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

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.

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.

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.