Abstract
Refugees have recently been thrust into the spotlight worldwide. The strikingly negative rhetoric currently surrounding refugees calls for increased action from public health educators. In 2016, the largest proportion of refugees to the United States came from the Democratic Republic of Congo. This presents the opportunity to explore health needs as Congolese refugees resettle in the United States, with women taking priority due to health disparities linked to gender-based discrimination, trauma, sexual and gender-based violence, lower literacy rates, and less access to learning English. Insight into experiences of Congolese women in the United States is critical for the proactive development of socioculturally relevant health promotion rather than reaction interventions once health inequities are exacerbated. Therefore, to better understand perceptions and experiences of Congolese women in Indianapolis related to health and health care, a community-based participatory research study with an anthropological approach was conducted in collaboration with a refugee resettlement agency utilizing photovoice and semistructured interviews. Sixteen women participated in six photovoice sessions and home-based interviews. Selected photos, photo stories, and interview transcripts were analyzed using ethnographic content analysis. Major themes were health care system issues, social support, and daily experiences of health. Findings provide needed insight into the sociocultural context of health for Congolese refugees in the United States for both health educators and resettlement agencies. Findings also revealed specific priority areas for culturally tailoring health education and assets on which to build when promoting health for this population. Additionally, lessons were learned about the power of an anthropological, community-based participatory research approach to qualitative research for promoting health equity.
Keywords
In 2016, the largest proportion of refugees to the United States were from the Democratic Republic of Congo (DRC). With 16,370 Congolese refugees (19% of all refugees) entering the United States last year, DRC refugees surpassed nationals of Syria (12,587), Myanmar (12,347), Iraq (9,880), and Somalia (9,020; Krogstad & Radford, 2017; Zong & Batalova, 2015). Due to ongoing atrocities in DRC, the U.S. Department of State (2014) declared intent to resettle nearly 50,000 DRC refugees from 2013 to 2018. Though political circumstances in the United States are uncertain regarding refugee admissions, it is likely that DRC refugees will continue to outnumber those from other countries as war continues to engulf parts of the DRC (Ranard, 2013).
Refugees, including those from DRC, experience health and health care challenges including mental health and trauma (Ellis, Murray, & Barrett, 2014) and history of food insecurity (USAID, 2016). Risk for obesity has been noted for refugees from Asia utilizing benchmarks from the World Health Organization, and it has been suggested that history of food insecurity in general may be related to increased risk for obesity (Nelson-Peterman et al., 2010). Other health concerns for DRC refugees include potentially higher risk for noncommunicable diseases (Centers for Disease Control and Prevention, 2014), access to health insurance and health care, and language barriers (Ku & Jewers, 2013). In addition, DRC refugees may experience levels of racism (Phyllis Jones, 2000), sometimes found toward people of African descent in the United States along with discrimination against immigrants. Furthermore, women from DRC experience additional inequities linked to their potential history of sexual and gender-based violence (SGBV; Barot, 2017; U.S. Department of Health and Human Services [USDHHS], 2016), lower literacy, and the likelihood of being single or widowed (Barnes, Harrison, & Heneghan, 2004; USDHHS, 2016).
With limited time as a defined refugee group in the United States, there are gaps in understanding of specific health issues of DRC refugees for human service providers (USDHHS, 2016). Parasitic infections, malaria, mental health, and SGBV have been identified as priority health conditions for DRC refugees (USDHHS, 2016). Women experience inequities associated with gender roles, SGBV, discrimination, trauma, stigma, and gaps in culturally appropriate care. SGBV inequities are of particular concern for women fleeing the DRC based on high incidence of rape and sexual violence associated with the DRC conflict and prevalence of risks at refugee camps (Barot, 2017; USDHHS, 2016).
