“What I wish my doctor knew about my life”: Using photovoice with immigrant Latino adolescents to explore barriers to healthcare

Abstract

Background

Latinos in the USA have reported more frequent discriminatory treatment in healthcare settings when compared to their White counterparts. In particular, foreign-born Latinos report discrimination more than Latinos born in the USA. Such patient-reported racial/ethnic discrimination appears to contribute to specific health consequences, including treatment seeking delays, interruptions in care, and medical mistrust. Immigrant Latino adolescents in the USA experience a variety of health disparities, yet little is known about their views of the healthcare experience, their perceptions of discriminatory treatment, or ways in which they would like their relationships with healthcare providers to be different.

Methods

This work, based in a larger interdisciplinary social work-led initiative, used photovoice with two groups of immigrant Latino adolescents to explore the topic “what I wish the doctor knew about my life.” The findings were used to engage healthcare stakeholders as part of a pilot intervention aimed at decreasing provider bias toward immigrant Latino youth.

Results/Discussion

Findings illuminated ways that the immigrant experience affects the lives and health of Latino adolescents in North Carolina. To improve their health, it is critical to understand, from their perspectives, the ways their lives can be complicated by experiences of migration, stereotypes, and cross-cultural communication challenges and how their interactions with authority figures in one sector, such as education, influence interactions in health care. Understanding the healthcare barriers faced by immigrant Latino youth is critical to any effort to improve the system of care for immigrant Latino populations.

Keywords

Latino photovoice adolescents immigrants health

Introduction

The Institute of Medicine’s Unequal Treatment report (2003) concluded that healthcare providers’ treatment decisions and attitudes toward patients can be shaped by patients’ race/ethnicity, contributing to disparities across healthcare systems and disease categories (Smedley et al., 2003). Patient-reported racial/ethnic discrimination appears to contribute to specific health consequences, including elevated pain levels, poor treatment adherence, delayed help-seeking, interruptions in care, and medical mistrust (Shavers et al., 2012). Latinos in the USA report more frequent discriminatory treatment as compared with their White counterparts, with foreign-born Latinos reporting more discrimination than US-born Latinos (Shavers et al., 2012).

For immigrant Latino adolescents, healthcare barriers affect health consequences throughout the life course. Health behaviors initiated during adolescence, such as sexual experimentation and substance use, can have ramifications for health and well-being well into adulthood. When identified and treated early, conditions such as adolescent overweight/obesity and mental health issues can be kept from progressing to chronic health problems (Hall and Rounds, 2012). As compared with their White counterparts, Latino youth are less likely to have a usual source of care or preventive care visits but more likely to delay care (Langellier et al., 2014).

These healthcare barriers are particularly troubling for immigrant Latinos in a new destination state such as North Carolina (NC)—one of 14 states where the foreign-born population grew at or above twice the national rate between 2000 and 2009 (Terrazas, 2011). Between 1990 and 2010, NC experienced 788% growth in the Latino population (State Center for Health Statistics and Office of Minority Health and Health Disparities, 2010). Similar to Latinos throughout the USA, Latinos in NC are less likely than other groups to have health insurance. In 2011, 43% of Latinos in NC were uninsured (18% US-born, 71% foreign-born) (Pew Research Center, 2011). Additionally, as a new destination state, NC healthcare systems and public services have minimal experience working with immigrant populations. Few providers in NC have immigrant backgrounds, further widening the gap between providers’ experience and Latino youths’ needs (Ortega et al., 2007). For undocumented residents, these barriers are compounded by fear and mistrust of authority figures, including healthcare providers, due to concerns about immigration enforcement (Rhodes et al., 2015).

Few studies have focused on immigrant Latino youths’ perspectives on US healthcare or the complicated ways in which interactions in one service system, such as education, may shape experiences in others, such as healthcare (Corona et al., 2009; Larson and McQuiston, 2008; Raymond-Flesch et al., 2014; Wilson et al., 2000). For social workers who often work in host settings such as healthcare delivery settings and schools, understanding these connections may enhance advocacy efforts on behalf of clients and contribute to more effective engagement. This article focuses on a study that used the qualitative research methodology photovoice (Catalani and Minkler, 2010; Wang and Burris, 2007) with immigrant Latino adolescents in NC to explore the topic, “What I wish my doctor knew about my life.” Using a community-based participatory research (CBPR) approach (Israel et al., 1998), the study was conducted by a community–academic research partnership as part of a larger social work-led project focused on improving doctor–patient relationships for immigrant Latino youth.

