How Can Youth Perspectives Inform Interventions to Reduce Inequality?

Margarita Alegría is the Chief of the Disparities Research Unit at Massachusetts General Hospital and a Professor in the Department of Psychiatry at Harvard Medical School. Her recent research grant, “Understanding the Experience of Majority and Minority Status through Photovoice,” pursues the question: How can youth perspectives inform the development of community interventions that aim to improve adolescent behavioral health by promoting social inclusion and mitigating social exclusion?

How did you come to the central question of your study?

Our study analyzes and addresses inequalities in behavioral health due to racial and ethnic group membership. Research has shown us that some racial and ethnic minority youth are at a higher or similar risk for behavioral health problems like depression, anxiety, and suicidality. This risk has been linked to the persistent stressors faced by minority youth, such as racial discrimination and consequent feelings of anger and hopelessness when faced with oppression.

My interest in studying disparities and the idea for the current study partly grew out of the experiences of my co-PI, Kiara Alvarez, and my own life experiences. I was raised in Puerto Rico as part of the majority population. Kiara is of Puerto Rican background and lived in the States. When I moved to the U.S. for college, I was confronted with having a minority status. That experience gave me first-hand understanding of what it feels like to be stereotyped and to face discrimination. At the same time, I also had many protective factors in my life such as a good education and social network, and a perception of a high social position.

Kiara and I are interested in understanding how having minority racial or ethnic group status in a neighborhood, compared to majority status, increases risk for negative behavioral health outcomes among adolescents. More specifically, we want to understand the mechanisms underlying these inequalities and how they play out in communities. Ultimately, we are hoping that an analysis of the joint effects of race/ethnicity and neighborhood context will provide insights into needed interventions to reduce these disparities.

What do we currently know about social inclusion and exclusion, and what might we find out?

Social inclusion/exclusion refers to the social interactions and relationships in the neighborhood context that have been shown to influence health and well-being. We hypothesize that social interactions and relationships might differ depending on a youth’s minority or majority status within a neighborhood. We want to identify if and how experiences of minority status, compared to majority status, might increase risk for negative behavioral health outcomes via their influence on social interactions and relationships in different neighborhoods.

For example, we know that social inclusion can mediate the effects of living in a depressed community. For this study, we aim to explore how feelings of social inclusion/exclusion exacerbate or mitigate behavioral health outcomes among majority and minority youth (White, Black, Latino, and Asian). We then hope to identify interventions that can increase protective factors and reducing risk factors associated with negative behavioral health in order to reduce behavioral health inequality.

Why did you decide to go with mixed-methods approach?

Based on findings from a study on which I previously worked, I was struck by the data that Puerto Ricans living in the Bronx were doing worse in terms of depression and anxiety than those living in Puerto Rico. I was perplexed that the more time people stayed in U.S. the worse they fared. We analyzed the data and found that social relationships were protective for Latinos. We also examined how discrimination left people feeling socially excluded and without a sense of belonging. Furthermore, both Asians and Latinos expressed how social position was critically important to them, but was mostly driven by social constructs, and not so much a function of education, income or occupation.

Kiara and I wanted to study these issues in a deeper way and to find something that captured the questions we had about place, culture, and social relationships. That’s why we decided to go with a mixed methods study. In our mixed methods design, qualitative research is prioritized, with quantitative data collection and analysis limited to descriptive data. We believe that this approach will allow us to identify processes and relationships between constructs that may be of relevance to other communities seeking to reduce behavioral health inequality due to racial and ethnic minority status.

We are going with a multi-stage, mixed-methods approach, in which data analysis for each aim of the project will then inform the design and analysis for the next aim. The aims of the study can be understood as distinct phases of community intervention development. In Year 1, the youth will be trained to take photographs to document what in their community they perceive as being resources and stressors, as well as their experiences of social exclusion/inclusion and discrimination and their family interactions. Participants will then be interviewed individually about their photographs and those taken by youth in another community. Youth will take two 30-45 minute surveys measuring demographic characteristics, and behavioral risk and protective factors.

In Year 2, our team will hold community forums with families, youth, service providers, and policymakers to report on the study’s results and to build a shared vision of community priorities for intervention development. In Years 2 and 3, the team will interview the informants and identify two communities for the development of an intervention.

What do we gain from a participatory approach to research?

The underlying key is to start with thinking that solutions lie in the community, not necessarily in the researchers. We are going to train youth to take photographs related to eight pre-identified themes that are representative of the studies’ aims, including neighborhood stressors, experiences of social exclusion, and experiences of social inclusion. The photovoice approach empowers the research participants to take ownership of the study results and to use the results to develop solutions to the addressed problems.

The reason that this approach is so powerful is that the youth participants will help us understand their perspectives and develop responses to challenges they face. This information, for instance, can inform the design a program in which they would be interested in participating.

I think that one of the greatest miscalculations that researchers make is the assumption that while we acquire the data, interpret the data, and write about the data, others will then take our findings and use them. Very often this is not the case. In this study, we will leverage the diverse perspectives of all stakeholders, with whom we will collaborate to develop either policy or practice responses to behavioral health disparities. We are hoping that these responses will be anchored in what the communities see as acceptable and relevant.

Community members have a wealth of information—they can interpret the findings in ways that we as researchers may not even think about. I’m hoping that by opening up a dialogue we can begin to grasp the perspectives of others and move toward collective problem solving. I think we haven’t spent enough time trying to deeply understand issues of exclusion and inclusion—that is, at the level where it translates to feelings and cognitions that affect people and prevent them from thriving.

How do you plan to analyze and integrate data from mixed methods?

We have a small sample, so numbers have to be interpreted cautiously, but we are doing a lot of analysis around the themes of exclusion/inclusion that come out of the photovoice exercise.

Narrative transcripts and ethnographic field notes will be analyzed and coded. The first level of analysis will involve open coding, a strategy which involves investigators identifying themes and concepts emerging from the transcripts and developing a codebook. The codebook will be utilized with the rest of the photos and narratives and additional relevant codes will be added if needed. Our use of ethnographic research leaves us very open to seeing things that we may not have not even considered. There’s also the issue of exchanging information across the four neighborhoods and ethnic/racial groups to see how the interpretation could vary as a way to give it depth but also to give it a more nuanced understanding of issues we have.

We will then complement the qualitative analysis with the results from individual surveys collected from youth photovoice participants. Quantitative analyses will be primarily descriptive and utilized to provide an additional perspective to the constructs under study.

To integrate the data we’re going to look for recurring patterns and themes by comparative analysis among the collected narratives and triangulate findings using descriptive quantitative data and qualitative field notes. Qualitative data will be entered into a matrix and organized by participant ID, photovoice group, and community site. A similar matrix will be created for key informant interviews.

We feel strongly that this kind of community-based mixed-methods work can be especially valuable in identifying and understanding strategies to reduce inequality, and we’re looking forward to putting it all together.

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