News and Knowledge

Traditionally, OAR publishes summaries of the applied research grants for which it has provided funding, one each month. However, this month, we are featuring a graduate study grant. In 2011, OAR awarded nine graduate awards, offering each student researcher grants of $1,000 or $2,000.

This study is unusual both because it is the first grant to a student in Australia (and the second international graduate research grant) and because Vu is studying autism spectrum disorders (ASD) in her native Vietnam.

Study

Using Participatory Action Research to Understand Autism Spectrum Disorders within the Socio-cultural Context of Vietnam

Researcher

Song Ha Vu, University of Queensland (Australia)

Why is this Study Needed?

To date, there is very little knowledge on ASD in Vietnam. The country has no official statistics on this condition, and the prevalence of autism in Vietnam has not yet been investigated (CLAN 2010). Only a few studies on this condition have been carried out and they focus on clinical perspectives. There is no study exploring the lived experience of children with ASD and their families. However, narratives and personal opinions posted in media and forums reveal that these children and their families have desperately struggled with the diagnosis process and intervention services, experienced stigma and discrimination.

Purpose

This study seeks to begin to address this gap by using participatory action research in Hanoi, Vietnam from July 2011 to December 2012. Vu aims to gain an understanding of the lived experience of young people with ASD and their parents in Vietnam and to test the usefulness of a visual method, “photovoice,” in engaging these people in communication about their experience.

Study Methodology In Brief

About six to 10 teenagers and young adults with ASD and 10 parents will be invited to participate in “photovoice” activities. Photovoice is a process by which people can identify, represent, and enhance their community through a specific photographic technique. In addition, the researchers will also conduct in-depth interviews with a further 20 to 30 parents and approximately 10 key informants.

The researchers will employ participatory observation and life history to gain a better understanding on socio-cultural construction of ASD in Vietnam. Photographs, interview transcriptions, and notes of participatory observations will be thematically analyzed.

The main outcome of this research will be Vu’s doctoral dissertation, which will include a description of the process and lessons learned in using the photovoice technique with this group; chapters on the experience of living with ASD, including getting a diagnosis and coping with this condition; and a description of the challenges in response to ASD in the context of a low-resource country.

This study will be unique as the first of its kind in Vietnam. Vu’s goal is to raise awareness of this condition and provide evidence for health providers and policy makers in Vietnam to better respond to the needs of children with ASD and their parents. In addition, this study will offer data on the innovative trial of visual participatory methods to work with young people with ASD and will contribute to the literature on ASD in developing countries. Apart from its relevance to Vietnam, this study will help service providers in multi-cultural societies such as the United States to be more culturally sensitive when providing services for individuals with ASD and their families.

Researcher

Song Ha Vu obtained a medical degree at Hanoi Medical University in 1995 and a master’s of public health at Columbia University in 2002. She is currently enrolled in a doctoral program at the School of Population Heath, The University of Queensland, Australia. She has been involved in a number of research and intervention projects with marginalized communities, for example, people living with HIV/AIDS, gender-based violence survivors, and young people.