Methods

Photovoice methodology

The research team consisted of two English-speaking researchers (one White, one Chinese American) with expertise in CBPR and photovoice; a White research assistant who was a Spanish-speaking Masters of public health student; two Latina public health doctoral students; and a foreign-born Latina from a Latino-serving community organization, all three of whom were fluent in Spanish. Over the course of nine weeks, our research team met with two groups of immigrant Latino adolescents (N = 13; ages 14–18 years) to explore barriers to healthcare. In the photovoice process, participants use cameras to explore community issues and experiences, and then engage in group discussion of the images using a structured, facilitated dialogue process called SHOWED (VENCER in Spanish) (Baquero et al., 2014; Wallerstein, 1994). SHOWED is a discussion technique that draws on the empowerment and consciousness-raising approach of Freire (2000) to guide discussion of a “trigger” photo taken and selected by photovoice participants. The goal of the SHOWED process is to move the discussion from individual observation to group interpretation, triggering emotion and connection to the issue at hand, critique, and finally new collective understanding geared towards action. Photovoice culminates in a forum where participants present findings to influential advocates and engage them in generating action steps for change (Baquero et al., 2014; Woods-Jaeger et al., 2013).

Participants

Drawing from two community-serving organizations in two NC counties, we recruited 13 youth (a typical photovoice sample size) (Catalani and Minkler, 2010). We worked with a Latina coordinator from each organization who was familiar to the youth and trusted by their families to reach out to them and identify potential youth participants. Group 1 participants (four males) were recruited through an after-school teen reproductive health program. Group 2 participants (three males/six females) were recruited from youth programs sponsored by a Latino-serving advocacy organization. Study eligibility was determined by self-identification as an immigrant Latino, parent/guardian consent, and availability to attend all sessions. During the recruitment process, we did not ask youth to discuss their documentation status. Latino youth and adults are often stigmatized because of their association with undocumented migration regardless of their actual documentation status (Viruell-Fuentes et al., 2012). With the exception of one youth, all were from Latin American countries in the Western hemisphere. At the time of immigration to the USA, the youth ranged in age from 1 to 13 years. Approximate length of time in the USA ranged from 3 to 14 years, with the majority having lived in the USA longer than five years. All were comfortable speaking in English and, when given the choice of language for our photo discussions, the youth decided to use English, but Spanish-speaking research team members were always present for those who wanted to clarify ideas in Spanish.

Procedures

The study protocol was approved by the University of North Carolina at Chapel Hill Institutional Review Board. To launch the project, the research team held a 2-h orientation at each recruitment site to provide information to potential participants and their parents, and obtain informed consent (parents) and assent (youth). The consent process was carried out in English with the youth and in Spanish with the parents. Once consent and assent were obtained, the research team met with youth participants only to introduce the photovoice process and demonstrate the photovoice SHOWED dialogue method (Baquero et al., 2014; Wallerstein, 1994; Woods-Jaeger et al., 2013). Once they understood SHOWED, each group generated a list of possible photo assignments related to the topic “What I wish my doctor knew about my life,” and then chose one assignment for the first week by consensus. Each subsequent week, the groups reviewed their original list of photo assignments, considered the options, and either selected from the list or generated a new assignment, thereby enabling the youth to co-direct the course of the research. Participants received a $10 incentive after each session attended.

Group 1 agreed on the following four photo-assignments: how my heritage affects my health; how crossing the border affects my health; how my education affects my life; and how the challenge of paying for health-related things affects me. Group 2 selected what I do every day; my life before I or my family came to the USA; my life right after I arrived here; and how my gender affects how I relate to the doctor.

Youth were lent digital cameras to complete their photo assignments and both groups met for four photo discussion sessions. At each of these, each youth shared up to three photos and described how the images represented the assignment. From the images discussed, each group selected by consensus one “trigger” image that they thought best represented the photo assignment. The aesthetics of the images were less important in the selection process than the story it conveyed and its resonance for the participants as a whole. Research team members then facilitated a discussion of the trigger image using the SHOWED process. Each discussion was audio recorded and transcribed verbatim and these transcripts were the focus of the qualitative analysis process.

Analysis

ATLAS ti 7.5 was used to manage data. Research team members read transcripts, took notes on initial impressions, and created a preliminary code book. To reinforce the youths’ role in the research process, we shared uncoded transcripts with them so they could review, concur or propose new codes. The research team then generated initial themes based on the refined codes. The team then brought both groups together to review all the photos and member-check the themes. This iterative process was continued over three meetings to finalize the themes in collaboration with our youth partners and select photos to accompany the four themes generated through the analysis and member-checking process. Last, we organized forums to share themes and photos with relevant stakeholders, discuss implications of the findings, and strategize potential action steps.

