Conducting Focus Group Discussions on Autism Spectrum Disorders in South Africa: Challenges and Ethical Issues
Autism spectrum disorder (ASD) is a growing public health concern in low- and middle-income countries (LMIC). Evidence-based early autism intervention can significantly enhance cognitive abilities and adaptive behaviors and improve quality of life for child and family. However, stakeholder perceptions of acceptability and feasibility of early ASD interventions are not well understood, particularly in LMIC. Qualitative methods, such as focus group discussions, can generate critical formative information about key issues such as caregiver goals for their child, current ASD services, parent-child play, and attitudes towards caregiver-mediated early autism intervention. Despite the importance of qualitative data, there are scant qualitative papers published on ASD in Sub Saharan Africa. We describe challenges and ethical issues conducting focus group discussions in a low resource, multi-lingual, multi-ethnic South African setting. We discuss participant recruitment, response rate, focus group dynamics, and dilemmas of managing qualitative research with few resources and a lack of trained research personnel.