Refugees have recently been thrust into the spotlight worldwide. The strikingly negative rhetoric calls for increased action from public health educators. Given the relative newness of DRC refugees to the United States, their rapidly increasing numbers, and inequities experienced by women, there is need for public health educators to employ community-based participatory research (CBPR) to gain insight into the experiences of DRC refugee women. Quantified health needs of populations provide important, but incomplete, data for successfully promoting health and enhancing health care for refugees. Systematic examination of health experiences, assets, and needs of marginalized groups such as refugees can be critical for proactive development of tailored, socioculturally relevant health promotion and have long been recommended for health education research with underserved, marginalized populations (Airhihenbuwa, 1994; Marin et al., 1995). CBPR methods can empower and provide voice to participants, offer tools for sustainable public health interventions, and potentially reduce the need for reactive interventions once health inequities have been exacerbated (Airhihenbuwa, 1994; Bonmati-Tomas et al., 2016; Frohlich & Potvin, 2009).
Photovoice is one such CBPR method. Coined within public health to combine feminist theory and documentary photography, photovoice serves as a research method to collect data and has the potential to empower participants (C. Wang & Burris, 1997). Therefore, we designed a study using photovoice and semistructured interviews with an underlying rationale rooted in health equity as described by Braveman (2014). Specifically, we aimed to engage Congolese refugee women, who due to the complex web of sociohistorical, political, economic, and cultural factors experience disproportionately higher risk for ill health compared to other groups in the United States (USDHHS, 2016). The purpose of this article is to (a) describe application of an anthropological, CBPR approach to our study; (b) share findings from our study; and (c) describe lessons learned about utilizing these methods to promote health equity for refugees in the United States.
Method
This qualitative study was conducted in partnership with a refugee resettlement agency in Indiana. We employed an anthropological approach with components of CBPR to semistructured interviews and photovoice.
Research Context
Our study was implemented at a time when national attention was focused on Indiana because former Governor and current U.S. Vice President Mike Pence placed a ban on resettlement of Syrian refugees. A lawsuit was filed on behalf of our partner agency against this order (Exodus Refugee Immigration, Inc. v. Michael R. Pence, 2016). This led to a climate of anxiety among staff at our partner agency and required the agency to invest resources into legal action that took time away from the study. The consequences for our study were that the leadership started to view the project as a distraction rather than a collaborative endeavor. The rapid changes in priorities for the organization away from the project meant we had to continuously advocate for the collaborative human and financial resources that were initially committed to the project.
Anthropological Approach
For over two decades, there have been ongoing calls for health education research to employ interdisciplinary, anthropological approaches with an explicit focus on the the role of culture and health (Airhihenbuwa, 1994; Braithwaite, Bianchi, & Taylor, 1994; Edberg, 2015; Green, 2003; Krumeich, Weijts, Reddy, & Meijer-Weitz, 2001). As such, we collaborated across public health and international relations and also adapted principles from medical ethnography (Braithwaite et al., 1994) by focusing on health-related concerns of participants within their current sociocultural environments.
CBPR Study Components
Community Partnership and Joint Funding
In collaboration with a statewide refugee resettlement agency, we initiated a photovoice assessment with their clients to gather information to enhance the quality of services related to health. Through an iterative, collaborative process, it was determined that women refugees from DRC, Iraq, and Syria were the agency’s highest priority due to their relative newness to the state and limited experience of the agency in serving their needs. Joint external funding was secured in 2015, with the majority allocated for the partner. The funding agency was affiliated with state-level minority health funds. Therefore, they used the U.S. Office of Management and Budget (OMB) definition for race and ethnicity and excluded Syrian and Iraqi women from the study. Based on our experience, it is worth noting OMB definitions for race and ethnicity may pose challenges for promoting health equity (Federal Interagency Working Group for Research on Race and Ethnicity, n.d.).