Findings

Although this study began with the goal of understanding immigrant Latino youths’ experiences in healthcare environments, the participants described experiences in many life domains. Some experiences had a direct relationship to health, whereas other experiences were outside the healthcare context but shaped immigrant Latinos’ interactions with providers.

As evidenced by the youths’ selection of photo assignments, migration profoundly influenced their lives and they explored this pivotal experience and its impacts on immigrant youth in multiple ways through their photos. For example, one youth took a photo of a cross in reference to lives lost attempting to cross the border. Another chose a chain link fence to symbolize the literal and figurative walls immigrants have to climb to make their way to and in the USA. A third photographed the dirt outside his home to symbolize the perilous journey through the desert made by some immigrants. Another staged a girl walking a bramble-covered path, carrying her belongings on her back; the path is sunny and green, but the destination is obscured. She described the immigrant experience: “You … carry what you have … what you can just take with you and like, it’s an unknown path … you don’t know … I didn’t know what I was expecting.” Though they took many paths to NC and at varied ages, the migration experience and navigating life in the USA served as a unifying lens for our participants. The four themes described below and accompanying photos selected by the youth draw attention to shared challenges experienced by immigrant Latino adolescents and potential leverage points for improving interactions in healthcare and other service delivery systems.

Theme 1: The importance of our relationships with doctors

It’s hard to develop good relationships with doctors because they don’t seem to care about who we are as Latino/Latina youth, don’t want to know and don’t know how to ask about the experiences that have shaped us or about what affects our daily lives.

The image of a closed door shown in Figure 1 was taken by a 16-year-old Latina to symbolize how doctor–adolescent relationships can either open possibilities for collaborative care or shut down opportunities for treatment. The image evoked emotional responses in which youth described feeling judged in verbal and non-verbal ways in their interactions with physicians. One male explained physicians communicated judgement by “the looks … their posture.” A Latina described how judgmental responses closed the door on conversations meant to facilitate diagnosis and treatment: “But, you say something and then, they judge you. So you don’t want to have to say anything … And then they’re missing important information about me.” Another Latina reported feeling doctors made assumptions about Latino youth that crossed into negating and refuting the youths’ words, leaving no room for individuals to express their perspectives or share their experiences: “I feel like when they judge you … they try to go the opposite of what you’re trying to tell them … ’cause of this and that, and they try to be right about things.”

Figure 1.

Closed door.

Figure 2.

Police car.

Figure 3.

Boy with red truck.

Figure 4.

Hand over woman's mouth.

Another mismatch between youths’ perceptions and realities involved medical costs. One Latina stated doctors seemed eager to prescribe “medicines you don’t need,” and elaborated saying

They don’t take into consideration your economic status … I just went for my physical, and then, on top of my physical, he was like, “Oh you need a shot for this, and you need …” and like, “the flu’s coming on, so you need the pills” and “you’re gonna [need] …” I just went to get my physical … and it ended up like $200 for that one day.

The effect of medical costs on youth health and relationships with providers was represented in one youth’s photo depicting a woman with her hand at her brow fretting about her medical bill. One youth commented, “I actually have never been to the [hospital], but I have seen people like, struggle through paying the bills.” Participants wished alternatives were available to relieve the financial burden on their families. Healthcare costs are particularly salient, youth told us, for undocumented residents, who are prohibited by immigration laws from accessing public health insurance. A photograph of a youth’s paystub prompted conversation about paying into Medicare and Medicaid without being able to access these benefits, highlighting the frustrations faced by undocumented immigrants and the limitations and complexity of their status in the USA.

A Latino youth explained how healthcare “sticker-shock” molded his mother’s decision to forego recommended treatment for her diabetes

And she sat in a [hospital] room for a couple hours and then, the bill was like … $600. And it was like, ‘What!’ … She didn’t want to go back.” Another male related how his mother reacted to cost, “‘Cause, like if it is expensive, I know … my mom will say …, ‘No, I can control that, it’s gonna go away, I don’t want to pay … that much money, just to get … a check-up.’

Overall, participants universally shared concerns about healthcare costs, feeling judged by providers, and feeling excluded from choices about their care, all of which negatively affected their interactions with healthcare systems. Non-adherence to medical regimens that could be seen by providers as an expression of an assumed cultural characteristic, such as fatalism (Abraído-Lanza et al., 2007; De Los Monteros and Gallo, 2011), could in fact have little to do with Latino culture and everything to do with healthcare policy barriers such as those described by our youth participants.

