Quality of life burden of autism spectrum disorder within households: The role of severity and family dynamics in urban Tanzania.

BACKGROUND

Previous research on quality of life (QoL) among families affected by autism spectrum disorder (ASD) has focused mainly on diagnosis rather than severity, overlooked how the QoL burden is distributed across household members, and rarely examined multiple dimensions of QoL. Evidence from low-income settings remains particularly limited.

OBJECTIVES

This study examined how the QoL burden associated with ASD is distributed among autistic children, parents and caregivers, and families as a whole, and to identify factors associated with QoL among affected households in urban Dar es Salaam, Tanzania.

METHODS

QoL was compared between autistic and non-autistic households, across ASD severity levels, and among children, parents/caregivers, and families using t-tests and chi-square tests. Regression analysis identified factors associated with QoL. Qualitative analysis supplemented quantitative evidence.

RESULTS

Findings show that ASD status significantly affects QoL, and autism severity is the principal driver of disparities in QoL. Households caring for children with severe ASD reported substantially lower QoL than those with moderate and mild ASD. Access to treatment services, higher educational attainment, larger household size, and higher household income were associated with improved family QoL. Children with ASD experienced functional dependence, behavioural regulation difficulties, and school exclusion; parents faced caregiving burden, employment disruption, psychological distress, and financial strain; and families reported debt accumulation, reduced intra-household resource allocation, and social isolation, exacerbated by stigma and limited community awareness.

CONCLUSION

ASD-related well-being is driven primarily by care intensity rather than diagnosis alone, with families facing interconnected social, psychological, educational, and financial challenges. Policy should prioritise affordable treatment, family-centred care, inclusive education, caregiver support, and psychosocial services.