Research Team
The research team consisted of four female members, including two faculty members as co–principal investigators and two resettlement agency representatives. Three of four members identified as refugees or immigrants to the United States, and the fourth had cultural familiarity of the population having spent 3 years immersed in Uganda. One resettlement agency team member was a woman of Congolese and Rwandese background who not only served as our interpreter but also guided us toward culturally appropriate photovoice sessions. Research team members were trained in basic foundations of semistructured interviews and photovoice (Shimshock, 2008; C. Wang & Burris, 1997). The study was approved by the University of Indianapolis Institutional Review Board in 2016. Written consent to share photos for World Refugee Day or in publications was obtained from participants.
Recruitment
Following initial institutional review board approval in April of 2016, participants were recruited by our Rwandese/Congolese research team member through announcement to clients when they came to the agency for services and by phone. Inclusion criteria were age 18 or older, female, and self-identified refugees from DRC. Written informed consent in Kinyarwanda or English was gathered by a team of two researchers. In cases where participants were not able to write their names, they were asked to give oral consent in the presence of a research team member who signed as a witness, and additionally they signed with an “X.” Informed consent was viewed as an ongoing process due to the high vulnerability of this population and was reaffirmed verbally throughout the project. We reiterated that the purpose of the study was to gather information to help refugees who come in the future.
Participants
This was a sample of 16 women. Twenty-one women were originally recruited and participated in an initial semistructured interview. However, five participants subsequently left the project, so their data are not included. The participants were all residents of Indianapolis, had been in the United States for 2 years or less, and were diverse in terms of age, employment status, marital status, whether they had children or dependents, and had spent time in refugee camps prior to entering the United States (see Table 1).
Characteristics of Participants (16 Consistent Participants in Photovoice and Post Interviews).
Procedures
Semistructured Interviews
A semistructured interview methodology was chosen for its utility in meeting our research goal of elucidating thoughts, feelings, perceptions, and experiences of our participants related to health (Fylan, 2005). The purpose of our interviews was to better understand the perceptions of and experiences of participants with health and health care in the United States. This method provided flexibility to use guided questions while simultaneously developing probes based on the answers of participants. Subsequent discussions and interviews were based on the data generated and emerging themes. Holding semistructured interviews in participants’ homes after the conclusion of the photovoice meetings allowed us to probe for deeper understanding of participants’ experience with photovoice (Fylan, 2005) and if participation had any impact on their knowledge, attitudes, or skills related to health. Interviews were conducted during 2 weeks before commencing photovoice meetings and 2 weeks after the conclusion. Interviews occurred in person lasting between 60 and 90 minutes. The majority of interviews took place in participants’ homes. All interviews were conducted by a team of two including one university researcher and our multilingual team member. Questions were asked in English, translated orally in Kinyarwanda or Swahili for participants, answered in participants’ preferred language, and translated orally to English. Interviews were audio-recorded with explicit permission.
We interviewed the participants before and after the photovoice sessions. The purpose of these interviews was to understand participants’ experiences with and perceptions of health and health care in the United States, as well as general experiences of integration into American society. Both the pre and post interview protocols contained eight open-ended questions. The post interview protocol included five, additional, open-ended questions to determine what, if anything, changed for the women who participated in the photovoice process. Data analysis was limited to the post interviews, along with selected photovoice meeting transcripts.
Photovoice
We selected photovoice before approaching our partner agency because it is noted as a CBPR method particularly appropriate for giving voice to people in cross-language research and those who have limited literacy (C. Wang & Burris, 1997). Photovoice with an explicit focus on marginalized populations or health equity had been employed by multiple other researchers over the past 20 years (Carnahan, 2006; Castleden, Garvin, & First Nation, 2008; Findholt, Michael, & Davis, 2010; Keller, Fleury, Perez, Ainsworth, & Vaughan, 2008; Livingood et al., 2016; Mamary, McCright, & Roe, 2007; McMorrow & Smith, 2016; Strack, Magill, & McDonagh, 2004; C. Wang, Burris, & Ping, 1996; C. C. Wang, Morrel-Samuels, Hutchison, Bell, & Pestronk, 2004). Our approach to photovoice was based on the pioneering approach of C. Wang and Burris (1997) with adaptations to suit our population and study goals.