Theme 2: The impact of stereotypes

By their own ignorance about us, people in authority view us through a suspicious lens, assume we are up to no good, and expect us to fail.

Although not asked about their relationship with other authority figures, the youth brought up interactions with teachers, law enforcement, and others, thus demonstrating the degree to which these young people transfer experiences with one set of authority figures to another. Specifically, stereotyping by adult authority figures with whom the youth routinely interact was a recurring concern. Participants described being seen by adults through a lens of negative expectations, whether in brief one-time encounters (e.g. an emergency room physician) or daily encounters with authority figures (e.g. school staff). Study participants described these adults as apparently unaware of their stereotyping behavior and unable to see past stereotypes to discover Latino youths as individuals with diverse life experiences. Encountering (and choosing when to confront) stereotypes was a constant source of stress for these youth, with ramifications for multiple settings. Youth described how stereotyping in one setting (e.g. school) undermined their trust in adults in helping roles in other settings (e.g. healthcare).

One male participant captured the image of a police car to depict how his Latino heritage affects his health. He explained, “You always have that, like, sense in the back of your head, like, ‘[The police officer] could try to go for me instead of that [other] dude.’… over a while, it could accumulate … You could be in fear.” Throughout the discussions, participants described the burden of surveillance, suspicion, and stereotyping as well as the potential effects of these stressors on their physical and mental well-being.

Specific to healthcare, youth described how sexual stereotypes of macho Latino men and promiscuous Latinas led physicians to act on the assumption that all Latino youth are sexually active. One Latina commented on the pervasiveness of this assumption: “They assume it, right away … if they see like a Latino … they think, ‘Oh, she’s already having sex or he’s already having sex.’” Another Latina described an uncomfortable interaction with an emergency room physician who assumed the girl was sexually active:

When I went to the ER, he asked me, um, if I was having [sex] and it was a man [doctor]. I’ve had it [similar assumption] with a woman too. They always ask … and it was awkward because he was trying to make me, like, feel like I was sexually active. I’m like, ‘I’m telling you no. It’s no.’ So he made me feel like I was [lying], even though I wasn’t … .

Similarly, despite a male youth’s protestations that he was not sexually active, the provider pressed the boy to accept condoms. Several Latina participants described providers pressuring them to take a pregnancy test despite repeatedly stating there was no possibility she was pregnant.

When asked what healthcare providers could do to address this situation, one Latina said, “They could ask, like, ‘Do you want to talk about it [sex]?’ Not like, assume that [you] want to talk about it.” Another participant offered, “Or just believe you the first time.” These adolescents want to be seen and treated as individuals first, not lumped into a category associated with risky, dangerous behaviors. Fundamentally, these youth want adults to ask about, not assume, the particulars of their lives and then to be believed by adults when they provide information about themselves.

Theme 3: Responsibility without power

Our families have sacrificed to provide us with opportunities, but barriers and policies deny them their parental power and we find ourselves having to play the adult role and advocate for ourselves in school, work, and in life.

The photo of a young boy, alone in a parking lot with no parents to watch over him or help him navigate the puddles and cars, captured for the group the sense of isolation, helplessness and loss of identity they felt in coming to the USA as well as the upending of the parent–child relationship brought about by the immigration experience. Paradoxically, although immigrant Latino youth felt unheard, their families often relied upon them to be a spokesperson within the healthcare system. This responsibility was stressful in itself, but participants also said they needed to talk with providers about the other factors that cause immigrant youth stress, including school-related concerns. Regardless of the cause of their stress (e.g. pressure to achieve, social isolation, immersion in a different culture with a new language, or serving as their family’s interpreter), these youth made explicit connections between stress and physical and mental health.

Youth discussed feeling great pressure to meet their own expectations as well as the expectations of their families, particularly regarding education. A male participant said, “Your family’s sacrificed for you to come to [US], for this education.” In addition to the weight of family sacrifices and the pressure to succeed in school, youth noted the complications of contending with an unfamiliar educational system in a language they were still trying to learn. One male stated:

My parents, like my Mom, feels like she paid a lot of money … for me to come here, and she doesn’t want me to mess that up … So she feels like I have to make her proud. So,… that’s how I feel … but sometimes I feel like I’m, I’m not even doing that … when you’re, like, growing up, like, not knowing the English, just like learning it, and like, having to learn, everything, all over again.

