To raise a child with autism spectrum disorder: A qualitative, comparative study of parental experiences in the United States and Senegal

Abstract

Raising a child with Autism Spectrum Disorder (ASD) can often be a difficult and stressful process for families and caregivers. Though research on ASDs in Africa is burgeoning, very little is known about autism in francophone West Africa. Furthermore, no known ASD studies have explored parental experiences in particular from a cross-cultural perspective. This research used Interpretative Phenomenological Analysis to analyze in-depth, semi-structured interviews with seven Senegalese and seven American families to investigate parental experiences within the Senegalese community with further illustration by cross-cultural comparison. Comparative analysis of data across the two countries was undertaken to identify cultural variables previously unreported, especially those that may affect Senegalese family experience. Analysis of interviews revealed thematic differences in social and community support. Although access to effective treatment services was low among Senegalese families compared to the American families, traditional Senegalese household structures and community relations were hypothesized to serve as protective factors against the high social isolation and resulting logistical struggles reported in the U.S. sample. Further targeted research within the Senegalese environment is recommended, particularly to explore social stigma and its possible effects on families with autism, causal beliefs and treatment practices, and parental mental health and wellbeing.

Keywords: West Africa; autism spectrum disorder; culture; lived experiences; parental experiences; qualitative methods.