For our study, 16 women participated consistently in six photovoice sessions lasting approximately 3 hours. They were held in a community center situated close to most of the participants’ homes in Indianapolis. The space, donated by a third community partner, was bright and comfortable. Our primary community partner, the resettlement agency, provided transportation to and from the sessions. The topics of the sessions were the following: (1) introductions to the project and group formation; (2) ethics and safety, camera practice, and assignment of Photo Mission 1 to take photos in their homes and communities of things that make them feel happy, sad, and surprised; (3) group discussion of the top two or three photos selected by participants and assignment of Photo Mission 2 to take photos in their homes and communities of anything they feel helps or hinders health or health care access; (4) group discussions of the top photos selected by participants; (5) member checking of previous group photo discussions, continued group discussions of the top photos, and permission to share photos in a public forum at World Refugee Day 2016; and (6) closing celebration and certificates of completion for all participants.
Strategies to enhance cultural appropriateness, increase trust, and emphasize safety were implemented by offering Congolese music, typical food, and providing child care. Each photovoice session commenced with playing Congolese or East African music selected by the women, providing food ordered from a local East African caterer, and occasionally dancing to end meetings. In Session 2, photovoice ethics and safety were addressed and laminated cards with information about the study and the university researchers’ contact information were given to the participants as an additional safety measure. Based on participant preference, they were given a $20 gift card to a grocery store at the end of each session as opposed to a lump sum at the end of the project. On completion of photovoice, participants were given all their photos and presented with an official certificate of completion. Sessions 3, 4, and 5 were audio-recorded.
In keeping with the advocacy goals that usually accompany photovoice for health promotion (C. Wang & Burris, 1997) and on the request of our community partner, it was decided at the outset of the project that selected photos and accompanying stories would be shared for advocacy purposes for World Refugee Day. Photos were displayed with accompanying stories in a community-wide event for World Refugee Day in June 2016, which garnered attention of local media and led to an article about the study in a local newspaper (Mullis, 2016).
Data Analysis
Semistructured post interviews and photovoice sessions that included photo discussions were recorded and transcribed verbatim. Inductive qualitative content analysis with an ethnographic approach was used (Altheide, 1996; Forman & Damschroder, 2008), with regular comparisons of data across each individual data source and between semistructured interviews and photovoice discussions. Two research team members analyzed the data utilizing an iterative, multistep coding process. Researchers first read transcripts independently with an inductive approach to ascertain and code data into segments aligning with the research goals. The researchers met repeatedly to identify major themes, relationships between themes, and and subthemes. Differences were discussed and explored at length until there was consensus. Data analysis was informed and enriched by the transdisciplinary perspectives from both public health and international relations.
Trustworthiness
Multiple actions were taken throughout the course of the study to establish trustworthiness of the findings in alignment with recommendations by Lincoln and Guba (1985). First, to establish credibility, the researchers formally engaged in member checking. The stories for selected photos that emerged through photovoice discussions and analysis were presented to the women to confirm accuracy and representativeness of what they had voiced in previous sessions about the photos. Next, multiple techniques for establishing confirmability were employed including triangulation of two data sources, use of multiple investigators to enhance reflexivity, and detailed audit trail notes of steps and processes followed for study design, data collection, and analyses. Finally, intentional efforts to establish transferability were made by providing thick description of our field experiences by trying to analyze data within the social and cultural context of our participants (Holloway, 1997). Our thick description consisted of detailed, contextualized notes from observers about the process of the photovoice meetings, content of discussions, group dynamics, home-based interviews, and research team meetings.
Results
Qualitative Research Findings
Our analysis of selected, transcribed photovoice discussions and interviews revealed three major themes of health care system issues, social support, and daily experiences of health. The majority of data illustrated multiple themes, sometimes falling into two or all three of the major themes.
