Changemaker Catalyst Award recipient Amrita Gill traveled to Pune, India to generate evidence for the application of a modified life storyboard approach as a tool for qualitative data collection and empowering participants in the research process. Amrita Gill is a fourth doctoral candidate in the Department of Social, Behavioral, and Populations Sciences at Tulane School of Public Health and Tropical Medicine.

 

Amrita Gill, Tulane Fogarty Global Health Fellow

In March 2020, I was awarded the Fogarty Global Health Fellowship to complete my dissertation research examining violence and substance use among adolescents living with HIV in India. The research activities were to be conducted at Byramjee Jeejeebhoy Medical College (BJMC) Sasson hospital, Pune, India. A sequential multi-method approach was proposed, with a qualitative phase preceding the quantitative phase. We utilized a minority stress framework to understand youth experiences of violence and substance use. The theory posits that minoritized individuals experience various stressors within their social environment related to minoritized identity known as distal stressors.¹ Violence and discrimination are examples of distal minority stressors that may impact health directly or indirectly through proximal stressors. Proximal stressors may originate from identification with a minoritized identity and are often related to the perception of one as a devalued entity.¹

While the theoretical aspects of the research seemed to be well developed, the implementation was a challenge. I remained cautious but optimistic about my aspiration to set up my research at a Johns Hopkins University site in India. This was an opportunity to not only learn about the rich culture of the Marathi-speaking state of Maharashtra but also of another US university. The realization of an altered global health research experience due to the impact of the COVID-19 pandemic made me cautious in my endeavors. Not only did travel restrictions limit the mobility of global health researchers but the fear of catching the virus also affected the recruitment of participants. Nevertheless, one year into the COVID-19 pandemic my first study participant was recruited, a 15-year-old boy and a victim of physical abuse at home. It was my first time working with children living with HIV and some of the experiences reported were harrowing. For example, the 15-year-old boy reported, being beaten by his father who was also an alcoholic on various occasions,

“Pappa (father) used to lock us when he came home drunk. Pappa (father) would hit us when he was drunk. When he was drunk then he would lock me and when he was not drunk he would allow me to go out. Sometimes once in a week or so.”

He also experienced bullying because of his father’s behavior,

“Because pappa used to hit and use bad language about others (swear words), so they teased us about our pappa.”

While piloting my interviews the difficulty of engaging children in distress became apparent. Not only were they struggling to accept living with a life-threatening disease but also experienced multiple forms of violence at home and in neighborhoods. We sought to obtain feedback from the community advisory board at BJMC- Sassoon hospital regarding the research process and how to connect distressed children with social services. They encouraged me to include innovative approaches for improved participation by the study participants. Earlier implementation research with underprivileged youth indicated the success of the use of vignettes. Community partners were also instrumental in informing the participants about the study and enrolling them. Most of the study participants were mobilized from the peer-led antiretroviral (ART) clinics which are also the link ART centers to Sassoon hospital. One key learning has been in forging partnerships with community stakeholders. We have constituted a community advisory board for the research which has been instrumental in informing the research activities, such as validating the in-depth interview guide and suggesting themes to be included in the research and connecting children with services that they may urgently need.

Figure 1

 Peer-led ART centers were utilized for the recruitment of study participants

Figure 2

Community advisory board meeting to obtain feedback regarding the study proposal. The meeting was hosted by the BJMC-JHU research site in Pune, India, and attended by partners for the research activities: Network of Maharashtra by People living with HIV (NMP+), Prayas a non-governmental agency working in youth health.

Considering the findings from the early interviews and feedback from various partners, our research design was revised for an improved understanding of the home environment, to reduce distress during interviews, and to improve participation by underprivileged youth. Our research objectives were expanded to also obtain parental reports youth environment for an improved contextual understanding of youth experiences of violence. We not only examined concordance and discordance between parental and youth reports of violence but also the child’s socialization to accept living with HIV.

Since most of the study participants were perinatally infected, medication adherence and other HIV-related proximal stressors such as concealment of HIV status were heavily modeled on parental behaviors. We also recognized the importance of participatory approaches to gathering high-quality data from vulnerable populations. Taylor center change making grant supported the expansion of research activities for a more inclusive research design. We utilized the life storyboard method (LSB) and picture codes (vignettes on violence and substance use experiences) to provide our research participants the opportunity for greater articulation of their life experiences. We explored the therapeutic value of the LSB and learned that it is highly effective in the visualization of life events, identification of strengths and weaknesses in the youth environment, and therapeutic as a means of catharsis. In Figure 3, the 15-year-old girl narrated the key incidents in her life including vision impairment due to non-adherence to ART medication which resulted in bullying utilizing the life board.

 

Figure 3: Life storyboard developed by a 16-year-old girl living with HIV, the board includes a timeline, individual-level factors, and a neighborhood map:

The life storyboard² is an excellent tool to help understand the youth environment and coupled with picture code (vignettes) provides detailed accounts of vicarious experiences of violence.     A total of 30 in-depth interviews have been implemented with the help of two research assistants.

Figure 4: Research assistant interacting with study participant

My experience with participatory qualitative research with underprivileged youth has been a rewarding first small step towards becoming a global health researcher in this field. I wan

References

1. Espelage DL. Ecological theory: Preventing youth bullying, aggression, and victimization. Theory into Practice 2014;53(4):257-64.
2. Meyer IH, Frost DM. Minority stress and the health of sexual minorities. Handbook of psychology and sexual orientation. New York, NY, US: Oxford University Press 2013:252-66.