“How Autism impacts mothers in a selected autism centre in Karachi, Pakistan- A qualitative study”
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Background
The mothers of children with autism spectrum disorder (ASD) are more stressed than those of neurotypical or any other children with special needs. There remains a notable lack of contextually grounded evidence on the experiences of mothers raising children with autism in resource-constrained settings of a lower middle-income country (LMIC).
Methodology
A qualitative phenomenological study was carried out at a government-run autism rehabilitation center over a period of six months. The main purpose of the study was to explore the lived experiences of the mothers of autistic children in a setting like Karachi, Pakistan. Twenty-five mothers of 3-18 years old children enrolled in the selected facility participated in two focus group discussions (FGD) and seven In-depth interviews (IDIs) until data saturation was achieved. Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines and Guba’s constructs of trustworthiness were followed.
Results
Several themes were derived, corresponding to the different layers of the Ecological Systems Theory. Themes included maternal emotional journey, interpersonal relationships, societal perceptions, access to support services and adaptation over time.
Conclusion
Mothers of children with Autism in Pakistan face significant challenges at the personal, family, societal, and support systems levels. Removing misconceptions and improving access and quality of services to children with Autism and their families is essential for easing their burden.
ARTICLE SUMMARY
This study provides in-depth insight into mothers’ lived experiences in an under-researched LMIC setting.
Methodological rigor was enhanced through COREQ, triangulation, member checking, and an audit trail.
Conducting the study at a single public-sector center limits transferability. 4-Exclusion of fathers limits broader family perspectives
What is already known on the topic
The mothers of children with autism spectrum disorder (ASD) are more stressed than those of neurotypical or any other type of special needs’ children.
Socioeconomic problems, societal stigma and lack of service availability are reported as the major contributors to the caregiver strain experienced by them.
What this study adds
The study highlights key needs, barriers, and contextual realities faced by mothers of children with autism within the setting of an LMIC.
Effect on research, practice or policy
It can help greatly in managing stigma related to mental health through the perspective of the mothers. Another possible benefit can be the evidence-based formulation of policies and infrastructure required for inclusion of children with ASD into the society.