For this Latino teen, the stressors of adapting to a new environment compounded the pressure he felt to make his parents proud and to be worthy of his family’s sacrifices. For most participants, family imbued a significant feeling of responsibility to make use of the opportunities afforded them by coming to the USA.

This desire to succeed was not without complications. They pointed to barriers in the school system such as language, residency, and legal status that make it difficult for immigrant Latino youth to succeed and also pose obstacles to parents’ access and involvement in their children’s schools. For example, a participant discussed how policy requiring formal background checks for parents wishing to accompany field trips or volunteer in the classroom prevented undocumented parents from participating in school activities. One Latina recounted that in her country of origin, she benefited from her mother’s participation in school activities and her close relationships with educators and other parents. After immigration, her mother felt disconnected from her daughter’s school: “The one thing my mom hates the most is the communication. She was just so far away from everything that was going on in my school that she has no idea what’s going on sometimes.” This participant continued, describing both language and cultural barriers to her mother’s involvement, including her mother’s perception that US teachers do not try to know students in the same way as teachers in Colombia.

The isolating effects of these barriers keep immigrant Latino parents from actively engaging in the lives of their children, leaving youth to serve as their own advocates. One Latina expressed her frustration, saying, “When I was younger, it pissed me off, ‘cause I’m, like, ‘Uh, why do I have to take care of it? You’re my Mom … I feel like my own Mom’.” In short, immigrant Latino youth recognized a double bind with policies necessitating they assume adult responsibilities without the power to negotiate with adults in authority.

Theme 4: Language is more than just words

Spanish is an important part of our different cultures and roots, yet our language is often used as a weapon to stereotype Latinos, isolate parents from their children’s lives, blame teens, and disrupt family dynamics. So, interpretation alone is not enough to solve communication barriers.

Our conversations with immigrant Latino youth highlighted the complex, nuanced ways that language and culture are embedded in every theme. This final theme was particularly important to the youth, and we struggled with them to articulate the complexity they wanted to convey. The youth were keenly aware of how language and culture are intertwined with power (who has it and who does not; whose voices are heard and whose are silenced). The image of male hands covering the mouth of a woman’s mouth captured this dynamic described by a Latina participant, “Cause I think that language is also, like, power … give you power, and we don’t, and when you, like, lose your voice, then you don’t have the power.”

Participants talked extensively about the complexities of navigating language and cultural barriers and shifting power dynamics as new immigrants and the consequences for their mental and physical well-being. Youth described being isolated because of language when they first arrived in the US and attempted interactions with peers or adults (e.g. teachers, doctors). One Latina commented:

When I got here, I was … isolated for a long time … I felt really sad because I had certain problems, like, with my health when I came … When I was in appointments … my Mom didn’t speak English and I did a little bit [but] the doctors thought that I did [spoke English] completely. Sometimes they used to explain things to me and I’m, like, ‘Oh yeah,’ but I was like, ‘What? What are you saying?’ … And my mom was like, ‘What did he say? Or she said?’ And I’m like, ‘Uhhh …’ So I didn’t know, right?

Not only did this participant have difficulty understanding the doctor, but her mother was relying on her to serve as the bridge in the patient–provider interaction. Despite seeking care, the absence of an interpreter meant this young Latina’s health needs were not adequately addressed.

Conversely, participants frequently noted how powerful they felt when they were able to express themselves in English. A participant described this feeling of empowerment:

I learned how to speak English and communicate, and I felt powerful because I knew I could do whatever I want, because I can make people listen to what I have to say and I have control over what I needed. People listened to what I needed, to what I thought, and everything.

For this participant and other immigrant Latino youth, the ability to communicate and be understood was liberating largely because they could advocate for themselves.

For many, developing English proficiency was difficult, and youth spoke about judgments and vulnerabilities they experienced. For example, adolescents discussed feeling particularly judged by school peers because of their accents. One participant indicated she often felt judged by others: “When you just don’t fit in, people look at you weird. I don’t know, how like … people make jokes about it all the time … by how they speak, or their accent or stuff like that.”

Although all participants felt judged because of their accents, their coping strategies varied from self-deprecation to self-acceptance to ignoring non-supportive comments. One Latina stated that she went along with jokes about her accent, explaining, “Why would I get upset over something if I know I have it [an accent]? Might as well laugh at it.” Similarly, another youth accepted her accent as a part of her identity, stating, “I don’t see my accent going away any time soon.” Although some youth were able to find self-acceptance, positive coping was more challenging for others. Notably, participants universally said such judgments distanced them from the larger school culture.