Health Care System Issues
Participants consistently described facing systematic barriers to accessing health care. While most women understood the importance of having health insurance, they expressed frustration and confusion with how to use it and how to access health care. Figure 1 illustrates stories from multiple participants who took photos of health care facilities commenting on how they were physically impressive, but simultaneously not meeting their health care needs. Other points of confusion centered on understanding when Refugee Medical Assistance (RMA) from the federal level would be discontinued, when and how to use HIP, Indiana’s version of Medicaid, and why they continued to receive bills when they had insurance. Figure 2 illustrates the dichotomy of one participant’s gratitude and appreciation for Medicaid with simultaneous worry about it being discontinued.
Photovoice picture illustrating health care system theme.
Photovoice picture illustrating health care system theme.
Other participants also recognized the importance of insurance and compared it with prior experiences. One participant said, “Here if you do not have Medicaid you can die in your house, but back home you have money, you don’t have money you see a doctor.” Another participant, acknowledging the importance and challenges of insurance and stress related to health insurance access, said, “We know how important it is, but we are worried because when they stop it we don’t know what to do, how to do it, and that is the anxiety we all have.” A third participant said, “They tell me that I have insurance, but when I go to the doctor they bill me, that means that my insurance has been stopped, this is really a mess, I don’t understand, I don’t know why.” Additionally, there was confusion with billing, payments, and copays. This participant divulged that confusion and stress from the bills led her to ignore them, “I don’t understand it. I don’t know anything about Medicaid . . . they send me so many bills.” When asked what she did with those bills, she replied, “Nothing, it is there, sitting there.”
Another recurring issue within the theme of the health care system was frustration about the role of appointments. Participants felt disturbed about not being able to see the doctor without an appointment. One asked, “What do you do if your child is sick? . . . Appointment is more important than the health of my child.” Another expressed frustration that the doctor’s office might not offer appointments for a month or more, commenting, “I will be dead by then.” Yet another expressed her observation of this as a cultural difference, stating, “It is culture here. In Africa if your child is sick the doctor will see your kid right away but here they will make you wait. You can lose your baby in your arms.” One participant described frustration with accessing transportation when trying to keep an appointment.
It’s my card appointment, you see that’s the appointment and the date. . . . The appointment arrived and I could not get there. . . . I looked for my own ride, I asked in the community, somebody promised to take me and when the day arrived . . . he couldn’t take me.
The negative experiences with appointments seemed to be compounded by experiences of waiting for long periods despite having an appointment. Some women seemed to opine that lack of prearranged interpreters might have been the reason for waiting, while others felt discrimination played a role in long wait times. “They make us wait . . . they see everyone else. They will see us at the end—I feel disrespected.”
Based on the experiences of our participants, interpreters seemed to be available most of the time for health care visits either through phone or in person, which was surprising considering the obscurity of their first language. Despite availability of interpreters, participants expressed frustration with not being able to speak for themselves. One woman lamented, “Sometimes you just want to communicate on your own, for your own personal life, that you don’t want anybody else to hear . . . there’s even stuff you just avoid, you don’t talk about it.” One participant mentioned that though interpretation was provided, it was not culturally appropriate. Having been assigned a male interpreter from the local Congolese community, she said,
You know your interpreter is a boy here. . . . He is one of our refugee. . . . He may be my in-law in the future. . . . How am I supposed to tell him that I have period? That is even a shame, it is against our culture.
Challenges with cultural differences were also present in findings related to using pharmacies. In previous cultural contexts, participants’ experiences with pharmacies was markedly different than that in the United States. They were accustomed to speaking to the shopkeeper or pharmacist, receiving advice, and buying medicine without a prescription. One participant photographed medication, sharing a frustrated observation that one needed to be educated to navigate the pharmacy. Her experience was affirmed by others saying,
Back home . . . if you are sick you go to a pharmacy and you have to speak to a human being. . . . I have a headache and . . . they will pick something for you. . . . In this country, it seems like everybody has to be educated . . . a pharmacy is laid out like a regular store.
