“Pray to all four directions”: a qualitative study of syncretic care seeking by Vietnamese families for their children with autism spectrum disorder

Abstract

Purpose

The aim is to understand what therapies and interventions families in a low and middle income (LMIC) country, such as Vietnam resort to in their attempts to seek care for their children with ASD and why they choose these therapies.

Methods

We undertook semi-structured qualitative interviews with 27 parents of children with autism and an online survey of 112 parents as part of a broader ethnographic study over one year augmented with recent interactional observations and a review of social media.

Results

There is limited access to formal interventions for families with children with ASD in Vietnam. Rather, families resort to syncretic care using an average of 6.8 different interventions per child. These included: speech therapy; physical therapy; prescribed medicines; and ABA as well as geomancy, special dietary regimes, biochemical testing, stem cell therapies and religious and cultural practices. Despite having low incomes, the families surveyed spent an average USD 345 per month on interventions, many of which are not evidence-based. Desire to care and potentially “cure” their children within a context of stigma associated with ASD drives parents to seek all possible interventions for their children.

Conclusions

There remains a large gap in access to appropriate evidence-based interventions or trained therapists for families. Further information for parents, culturally appropriate guidelines for effective interventions, more trained rehabilitation professionals and regulation is required.

IMPLICATIONS FOR REHABILITATION

• Within low and middle income countries (LMIC), such as Vietnam there is a lack of intervention services, difficulties in accessing appropriate specialists, poor quality care and the costs of care.

• Families seek a range of formal interventions and costly informal therapies as well as culturally specific practices to care for their child/ren and require information on effective therapies.

• In LMIC training programs to build capacity for allied health professionals need to be implemented on the latest evidence-based therapies.

• It is important to develop culturally appropriate Vietnamese guidelines to support interventions for children with ASD.

Keywords:

• Autism spectrum disorder
• interventions
• syncretic therapies
• Vietnam
• decision-making

Acknowledgements

We also thank colleagues at the Center for Creative Initiatives in Health and Population (CCIHP), and Hanoi Club of parents of children with ASD for their support during fieldwork, Professor Maxine Whittaker and the late Professor Sylvia Rodger for their advice and inputs. Most of all, we thank the children with ASD in Hanoi and their parents for their invaluable contribution in this project. The observations and conclusions herein are those of the authors and do not represent CCIHP, the University of Queensland or the Organization for Autism Research.

Disclosure statement

The authors have no financial or non-financial conflicts of interest.

Additional information

Funding

This research received support from the Australian Government through an International Post-graduate Research Scholarship, the University of Queensland through UQadvance, and the Organization for Autism Research through Graduate Student Grants.