Challenges and unmet needs of mothers of preschool children with autism spectrum disorders in Tunisia: a qualitative study

Abstract

Introduction Autism spectrum disorder (ASD) is a life-changing condition, not only for the child but also for the mother and the usual caregiver. In fact, a child recently diagnosed with ASD is a real challenge to mothers´ adaptation, involves their resources, and gives rise to a set of needs. This study explores the unmet needs and experiences of mothers of ASD children in the Tunisian context. Methods a qualitative phenomenological design was chosen for this study and a semi-structured interview was used for eight mothers raising an autistic preschooler child. Results the results indicate significant denial and rejection following the announcement of the diagnosis. To cope with this, reliance on religion has helped foster acceptance. Although informal support (from family and friends) has sometimes been mentioned, an increased need for training, social and financial support has been expressed and is a major concern given the high cost of TSA services. Conclusion this study provides a deeper understanding of mothers' needs following the announcement of the diagnosis of ASD. These unmet needs should be taken into account when designing interventions strategies for children with ASD to help mothers cope and parent a child with ASD.

A bibliometric analysis of autism spectrum disorder signaling pathways research in the past decade

“…These studies concentrate on various aspects of ASD in Tunisia, thoroughly investigating and analyzing multiple dimensions, including biology, cognition, psychosocial factors, and immunology. The research explores the impact of gut microbiota ( 59 ) and genomic variations ( 60 ) on patients, elucidating challenges in cognitive abilities ( 61 ), emotional recognition ( 62 ), and familial issues ( 63 ). Furthermore, investigations into immunological characteristics contribute to comprehending the pathological mechanisms of autism ( 64 ).…”

Effectiveness of a training program among parents of preschool children with ASD in Tunisia: a randomized controlled trial

“…In this study, a cut-off score of 11 points was employed to indicate the presence of ASD risk (Wiggins et al, 2015). Description of the parent-training program named "Parents in action: Blue Hope" (Abid et al, 2022;Dawson-Squibb et al, 2020;Karst and Van Hecke, 2012). The Blue Hope program is based on the transmission of information and skills to parents in a context where parents/careers and trained facilitators are the direct actors.…”

“…The Blue Hope program is based on the transmission of information and skills to parents in a context where parents/careers and trained facilitators are the direct actors. The program was designed based on a qualitative study that identified the unmet needs and challenges of parents of children with ASD in a Tunisian context (Abid et al, 2022). It was delivered using a range of modalities, including interactive training activities, group discussion, video examples, role-play with therapists, handouts, and regular homework assignments (Dawson-Squibb et al, 2020).…”

“…Systematic barriers impact the experience of families of children with ASD, including limited personnel, limited health coverage/financial resources, schedule conflicts, lack of child/respite care, and lower health literacy rates (Chlebowski et al, 2018;Moody et al, 2019). Persons with ASD in Tunisia are faced with a lack of structures and human resources, limited knowledge about ASD, and of effective educational approaches, which are often costly and cannot be adopted with a low-income country like Tunisia (Abid et al, 2022). Cultural and linguistic aspects can also be a barrier: Unlike in North American or European cultures, Tunisians, speaking primarily Arabic, are less prone to express their emotions.…”

“…Therefore, there is a need for mental health providers and specialists who are providing services and education for children with ASD to try and discover new approaches based on parent as a partner in caring adequately his child through training intervention and to develop evidence-based interventions (Abid et al, 2022;Alqatarneh et al, 2022).…”