Simelane, S.R. and de Vries, P.J., 2021. Child and adolescent mental health services and systems in low and middle-income countries: from mapping to strengthening. Current Opinion in Psychiatry (2021). DOI: 10.1097/yco.0000000000000740.
The challenges in child and adolescent mental health services and systems (CAMHSS) in low and middle income countries (LMICs) are well described with little change over the past two decades. Fortunately, research has started to move from system 'mapping' towards systems 'strengthening'. In this paper, literature describing CAMHSS and systems strengthening research in LMICs over the last 18 months was reviewed using the WHO Assessment Instrument for Mental Health Systems (WHO-AIMS) framework. For more information, click here.
Kumm, A.J., Viljoen, M. & de Vries, P.J. The Digital Divide in Technologies for Autism: Feasibility Considerations for Low- and Middle-Income Countries. J Autism Dev Disord (2021). https://doi.org/10.1007/s10803-021-05084-8
Digital technologies have the potential to empower individuals with autism and their families. The COVID-19 pandemic emphasized and accelerated the drive towards technology for information, communication, training, clinical care and research, also in the autism community. However, 95% of individuals with autism live in low- and middle-income countries (LMIC) where access to electricity, internet and the ever-increasing range of digital devices may be highly limited. In this article, Kumm and colleagues evaluated the feasibility of six emerging technologies for autism spectrum disorders, and reflected on key considerations for implementation in LMIC contexts to ensure that we do not inadvertently widen the pre-existing digital divide. Click here for more details.
No reviews to date have summarized the views of parents on the functional challenges and/or strengths of their children with autism spectrum disorder. In this scooping review Marisa Viljoen and colleagues identify and collate global results to provide a broad description of parental perspective of functioning. Results are summarised using the International Classification of Functioning Disability and Health–Child and Youth version framework.Click here for more details.
Pillay S, Duncan M, de Vries PJ. Autism in the Western Cape province of South Africa: Rates, socio-demographics, disability and educational characteristics in one million school children. Autism. May 2021
This study by Sarosha Pillay, Madeleine Duncan, and Prof Petrus de Vries is the first to inform the rates, distribution and profile of needs of children with autism spectrum disorder (ASD) in a South African education system. The authors performed a comprehensive database search of all children with ASD in the formal education system in the Western Cape and compared the findings with population demographic expectations of the province. ASD and co-occurring conditions were identified at lower rates than expected with a disproportionate representation of self-reported race and language of the ASD sample compared to the Western Cape demographics. The majority of children with ASD attended special schools in urban areas. Strengthening of education systems for children with ASD in South Africa is proposed. The article can be accessed here.
Liezl Schlebusch, Nola J. Chambers, John-Joe Dawson-Squibb, Michal Harty, Lauren Franz, Petrus J. de Vries, Challenges and opportunities of implementing early interventions for autism spectrum disorders in resource-limited settings: A South African example, Starting At the Beginning, 10.1016/B978-0-12-819749-3.00005-1, (99-132), (2020). Improving access to care for young children with autism and their families, particularly those living in resource-limited settings, is a complex challenge that requires innovative solutions and multi-sectoral action. The authors offer a new approach to tackle the complex challenge by considering five fundamental aspects - selecting effective interventions, ensuring effective implementation, establishing an understanding of the local context and setting, being guided by a deep knowledge of the intervention beneficiaries, and using a pragmatic evaluation approach.
While the authors focus on work done in South Africa and on the African continent, the chapter should be of direct relevance to clinicians, researchers and policy-makers who work in other low- and middle- income countries, other resource-limited settings, and in culturally diverse contexts. Click here for more information.
Viljoen M, Mahdi S, Griessel D, Bölte S, de Vries PJ. Parent/caregiver perspectives of functioning in autism spectrum disorders: A comparative study in Sweden and South Africa. Autism. 2019;23(8):2112-2130.
