Manage Feeding Difficulties in Children with Autism in South Africa

Feeding difficulties in children with autism have significant implications for the healthcare system, education system, and society in South Africa. Many families of children with autism face food insecurity and rely on expensive and unhealthy fast foods, exacerbating the burden on healthcare resources. Limited access to appropriate feeding interventions tailored to the South African context further challenges affected children, their families, and healthcare practitioners.

This study aims to develop culturally and contextually relevant digital and clinical feeding interventions for children with autism in South Africa. It will involve stakeholder engagement and training to ensure that the developed interventions are effectively integrated into clinical settings and reach the intended target population.

ONGOING WORK

Systematic Review

(Led By Dr Skye Adams)

Dr. Skye Adams is leading a scoping review to identify current feeding management strategies for children with autism and available programs to identify the most recent and up-to-date strategies. Current research programs on interventions for children with autism and associated feeding difficulties across disciplines will be used to assist with the development of the feeding intervention and will build on from Skye's doctoral research which focused on management from a speech therapy perspective. This information will be tabulated and correlated with availability of resources and appropriateness for the context of the proposed study and include classification of strength using the GRADE (Grades of Recommendation, Assessment, Development and Evaluation Working Group) approach. Programs will explore evidence-based practice and appropriacy to the South African context.

Co-Design Study

(Led By Dr Edith Luhanga)

There are an increasing number of apps to promote feeding of children with autism. These include Autism Diary, Autism Food Coach 2, etc. However, there has been little research on what types of apps parents and health workers in the African context need. We are running focus groups and surveys with parents and health workers to jointly design child-feeding applications for South African users.

Investigators

Dr Skye Adams

Skye Adams is an associate lecturer at the University of the Witwatersrand in Johannesburg, South Africa. She holds an MSc from University College London, where her research focused on the development of complex language structures. Her primary research interests include pediatric neurogenic communication disorders, pediatric dysphagia, and language development.

Skye specializes in implementing dysphagia management programs for children with Cerebral Palsy in care facilities in Johannesburg. Her work aims to improve the quality of life and communication abilities of children with these challenges through evidence-based interventions and comprehensive care strategies.

Skye's expertise in speech pathology and her dedication to advancing pediatric neurogenic communication and swallowing disorders make her an invaluable asset to our project on improving child nutrition for children with autism through digital interventions.

Dr Edith Luhanga

Edith Luhanga joined CMU-Africa as a postdoctoral researcher in June 2021 and transitioned to assistant research professor in September 2022. Prior to that, she was a lecturer at the Nelson Mandela African Institution of Science and Technology in Tanzania (NM-AIST). She holds a Ph.D. in information science from Nara Institute of Science and Technology in Japan, an MSc in advanced computing science, and a BEng (Hons) in electronic and computer engineering from the University of Nottingham, UK.

Luhanga’s research focuses on designing theory-based behavior change systems that consider people’s personal and socio-cultural contexts, through a human-centered approach. Her main domains of interest are health (particularly nutrition, maternal and child health, and disabilities management), financial inclusion, and privacy and security.

She was the deputy project leader for a 10-year project on capacity building through digital technologies at NM-AIST and served as Tanzania’s representative to the UNESCO intergovernmental committee on drafting recommendations on the ethics of artificial intelligence in 2021.

OBJECTIVE

The primary goal of this study is to evaluate the effectiveness of current technological solutions in managing feeding challenges and to propose improvements through the design and development of new mobile applications. These applications aim to educate, train, and support parents in implementing effective feeding interventions at home, with a particular emphasis on the African context.

Expected Outcomes

The study will provide a thorough understanding of the current technological landscape and its impact on managing feeding challenges in children with autism. By identifying gaps and proposing enhancements, the research will lead to the development of a low-fidelity prototype that incorporates the necessary features to support parents and therapists. Ultimately, this research aims to offer valuable insights for creating more effective and culturally relevant digital solutions, improving the feeding experience, and enhancing the nutritional outcomes for children with autism.

Significance

This study is significant as it addresses an often-overlooked aspect of autism management—feeding challenges. By focusing on creating digital interventions tailored to the unique needs of families, especially in underrepresented regions like Africa, the research seeks to make a meaningful impact on the lives of children with autism and their caregivers.

Research Team

Arshima Khan

Arshima Khan is an independent research consultant with a focus on social and public health projectssuch as tobacco control, HIV, autism research and maternal health. Arshima is a Research Psychologist registered with the Health Professionals Council of South Africa (HPCSA) and is currently a PhD Psychology fellow at the University of the Witwatersrand.

Arshima’s primary research interests lie at the intersection of feminist theory, critical perspectives, and public health, where she explores the socio-political dimensions of health and advocates for equity and justice in health and policy. Her past research projects have explored issues such as tobacco control and the interference of the tobacco industry, the narratives of working mothers navigating the demands of the COVID-19 pandemic, and perspectives on HIV services and healthcare.

Christopher Kuzagbe

Christopher Cofie Kuzagbe is a graduate student at Carnegie Mellon University Africa, pursuing an MSc in Information Technology with a strong interest in research. He holds a BSc in Computer Science from the African Leadership University, where he focused on Human-Centered Design, Research, and Software Engineering.

Christopher is a co-founder of two startups in East Africa and has extensive experience working as a UI/UX Engineer across various industries. As a recipient of the prestigious Mandela Centennial Scholarship Program, he has demonstrated both academic excellence and leadership.

His expertise spans UI/UX Design, Product Management, and Software & Business Architecture, with proficiency in JavaScript, ReactJS, ExpressJS, and a variety of web technologies. Christopher remains deeply passionate about Human-Centered Design, ensuring users remain at the core of his design and development processes.

Fabrice Mukarage

Fabrice Mukarage is a graduate student at Carnegie Mellon University Africa, pursuing an MSc in Information Technology with an interest in research. He holds a BSc in Computer Science from Ashesi University, with a focus on Software Engineering and Web Technologies.

Fabrice has a background in research and software engineering, including internships at Princeton University, where he worked alongside and under the mentorship of professional Research Software Engineers to build, develop, and optimize the Scikit-HEP/hist project, and at Microsoft in Nigeria, where he worked on a web application for COVID-19 vaccine tracking.

Fabrice is skilled in JavaScript, ReactJS, PHP, and various web technologies, with a strong interest in user-centered design. He is currently working on managing feeding difficulties in children with Autism in South Africa as an intern.

Current Work

Coming Soon

Contact Us

Email: arshimakhan.9@gmail.com

Tel: +27794023086

Ethics number: H230701