'We wait and we wait'-caregiver perspectives on autism spectrum disorder services in the Western Cape Province of South Africa.

INTRODUCTION: Caregivers of children with autism face significant challenges in navigating health, education and other systems of care to ensure appropriate services for their children. In South Africa, for example, many children with autism are reported to be out of schools and waiting long periods for specialist school placements thus adding to the burden of care for caregivers and raising many questions about equity, diversity and inclusion. METHODS: Here we performed a qualitative study using focus groups to collect data on the perspectives of caregivers of children with autism waiting for school placement in the Western Cape Province of South Africa. We asked families about their experiences of current autism services and for suggestions to improve service delivery. RESULTS: The main theme that emerged was 'We wait and we wait'. Caregivers expressed high levels of frustration with existing autism educational and other services. Perspectives about services were captured under three categories. The first category, 'The costs of waiting' describes the socioemotional, financial and time costs associated with having a child with autism wait for educational services. The second category 'Barriers while waiting' describes the attitudinal, structural, process and communication barriers experienced by caregivers while seeking services for their children. The final category 'Expecting action' describes attitudinal, service and policy expectations that caregivers felt could improve service delivery. Caregivers provided 10 recommendations for autism service improvements. CONCLUSION: Caregivers of children with autism waiting for educational services in the Western Cape Province of South Africa expressed dissatisfaction with existing services. Efforts to find solutions to providing services and support to children with autism waiting for educational services and their caregivers should be prioritized.

'We are doing damage control': Government stakeholder perspectives of educational and other services for children with autism spectrum disorder in South Africa.

LAY ABSTRACT: Autism spectrum disorder is a growing public health concern in low- and middle-income countries like South Africa where there are no plans or policies in place for autism spectrum disorder management. Many children with autism spectrum disorder in South Africa are out of schools and waiting for school placement to become available. This study explored the perspectives of key government stakeholders on educational and other services for children with autism spectrum disorder in the Western Cape Province of South Africa and their suggestion for improving services for these children and their families. Semi-structured interviews were conducted with government stakeholders from the Western Cape Department of Education, Department of Health and the Department of Social development. The main theme that emerged was 'We are doing damage control'. Government stakeholders acknowledged that autism spectrum disorder services were being overlooked because of other demands on government resources. Finding from this study highlighted the need for government departments to work together to develop a strategy for autism spectrum disorder management. Engagement between government and civil society to break down barriers, strengthen systems and develop solutions to improving access to services for children with autism spectrum disorder and their families is recommended.

"We are doing the best we can to bridge the gap" - service provider perspectives of educational services for autism spectrum disorder in South Africa.

Background: The South African education system is increasingly unable to meet the growing needs of children with autism spectrum disorder (ASD). Recent studies in the Western Cape, one of the better resourced provinces in South Africa, showed that the pathway to care for children with ASD was an inconsistent and lengthy process, and that many children with ASD waited for extended periods to get access to an appropriate school placement. It is therefore clear that scalable and sustainable solutions are required to improve access to appropriate education for children with ASD. Methods: Here we performed a qualitative study using thematic analysis of ten multi-sectorial ASD service provider interviews in the Western Cape Province to examine provider perspectives and proposed solutions to meet the educational needs of children with ASD. Results: Provider perspectives were grouped in three categories: "bridging the gap across the spectrum and lifespan", "gaps to bridge", and "building bridges". The first category captured provider perspectives of the service-related needs inherent to a diagnosis of ASD. The second category summarized service provider views of the challenges associated with providing services to children with ASD and the third category captured provider perspectives on potential actions to improve ASD education services delivery in the province. The overarching theme that emerged was "We're doing the best we can to bridge the gap". Conclusion: Participants provided ten key recommendations for service strengthening that may lead to contextually relevant innovations to meet the educational needs of children with ASD in the province. Findings from this study has direct relevance to other South African provinces and may have relevance to improve pathways and reduce service delivery gaps also in other low-and-middle-income countries.

Who's waiting for a school? Rates, socio-demographics, disability and referral profile of children with autism spectrum disorder awaiting school placement in the Western Cape Province of South Africa.

