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.

Leisure, employment, community participation and quality of life in caregivers of autistic children: A scoping review

“…Qualitative research exploring the broad impact of parenting autistic children found caregivers commonly report reduced autonomy, with their daily tasks and needs structured around the child (e.g. Cardon & Marshall, 2021; Joosten & Safe, 2014; Kim et al, 2018). When interviewed, mothers and fathers of school-aged autistic children felt restricted in their personal, social and professional functioning with less time for their own hobbies, interests and friends due to increased time spent in caregiving-related tasks (Dieleman et al, 2018).…”

Depression and parental distress among caregivers of autistic children: a serial mediator analysis in caregivers of autistic children

“…Studies based on a population sample do not show a direct relationship between autism severity and parental stress [ 46 , 47 ]. In addition, it has been shown that parental cognition can increase parental mental health problems by mediating between the child’s symptom severity and parental mental health problems [ 48 ]. Since the sample’s age range in the study was 6–11 years, it was thought that the result was compatible with the literature.…”

‘I asked myself why I was having this difficult child’: Care Burden Experiences of Black African Mothers Raising A Child with Autistic Spectrum Disorder

“…In South Africa [23], like many other low-middle-income countries [24], services specifically designed for children with ASD are not readily available in the public sector, which may impose additional strain on mothers. Although the healthcare service needs of children with ASD may be similar across the world, the nature of the resources needed by African children and the availability of supportive resources to African families are comparably different in high-income countries [25]. Thus, South African mothers of children with ASD are expected to experience greater caregiving burdens.…”