Ensuring the availability of interpreters is a strategy used in education and the healthcare system to help overcome communication barriers. However, participants described interpreters as a potential source of misunderstanding. Many participants noted school interpreters were rarely native-Spanish speakers and often provided imprecise interpretation during meetings between parents and educators. One youth stated, “It’s the translators … once you let a translator speak for you, that’s how you become a felon to a school … when that translator starts telling what happened.” He then recounted a meeting with his mother, a school administrator, and a school-provided interpreter. During the meeting, the interpreter minimized the administrator’s comments about seeing improvements in the boy’s attendance by telling the mother that her son was still missing a significant number of classes. When the youth challenged the imprecise interpretation, he was harshly criticized for challenging the professional: “They were like … ‘She’s a professional,’ I’m like, ‘Well, if she’s a professional, why isn’t she doing it [interpreting] right?’” Although he preferred to do his own interpretation, he said educators rarely trusted him to do so, thereby effectively silencing his self-advocacy. These challenges exacerbate feelings of powerlessness and discrimination for immigrant Latino youth and reinforce a sense of isolation from mainstream American institutions. Although not a healthcare encounter, these interactions with authority figures appear to condition Latino youth to be wary in all settings.

Stakeholder forum

The final step in this process—holding a forum to share photovoice findings with influential advocates—was an empowering experience for the youth. Our initial goal was to hold one forum with healthcare providers, the focus of the study. However, given the transferability of the findings, we organized a second forum with educators. Prior to each forum, youth made choices with the research team about how to structure the event, what images to share and quotations to read, and practiced facilitating discussion.

To prompt discussion among forum attendees (medical residents, hospital administrators at one; representatives from the School Board, schools, the health department and youth-serving agencies at the second), youth and research team members co-facilitated SHOWED discussions using the photos included here. In the discussion groups, the youth–adult exchanges were rich and varied. Some groups spent time in question/answer sessions, with adults asking youth for suggestions on how to better relate to Latino adolescents. Others pondered the differences between the lived experiences of the youth and non-immigrant adults who voiced appreciation for the youths’ perspectives on barriers affecting their lives and health. One of the groups, prompted by the youths’ insights and questions, discussed the importance of providers understanding the policy-making processes of hospitals and the healthcare system so they could work to change policies that disenfranchise Latino patients. Another group at the educators’ forum, which included the chair of the local school board, discussed the policy requiring background checks that effectively eliminates undocumented parents from participating in their children’s educational experience, an issue the school board chair had never considered.

Forum discussions enabled attendees to reflect on healthcare and education barriers faced by immigrant Latino adolescents. The healthcare forum generated short- and long-term strategies to improve health and healthcare for immigrant Latino adolescents, including revising hospital volunteer forms and applications for a youth shadowing program that required Social Security numbers, displaying the youths’ photographs and text in the campus art museum, and planning for installing project photographs and quotes in a new adolescent medicine clinic building in order to make that facility more welcoming to Latino patients and to counter Latino stereotypes among providers, staff, and other patients.

The educators’ forum raised critical awareness of salient issues from the perspective of immigrant Latino youth, such as stereotyping and discrimination that affect their relationships with teachers and administrators and policy barriers that impact their families’ involvement in schools. Activated by this experience, our youth partners continue to seek opportunities to share these findings locally and nationally and draw wider attention to the individual and structural barriers faced by immigrant Latino youth.

Discussion

Overall, this work gives providers from multiple professions critical information and crucial insight on the interpersonal and structural barriers that impact Latinos’ access to and receipt of quality healthcare. In healthcare settings, social workers function as “boundary spanners” (Oliver, 2013), individuals who bring new information into and take information out to other systems. The findings in this study speak directly to social workers working in healthcare, education, as well as juvenile justice, and mental health settings where relationship development is critical for positive outcomes.

These youth tell us that factors within and outside healthcare environments shape the ways these adolescents interact with adults in positions of authority. The participants’ daily interactions with teachers and peers—with whom they often feel unseen or unheard—set the stage for healthcare visits. This experience relates to “the duress of liminality” (Suárez-Orozco et al., 2011), which describes an enduring sense of exclusion from belonging—to either the society in which a person was born or the receiving society. This sense of “perpetual outsider-hood” (Suárez-Orozco et al., 2011) can cause newcomers to avoid accessing healthcare even when readily available (Castañeda and Melo, 2014). Given that the relationship established with the healthcare system during adolescence supports healthy lifestyles into adulthood (Smedley et al., 2003), it is important to be aware of what concerns and matters to immigrant Latino youth.