Functional outcomes in Autism Spectrum Disorder can be highly variable due to heterogeneous nature of autism spectrum disorder and its interaction with environmental factors. In this paper Marisa Viljoen and colleagues compare parent/caregiver perceptions of functioning in two divergent countries that participated in the International Classification of Functioning Disability and Health (ICF) Core Set for Autism Spectrum Disorder development study. Click here for more details.
Dawson-Squibb JJ, de Vries PJ. Developing an Evaluation Framework for Parent Education and Training in Autism Spectrum Disorder: Results of a Multi-stakeholder Process. J Autism Dev Disord. 2019 Nov;49(11):4468-4481.
Despite the need for parent education and training programmes in autism spectrum disorder (ASD), there is no generally-accepted evaluation framework to select programmes for different settings. Here, the authors, John-Joe Dawson-Squibb and Petrus de Vries generated an evaluation framework using a multi-stakeholder, implementation science approach. Purposive sampling identified ASD experts, implementation/health systems experts, and parents/carers of individuals with ASD. A consensus-building stakeholder workshop with 14 stakeholders and thematic analysis was used to generate themes and components of the framework. Main themes included ‘Outcomes’ (parent, child, family and community), ‘Processes and Procedures’ (accessibility, acceptability, psychological process, and referral pathways) and ‘Implementation Landscape’ (sustainability, scalability, integration and coordination, and monitoring and evaluation). The authors proposed that the evaluation framework and Evaluation Framework Checklist generated could guide clinicians, researchers and policy-makers. The article can be accessed here
Makombe CBT, Shabalala N, Viljoen M, Seris N, de Vries PJ, Franz L. Sustainable implementation of early intervention for autism spectrum disorder through caregiver coaching: South African perspectives on barriers and facilitators. Pediatr Med. 2019 Aug;2:39.
A lack of specialists, and insufficient infrastructure and funding to scale early interventions for autism spectrum disorder (ASD) characterize low-resource settings. Integration of early intervention methods that utilize non-specialists, and involve caregivers, into existing systems of care, offers the best hope to address such unmet needs. In South Africa, a caregiver coaching intervention, informed by principles of the Early Start Denver Model (ESDM) was adapted for delivery by non-specialist Early Childhood Development (ECD) practitioners. This study explored perceived barriers and facilitators to sustainable implementation of this approach. Click here for more details.
Kaminer, D., & Shabalala, N. (2019). Developing a student mental health policy for a South African university: Consultation, contestation and compromise. South African Journal of Higher Education, 33(5), 196-212.
Given high rates of student mental health difficulties globally, the need for universities to have a student mental health policy has been increasingly recognised. In the South African context, such policies must not only balance the mental health needs of students with the realistic constraints of university resources in a time of austerity, but also engage with complexities posed by the Global North foundations of the fields of psychology and psychiatry and the systemic determinants of mental health. This article describes the development of a student mental health policy at a South African university, with a focus on points of contestation that emerged out of a broad-based institutional consultation process. Areas of contestation included the scope of university support for student mental health, defining mental health difficulties, the use of a disability framework for mental health, and processes of verification. All of these were embedded within a broader tension between health and social justice discourses. The compromises that were designed to balance these complexities within the student mental health policy are discussed, and reflections are offered that may inform the development of student mental health policies at other South African universities. Click here for more details.
Ramseur, K., de Vries, PJ, Guler, J., Shabalala, N. & Franz, L. (2019). Caregiver descriptions of joint activity routines with young children with autism spectrum disorder in South Africa. Pediatric Medicine, Vol 2.
Coaching caregivers to deliver Naturalistic Developmental Behavioral Intervention (NDBI) strategies to their young child with autism spectrum disorder (ASD) could help address the provider capacity barrier in sub-Saharan Africa. However, the behavioral and developmental research that underpins NDBIs is overwhelmingly drawn from high resource settings. Therefore, our understanding of joint activity routines, including play and family routines in which NDBI strategies are embedded, may have limited applicability in low resource, culturally diverse environments. Important questions remain on how to adapt NDBIs to be relevant in the family lives in these settings. This study aimed to elicit descriptions of joint activity routines from caregivers of young children with ASD in South Africa, to understand whether an NDBI-informed caregiver coaching could ‘fit’ within the multicultural, multilingual South African context. Results from focus groups with caregivers suggest that South African caregivers of young children with ASD DO use joint activity routines to engage their children and teach them new skills, thus suggesting a degree of ‘fit’ between South African caregiver-child interactions and an NDBI-informed caregiver coaching approach. This article can be accessed here.
