) with the experience in France. The podcast was published on 30 January 2018, https://spectrumnews.org/features/multimedia/podcasts/spectrum-stories-shifting-cultural-views-autism-abroad/.
Year(s) Of Engagement Activity 2017
URL https://spectrumnews.org/features/deep-dive/autism-remains-hidden-africa/
 
Description Invited speaker at the Regional meeting of the International Society for Autism Research (INSAR) in Chile (Oct 2019) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Around 500 health professionals and researchers from across Latin America attended my talk at the regional INSAR conference in Puerto Varas, Chile. My talk focused on the possible cultural and contextual factors that might affect the identification and diagnosis of autism across the world, including a reference to my MRC funded research. The talk was well received, with many in the audience approaching me afterwards, thanking me for giving a talk that was so directly relevant to their own context and clinical practice. The talk was video recorded and is freely available on YouTube, full URL below.
Year(s) Of Engagement Activity 2019
URL https://www.youtube.com/watch?v=saLy-lo-VmE&feature=youtu.be
 
Description Invited talk presenting PST findings to inform development of new WHO intervention targeting 0-3 year old children 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Presented findings of our PST study in Ethiopia at WHO technical consultation meeting in Rome (6 Dec. 2018) to inform the development of a new WHO intervention package targeting 0-3 year old children.
Year(s) Of Engagement Activity 2018
 
Description Oral presentation INSAR 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Hoekstra, R.A., Girma Bayouh, F., Tekola, B., Kinfe, M., Mihretu, A., Adamu, W., Carmo, E., Hanlon, C. The face of autism in Ethiopia: the expression, recognition, reporting and interpretation of autism symptoms in the Ethiopian context. 17th International Meeting For Autism Research INSAR, Rotterdam, May 2018.
Year(s) Of Engagement Activity 2018
 
Description Oral presentation INSAR 2019 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Oral presentation at the meeting of the International Society for Autism Research (INSAR) in Montreal, Canada, as part of the panel 'Lessons Learnt from the Field-Testing of the W.H.O. Caregiver Skills Training'. My talk focused on the research findings pre-testing the WHO Caregiver Skills Training in rural and urban Ethiopia.
Year(s) Of Engagement Activity 2019
URL https://insar.confex.com/insar/2019/webprogram/Paper30475.html
 
Description Participated in Autism Speaks Advocacy Leadership Network meeting, Addis Ababa, Ethiopia (28-30 Jan 2020) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Autism Speaks and WHO hosted an Autism Speaks Advocacy Leadership Network meeting in Addis Ababa, Ethiopia end January 2020. The meeting brought together autism researchers from Africa and autism advocates, primarily parents of children with autism, from across the African continent. I facilitated the meeting by connecting the organisers with autism stakeholders from Ethiopia. I also presented at the meeting, providing an update on our research in Ethiopia (primarily focusing on or MRC funded study). The meeting was very fruitful and resulted in concrete steps being taken to establish an Research and Advocacy network for autism and other developmental disorders in Africa.
Year(s) Of Engagement Activity 2020
 
Description Poster presentation at INSAR 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Tekola, B., Girma Bayouh, F., Kinfe, M., Tesfaye, M., Yenus, Z., WHO CST team, Servilli, C., Salomone, E., Pacione, L., Fekadu, A., Hanlon, C., Hoekstra, R.A. Adapting the WHO Caregiver Skills Training Programme for implementation in Ethiopia. 17th International Meeting For Autism Research INSAR, Rotterdam, May 2018.
Year(s) Of Engagement Activity 2018
 
Description Presentation at Regional Congress of the World Psychiatric Association (WPA), Addis Ababa, November 2018. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Bayouh, F, Tekola, B., Abdurahman, R., Kinfe, M., Yenus, Z., Markos, T., WHO CST team, Fekadu, A., Hanlon, C., Hoekstra, R.A. Adapting the World Health Organization's Caregiver Skill Training Program to implement in the Ethiopian setting: Formative research. Regional Congress of the World Psychiatric Association (WPA), Addis Ababa, November 2018.
Year(s) Of Engagement Activity 2018
 
Description Presentation during pre-conference workshop organised by WHO 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Gave presentation 'Adapting and pre-testing the WHO Caregiver Skills Training Programme in a very low resource setting: experiences from Ethiopia' during pre-conference workshop IACAPAP conference, Prague, 23 July 2018.
Year(s) Of Engagement Activity 2018
 
Description Talk for parents of children with autism around my visit to Durban, South Africa (August 2019). 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Around 50 parents of children with autism, representing the very diverse population of Durban, attended my talk, in which I presented our research in Ethiopia, including our efforts to develop and scale up services for families with children with autism. The talk led to lively questions afterwards, with parents indicating they were inspired hearing a talk about research conducted in low-resource settings like the context they themselves live in.
Year(s) Of Engagement Activity 2019
 
Description The University of Kwazulu Natal (Durban, South Africa) organised an 'Autism in Africa' symposium for researchers and health professionals (August 2019) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Around 60 health professionals and researchers and/or research students attended the 'Autism in Africa' symposium, which was organised by my collaborator at the University of Kwazulu Natal around my visit to the city. I presented three talks during the symposium, sparking questions and discussion afterwards.
Year(s) Of Engagement Activity 2019
 
Description WHO caregiver skills training expert consultation meeting in China 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact The World Health Organization (WHO) and the China Women's Development Foundation organised a WHO Caregiver Skills Training (CST) technical consultation meeting in Xiamen, China on 12 and 13 December. Our team (PI Dr Rosa Hoekstra and Co-I Dr Fikirte Girma) was invited to attend this meeting to present our research findings (funded by a previous grant from Autism Speaks and new MRC grant). The meeting was attended by research, policy and third sector teams from across the globe; each team gave a brief update on their work on the CST programme so far, Most teams are in the stage of hoping to implement the CST in future and/or adapting or translating the programme materials. Having conducted a comprehensive consultation and adaptation phase in Ethiopia and pre-piloted the programme in a clinical setting, our team in Ethiopia was in a more advanced stage than most other countries and able to advise other countries in the approach to take. Detailed discussions were had with a research team from Kenya to exchange experiences testing the programme, and advice and consultations were provided to teams in Nepal, Argentina and China hoping to conduct similar work in their respective countries in future.
Year(s) Of Engagement Activity 2017
 
Description conference presentation Regional International Meeting for Autism Research, Stellenbosch, September 2017. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Girma Bayouh, F., Hanlon, C., Klasen, C., Yenus, Z., Tesfaye, M., WHO PST team, Fekadu, A., Hoekstra, RA. Adapting the World Health Organization's Parent Skill Training program to the Ethiopian setting: formative research. Regional International Meeting for Autism Research, Stellenbosch, September 2017.

Presentation sparked discussion among African researchers adapting and testing the Parent Skill Training programme.
Year(s) Of Engagement Activity 2017