LAY ABSTRACT: In South Africa, there are limited educational opportunities for children with autism spectrum disorder and many children with autism spectrum disorder have to wait for school placement. This study examined the education waiting list for children with autism spectrum disorder in the Western Cape Province of South Africa and reported on the demographic, disability, referral and service provision characteristics of these children. In June 2016, there were 744 children with definite autism spectrum disorder or possible autism spectrum disorder between the ages of 1 and 17 years waiting for school placement. There were children of compulsory school-going age who were reported to be at home and not receiving any intervention while they waited. More than half the children on the waiting list had been waiting for more than a year. We then combined the findings of this study with the findings of a previous study on children with autism spectrum disorder already attending schools in the province over the same period of time. We found a total of 1684 children known to have autism spectrum disorder - this was less than 0.1% of all young people in the province at the time. Between 2012 and 2016, there was a 276% increase in the number of children with autism spectrum disorder waiting for schools in the Western Cape. The results show that education systems in the Western Cape need to be strengthened to accommodate all children with autism spectrum disorder in appropriate education settings from as early as possible. We recommend engaging with different stakeholders to develop policies, best practice guidelines and actions for autism spectrum disorder education in South Africa.

Autism in the Western Cape province of South Africa: Rates, socio-demographics, disability and educational characteristics in one million school children.

LAY ABSTRACT: There is very little information about autism spectrum disorder in South Africa and not much is known about children with autism spectrum disorder and their educational needs. In this study, we searched for all children with autism spectrum disorder attending schools in the Western Cape province of South Africa and compared our findings with the profile of people living in the province. We found fewer children with autism spectrum disorder in schools than expected (0.08%) and co-occurring conditions (intellectual disability = 22.2%, attention-deficit/hyperactivity disorder = 2.6% and epilepsy = 0.7%) were reported at lower rates. More children were from White racial groups and from English-speaking homes compared with the Western Cape population demographics. Most of the children (89%) attended schools for children with Special Educational Needs and only 10% were in Ordinary/Mainstream schools. Eighty-three percent attended schools in urban areas and 17% in rural areas. There was a 76.03% increase in children with autism spectrum disorder in schools between 2012 and 2016. Our findings support the need for better identification and reporting of children with autism spectrum disorder in the education system. We propose urgent review and strengthening of education systems for children with autism spectrum disorder in the Western Cape province and in other parts of South Africa.

The quality of life of people with leprosy-related residual impairment and disability in Malawi--is there a difference between people living in a leprosarium and those re-integrated into their communities?

INTRODUCTION: To compare the quality of life of people affected by leprosy living in a leprosarium and those reintegrated in communities in the southern region of Malawi. DESIGN: A translated version of the World Health Organization Quality of Life BREF questionnaire (WHOQOL-BREF) was administered among two groups of people with leprosy-related residual impairment and disability living in either a leprosarium (male 47, female 53) or re-integrated into communities (male 41, female 57). The cross-sectional quantitative survey was conducted by trained Leprosy Control Assistants (LCAs). Descriptive statistics of mean and standard deviation were used to summarise the data while differences between the groups were evaluated using independent t-test. Level of significance was set at P < 0.05. RESULTS: Demographic data revealed that there were more residents of an older age in the leprosarium. There was no statistically significant differences in the WHOQOL-BREF mean scores between by those affected by leprosy living in the two contexts. Statistically significant differences existed in the psychological, physical and environmental domains when age and gender were used as confounding factors. CONCLUSIONS: We conclude that there is need to provide interventions that will encompass age and gender to all those affected by leprosy to improve their quality of life in both contexts.

Health Sciences undergraduate education at UCT: a story of transformation.

Undergraduate education and training in the Faculty of Health Sciences at the University of Cape Town has become socially responsive. A story of transformation that is consonant with wider societal developments since the 1994 democratic elections, outlining the changes in undergraduate curricula across the faculty, is presented.

Developing health science students into integrated health professionals: a practical tool for learning.