Yet, our findings, critical to those working in healthcare, are also crucial to others in authority with whom young people interact. First, stereotyping can affect relationship development in many ways. Generally, immigrant Latino youth seeking healthcare have a specific goal for the visit (e.g. school immunizations, a sports physical), whereas providers see an adolescent’s visit as an opportunity to address a range of issues and behaviors that can appear unrelated to the youth’s purpose. Moreover, when providers bring up issues related to sex (e.g. pregnancy, sexually transmitted infections), these youth tell us that providers should give careful attention to broaching sensitive topics in ways that are respectful and trust-building. Otherwise, Latino youth might perceive the physician as basing health questions on stereotypes rather than best practices in medicine.

Cross-cultural communication and language, and the related opportunities and challenges, came through this work in multiple ways. Youth told us that, depending on the circumstances and the actions of others, language is power, authority, responsibility, a weapon, and a bridge. This dynamic and its negative effects have been described in educational contexts (Suárez-Orozco et al., 2011). A clear need exists in the healthcare environment for trained and trusted interpreters with language and cultural proficiency (Elderkin-Thompson et al., 2001; Flores, 2005; Karliner et al., 2007; Lee et al., 2006). Although competent interpretation is required under federal law (Chen et al., 2007), youth described situations in which these legal and ethical guidelines were not followed. When youth are asked to interpret for family members, they believe their parents’ authority is undermined. This finding presents an interesting dichotomy given that even as immigrant Latino youth might be struggling with gaining independence from their parents, they also want other adults to treat their parents with respect. Actions that appear to give youth power, such as asking them to interpret, might deeply disturb them, shift family dynamics, and contribute to poor patient–provider relationships.

Given the disparities Latinos face in access to insurance (Centers for Disease Control and Prevention, 2013; Smedley et al., 2003), health-related costs are a burden that these adolescents say is poorly considered by physicians. Physicians might be unaware of the financial burden imposed by their treatment plans (e.g. prescription medicine, frequent visits, or preventative interventions) because payment systems are typically handled by staff. However, when physicians did not ask about financial realities, these teens felt as if doctors did not—and did not want to—understand the realities immigrant Latino families face. These teens did not want to be stereotyped as “poor” because they are Latino, but they did want people to understand the inequities imposed by policy regarding health insurance.

Most participants were child immigrants and arrived with minimal English abilities prior to enrolling in US schools, though they are all now comfortable and proficient in English. New immigrants’ limited English proficiency can lead healthcare providers to label miscommunication as non-compliance, masking the inability of the US healthcare system to accommodate diverse cultures or to understand cultural concerns (Abraído-Lanza et al., 2007; Castañeda and Melo, 2014; Corona et al., 2009; De Los Monteros and Gallo, 2011; Larson and McQuiston, 2008; Raymond-Flesch et al., 2014; Suárez-Orozco et al., 2011; Wilson et al., 2000) and meet the linguistic needs of a diverse population (Elderkin-Thompson et al., 2001; Flores, 2005; Karliner et al., 2007; Lee et al., 2006). Rather than focusing on behaviors to promote patients’ individual self-advocacy, the healthcare system must adapt to meet the needs of diverse, under-served patients. Understanding the healthcare barriers faced by immigrant Latino youth is critical to any effort to change policy and improve the system of care.

Limitations/strengths

This study focused on a small number of immigrant Latino adolescents residing in one new destination state. We did not focus on the difference between documented and undocumented youth nor on how country of origin may have affected participant responses since their experiences of making their way in the USA were similar despite these seeming distinctions and we did not ask about documentation status. In addition, our analysis did not bring to light significant differences regarding gender in the healthcare realm. However, subsequent analysis did point to important considerations regarding male immigrant Latino youth in the education domain and a paper exploring the implications for education is forthcoming (Leos et al., under review).

The transferability of our findings to similar settings is enhanced by our deep engagement and rapport with these youth that generated—over many months—detailed, nuanced information about the needs of young Latino immigrants, which is typically not obtained by more conventional research approaches. In addition, our study provides important lessons for researchers seeking to use participatory methods with immigrant Latino youth. A critical element was our partnership with a community-serving organization whose reputation is strong among Latino communities and whose organizational structure facilitated communication and engagement with the youth and their parents. It was essential to the success of the project that a representative from the organization was a member of the research team. With this partner, we were able to easily recruit nine youth (Group 2), whereas at the Group 1 site, recruitment was through (not with) an after-school teen peer-educator program that was not specific to Latino youth. Consequently, we were able to enroll only four immigrant Latino males. Moreover, the logistics of scheduling photovoice sessions at this site was complicated because the peer-educator program did not operate during the summer when our project was underway.