Hampton LH, Harty M, Fuller EA, Kaiser AP. Enhanced milieu teaching for children with autism spectrum disorder in South Africa. Int J Speech Lang Pathol. 2019 Dec;21(6):635-645.
Efficient and effective interventions are required to meet the communication needs of children with autism spectrum disorders (ASDs) in South Africa. This multiple baseline study examined the effects of therapist-implemented enhanced milieu teaching (EMT) on the diversity and frequency of spoken language of three children with ASD in South Africa. A moderate functional relation was demonstrated between the introduction of EMT and increases in (1) the number of different words and (2) the number of spontaneous utterances used by each participant. Some evidence of generalisation to novel partners and contexts was observed. We concluded that EMT may be effective for improving communication in South African children with ASD. Implications for clinical practice and cultural and linguistic adaptations are discussed. Click here for more details.
There is increasing evidence that early intervention has positive outcomes for parents of children with neurodevelopmental disabilities. Parental self-efficacy has been used as an outcome measure in some empirical studies; however, there is a lack of evidence of the impact of parent training programmes on parenting self-efficacy beliefs. In this systematic review, we set out to assess the effectiveness of parenting interventions to increase parental self-efficacy levels in parents of young children with neurodevelopmental disabilities. We found that parent training programmes are effective in increasing parental self-efficacy in parents of children with neurodevelopmental disabilities and that parents of children younger than 5 years demonstrated the highest increase in levels of parental self-efficacy after parenting interventions. Furthermore, this review showed that psychologists and other healthcare practitioners are successfully able to implement training programmes that enhance parenting self-efficacy. More details can be accessed here.
Franz, L., Adewumi, K., Chambers, N., Viljoen, M., Baumgartner, J. N., & de Vries, P. J. (2018). Providing early detection and early intervention for autism spectrum disorder in South Africa: stakeholder perspectives from the Western Cape province. Journal of child and adolescent mental health, 30(3), 149–165. https://doi.org/10.2989/17280583.2018.1525386
We set out to examine key stakeholder perspectives on early detection and intervention for autism spectrum disorder (ASD) in South Africa. We focused on eight senior management level stakeholders in the Western Cape province, two each from government’s Health, Education, and Social Development, and the non-profit sector. The National Integrated Early Childhood Development Policy was identified as the most relevant to early detection and intervention. This policy, however, is not ASD specific. This lack of specificity is in keeping with an emerging theme: ASD was only seen within the context of other developmental disabilities, particularly by Health and Social Development. Specific ASD early detection and intervention may not currently align with Health and Social Development departmental goals even though these departments are primarily responsible for identifying and providing services and financial support to young children with ASD. Increased ASD knowledge and local South African statistics on prevalence, burden and associated costs may alter this approach. At this time, ASD early intervention may be more closely aligned with Education department goals. Click here for more details.
Professionals in low‐ and middle‐income countries urgently need training to recognise red flags of autism in very young children. Autism Navigator® for Primary Care is a web‐based course designed to increase awareness of red flags of ASD in the second year of life and thus promote earlier detection and referral for intervention. It contains extensive video illustrations that offer rapid access to multiple exemplars of ASD red flags. The feasibility of utilising the Autism Navigator® for Primary Care course was explored with 62 South African professionals. After training, professionals' knowledge of early red flags improved, and most reported the course important and needed in South Africa. They found the web‐based design mostly acceptable, practical, and culturally applicable. We propose that, with some modifications, this training has the potential to lower the age of detection of autism spectrum disorders. For further details click here.