BACKGROUND: An integrated sense of professionalism enables health professionals to draw on relevant knowledge in context and to apply a set of professional responsibilities and ethical principles in the midst of changing work environments 12. Inculcating professionalism is therefore a critical goal of health professional education. Two multi-professional courses for first year Health Science students at the University of Cape Town, South Africa aim to lay the foundation for becoming an integrated health professional 3. In these courses a diagram depicting the domains of the integrated health professional is used to focus the content of small group experiential exercises towards an appreciation of professionalism. The diagram serves as an organising framework for conceptualising an emerging professional identity and for directing learning towards the domains of 'self as professional' 45. OBJECTIVE: This paper describes how a diagrammatic representation of the core elements of an integrated health professional is used as a template for framing course content and for organising student learning. Based on the assumption that all health care professionals should be knowledgeable, empathic and reflective, the diagram provides students and educators with a visual tool for investigating the subjective and objective dimensions of professionalism. The use of the diagram as an integrating point of reference for individual and small group learning is described and substantiated with relevant literature. CONCLUSION: The authors have applied the diagram with positive impact for the past six years with students and educators reporting that "it just makes sense". The article includes plans for formal evaluation. Evaluation to date is based on preliminary, informal feedback on the value of the diagram as a tool for capturing the domains of professionalism at an early stage in the undergraduate education of health professional students.

Not just another multi-professional course! Part 2: nuts and bolts of designing a transformed curriculum for multi-professional learning.

Multi-professional education has traditionally aimed to develop health professionals who are able to collaborate effectively in comprehensive healthcare delivery. The respective professions learn about their differences in order to work together, rather than developing unity in their commitment to a shared vision of professionalism and service. In this, the second of two papers, the 'nuts and bolts' or practicalities of designing a transformed curriculum for a multi-professional course with a difference is described. Guidelines for the curriculum design process, which seeks to be innovative, grounded in theory and relevant to the learning of the students and the ultimately the health of the patients, include: valuing education; gaining buy-in; securing buy-out; defining of roles; seeking consensus; negotiating difference and expediting decisions. The phases of the design process are described, as well as the educational outcomes envisaged during the process. Reflections of the designers, in particular on what it means to be a multi-professional team, and a reconceptualization of multi-professional education are presented as challenges for educators of health professionals.

Not just another multi-professional course! Part 1. Rationale for a transformative curriculum.

Undergraduate inter- and multi-professional education has traditionally aimed to develop health professionals who are able to collaborate effectively in comprehensive healthcare delivery. The respective professions learn from and about each other through comparisons of roles, responsibilities, powers, duties and perspectives in order to promote integrated service. Described here is the educational rationale of a multi-professional course with a difference; one that injects value to undergraduate health professional education through the development of critical cross-field knowledge, skills and attitudes that unite rather than differentiate professions. The aim of this course, offered at the Faculty of Health Sciences, University of Cape Town, is to lay an integrated, pan-professional foundation for the advancement of collective commitment to and understanding of national health and social development objectives such as primary health care, human rights and professionalism. Pan-professional refers to curriculum content that is core and of critical relevance to all participating professions. What is learned, how it is learned, how learning is facilitated and how it is applied, has been co-constructed by a multi-professional design team representing a range of health professions (audiology, medicine, occupational therapy, nursing, physiotherapy and speech therapy) and academic disciplines (anthropology, sociology, psychology, history, African studies and social development, information technology and language literacy). Education specialists facilitate the ongoing design process ensuring that the structure and content of the curriculum complies with contemporary adult learning principles and national higher education imperatives. Designing the original curriculum required the deconstruction of intra-professional and disciplinary canons of knowledge and ways of 'doing things' in order to identify and develop shared interpretations of critical epistemology and axiology for health professional practice in the South African context. This enabled the alignment of the learning objectives, at first year level, of all the represented professions. The educational rationale guiding the curriculum design process is discussed in Part 1 of two articles. Part 2 describes the 'nuts and bolts' or practicalities of the curriculum design process.

Early involvement in a multiprofessional course: an integrated approach to the development of personal and interpersonal skills.

WHAT IS ALREADY KNOWN IN THIS AREA • Many papers describing multiprofessional educational activities relate to activities occurring late into curricula activity. • Meta-analyses demonstrate multiprofessional learning only becoming effective when students are placed in a working environment. • Scant attention is placed upon the early development of students, recognising the need to 'grow into professionalism' and sharing the development of those skills so relevant to both unprofessional and multiprofessional life. WHAT THIS WORK ADDS • This paper describes an early-exposure activity, related to multiprofessional learning, in which students share the learning of common requirements for professional development, and evaluate their experience in a positive manner. SUGGESTIONS FOR FUTURE RESEARCH • The real benefit to multiprofessional life and real-world activity will only be truly evaluated as their individual courses develop and the newly found skills of reflection are allowed to develop.