Nonetheless, our CBPR process was effective in engaging immigrant Latino youth as research partners. Using participant-generated photographs created a safe and trusting environment that enabled the youth to express their sentiments through a medium other than words, which often pose a barrier in their lives. Through the shared group process, a rich understanding of their life emerged, which was validated by their peers, the research team, and forum attendees in a way that could not have been achieved through other methods. Although other research has used photovoice to explore Latino youths’ perceptions on health-related topics (Findholt et al., 2011; Gubrium and Torres, 2013; Schuch et al., 2014; Vaughn et al., 2008) this study was the first using photovoice to engage immigrant Latino adolescents in documenting the impact of their migration experience on their interactions with the healthcare system in a new destination state. The strengths of this approach are evident as a way to (a) elicit, see, hear and value immigrant Latino adolescents’ perspectives, and (b) engage adolescents in applying the findings to inform next steps to reduce barriers within the healthcare system and enhance interactions with providers.

Conclusion

In sum, immigrant Latino youth tell us that although they are proud of their heritage, social stereotypes present a substantial barrier to forming relationships with adults outside of the Latino community. In healthcare settings, social workers often bridge divides between patients and providers, making the perspectives of these youth particularly relevant for the social work profession. Further, helping professionals in all disciplines can use this information to reflect on their interactions with clients of Latino heritage. The youth in our study ask that physicians, and all adults in authority positions, take time to know them as individuals with particular circumstances and unique life experiences. Although all patients likely want this individual consideration from their providers, it is particularly critical for stereotyped populations. Consistent with theories of adolescent development, the study youth reported feeling self-conscious and judged by people around them. Moreover, because these judgements center on immutable characteristics and highly salient life experiences, such judgements can scar and damage relationships that otherwise could be supportive. Providing immigrant Latino adolescents what they need to feel heard and accepted might be as simple as taking a few minutes to ask about the young person as an individual, giving them information that contextualizes sensitive questions, and being willing to negotiate around the answers. From a systemic perspective, more attention needs to focus on policies and protocols in healthcare settings and in schools to ensure adolescents are not put in difficult positions that undermine parental authority or silence self-advocacy.

The perspectives shared here provide important guidance for future research to understand the ways in which different systems and individuals reinforce perceptions. Specifically, authority figures in educational settings are likely unaware of how their interactions with immigrant children set the stage for how those children and families will interact with other systems such as the criminal justice and healthcare systems. Likewise, healthcare providers are likely to view their interactions with new immigrants in isolation, failing to recognize the community impact on any given encounter. Examining such relationships in research with large samples to enable sophisticated quantitative analysis would be useful in documenting the findings suggested by our work.

Much work in healthcare centers is focused on preparing patients for clinical encounters with physicians, such as teaching patients to ask questions. Our findings suggest that it is at least equally important to prepare providers from multiple systems to understand the perspectives of diverse populations. A critical need exists for interventions targeted to providers to increase their understanding and comfort with people of color of all ages as an important step towards reducing stereotypes and countering implicit bias. Such interventions must be well formulated and tested for efficacy and effectiveness (Hall et al., 2015). Experiences in which providers can be put in posture to learn from their patients, such as the photovoice forum, provide a potentially powerful change experience that can influence providers in interactions throughout their careers (Chapman et al., 2017). Our work demonstrates that both youth and providers are eager for mechanisms that help them connect in new ways. Future work must focus on documenting the impact of such experiences on provider attitudes and behavior, system changes, and patient outcomes.

Footnotes

Acknowledgements

We appreciate the support of our entire Envisioning Health team, including Robert Colby, PhD, Ohio Humanities Council; Steve Day, MCP, School of Social Work, University of North Carolina at Chapel Hill; William J. Hall, PhD, MSW, LCSWA, Sheps Center for Health Services Research, University of North Carolina at Chapel Hill; Kent Lee, MA, Department of Psychology, University of North Carolina at Chapel Hill; John McGowan, PhD, Department of English and Comparative Literature, College of Arts and Sciences, University of North Carolina at Chapel Hill; Keith Payne, PhD, Department of Psychology, University of North Carolina at Chapel Hill; and Rachele McFarland, MSW Candidate, School of Social Work, University of North Carolina at Chapel Hill. The authors would like to thank our Latino adolescent partners for their enthusiastic participation in the photovoice project.

Declaration of Conflicting Interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by the National Institutes of Health/National Institute of Biomedical Imaging and Bioengineering (grant no. 1R24EB018620-01).

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