Mokitimi, S., Schneider, M. & de Vries, P.J. Child and adolescent mental health policy in South Africa: history, current policy development and implementation, and policy analysis. Int J Ment Health Syst 12, 36 (2018).
Mental health problems represent the greatest global burden of disease among children and adolescents. There is, however, lack of policy development and implementation for child and adolescent mental health (CAMH), particularly in low- and middle-income countries (LMICs) where children and adolescents represent up to 50% of populations, including South Africa. This study by Stella Mokitimi, Marguerite Schneider and Petrus de Vries, sought to examine the history and current state of CAMH policy development and implementation in South Africa, and to perform a systematic analysis of all available CAMH service-related policies. We found that in spite of South Africa’s upper-middle income status, there were no publically-available provincial CAMH policy documents. There is an urgent need to develop and implement CAMH policies in South Africa and other LMICs. Further research will be required to identify and explore the barriers to policy development and implementation, and to service development and scale-up in CAMH. Further details can be accessed here.
Dawson-Squibb J-J, Davids EL, de Vries PJ. Scoping the evidence for EarlyBird and EarlyBird Plus, two United Kingdom-developed parent education training programmes for autism spectrum disorder. Autism. 2019;23(3):542-555.
EarlyBird and EarlyBird Plus are parent education and training programmes designed by the UK National Autistic Society in 1997 and 2003, having been delivered to more than 27,000 families in 14 countries. These group-based programmes aim to (1) support parents immediately after diagnosis of autism spectrum disorder, (2) empower parents, encouraging a positive perception of their child’s autism spectrum disorder and (3) help parents establish good practice. In the absence of any previous comprehensive review, John-Joe Dawson-Squibb, Eugene Davids and Petrus de Vries performed a scoping review of all peer-reviewed publications on the two programmes. The goal of the review was to determine the level and extent of evidence for such widely used programmes. The review explored the context, study populations, design, outcome measures, and where focus was on parental perception, parental changes or child changes and programme feasibility. The article can be accessed by clicking here.
A number of studies in lower-and middle-income countries have called for greater caregiver involvement in intervention delivery as a cost effective means of providing services and addressing the capacity barrier. However, the majority of caregiver coaching interventions have been developed in high-income settings and need to be adapted to enhance ‘fit’ with the local setting. In a recent publication Jessy Guler, Petrus de Vries, Noleen Seris, Nokuthula Shabalala and Lauren Franz assessed which contextual factors caregivers of young children with ASD in South Africa deemed important in early intervention. A broader goal of this publication was to inform the process of adaptation of caregiver coaching early ASD intervention for new contexts. The article can be accessed by clicking here.
Lesia Smith from the Centre of Autism Research in Africa (CARA) translated and examined the cultural appropriateness of the Autism Diagnostic Observation Schedule-2 in Afrikaans. The findings from her study “highlighted unique aspects of the language (‘Kaaps’) that need to be considered during Autism Diagnostic Observation Schedule-2 administration. The social interaction demands of the Autism Diagnostic Observation Schedule-2 appeared appropriate, and sufficient familiarity with Autism Diagnostic Observation Schedule-2 materials and activities was found to support the use of the Autism Diagnostic Observation Schedule-2”. To access the full-text of her manuscript in Autism click here.
Autism Spectrum Disorder (ASD) is considered a global public health concern, yet little is known about ASD in sub-Saharan Africa. In a recent review by Lauren Franz, Nola Chambers and Petrus de Vries from the Centre of Autism Research in Africa aimed to address the gap in our understanding of ASD in sub-Saharan Africa, and recommends “a substantial need for large-scale clinical, training and research programmes to improve the lives of people who live with ASD”. The review published in Autism Research can be accessed by clicking here.
A great need exists for culturally appropriate tools, particularly in detecting symptoms of Autism Spectrum Disorder (ASD). Nola Chambers and some of her colleagues examined early detection of ASD in isiZulu-speaking children in South Africa. The study was published in Autism and can be accessed by clicking here.
For full details about publication, please see ResearchGate profiles of individual staff members.