Social Support
Social support emerged as an existing asset, potential priority area for health education, and an outcome of participating in the photovoice process. Data supported both existing strength of social support within the local DRC community and benefits of connecting with American society. This theme enveloped social connections across multiple spheres of life including work, school, and community. Some participants shared fears about being unable to connect with Americans while also expressing happiness when they crossed a boundary to connect. One participant described a photo of her daughters at a birthday party:
That was happy because in my mind, the expectation . . . was because we don’t speak the language and we are not from here we are never going to have friends. I got here and making little friend, one and one. And suddenly when I got here the moms just drop off their kids with my kids and that makes me happy and surprised.
Another participant, also referencing a party in an apartment complex, said,
They invited us to a party at my kids school . . . There were a lot of professors for my kids and a lot of people from the community and they all invited us. . . . Its good and it makes me happy.
In reference to social support at work, one woman took a photo of her coworkers and reported: “In this particular company that I am working on they accepted me . . . you see how I am taking picture with my supervisor, it’s really encouraging even though I don’t speak English to work here.”
Since DRC refugees have only recently been resettled in Indianapolis, there are limited social networks available for them. Participant data suggested that the women benefitted from photovoice by collectively celebrating their culture and by social engagement that not only allowed the women to share their woes but was also a means to enjoy themselves. One woman took a picture of her native dress saying,
Happy picture. . . . I am with my community where we live, we remember our country, it is a dress of my culture. The fact that we are here in America, we are far, still remembering my culture makes me happy.
Based on our findings, it seemed that even though the women acknowledged the benefits of socially connecting, they rarely came together as a larger group. This could be hesitancy to come together on their own due to ethnic/tribal differences or logistical barriers.
They expressed positive feelings about opportunities for connection through photovoice both unprompted during the photovoice process (Figure 3) and in response to post interview questions about the experience. One woman chose a photo of a photovoice group meeting for her “happy” photo, saying,
That make me happy because . . . you see how we are guided here, we are all coming from left and right and the different corners, and we meet all here. And we talk in the same language and we kinda get along well. And make me happy to guide here with my people from back home.
Photovoice picture illustrating social support theme and photovoice feedback.
Another woman described more specific benefits she felt from social connections during Photovoice such as stress reduction:
You know it is relaxing, you forget about work, about fatigue of work. We know each other, we know we come from same place, we don’t live together, but you just put all of us together like that, we eat, we socialize, we dance . . . the fatigue from work it has disappeared for a minute . . . very good, very good.
Daily Experiences of Health
This theme emerged from data capturing existing health assets and challenges the women faced encompassing multiple dimensions of health. One participant took a photo and told a story providing insight into potential health challenges with acculturation related to TV consumption and physical activity levels, while simultaneously sharing a fear we heard more than once regarding police,
So, that picture, it’s a TV in my house because in this country, children cannot play outside, the police will come take them or you are a bad mother or something, it is the culture here . . . I guess.
Also present within this theme were data suggesting multiple insights into nutrition education with a culturally appropriate lens for DRC women refugees. Figure 4 illustrates assets in terms of receptiveness to messages from health care providers and actively seeking to eat healthy food, while also showing areas where health educators can provide more accessible, affordable options similar to what the women are culturally accustomed to. Additionally, one participant expressed surprise about the food variety compared with the countries she had been in previously, “That is surprising. In America, there is a lot of food. In Africa, there is not such a food variety. There is food in a can, fresh, in a box. That surprises me a lot.”
Photovoice picture illustrating daily experiences of health theme.
Several women shared experiences and challenges with managing chronic health conditions such as tuberculosis, HIV, and diabetes. One woman took a photo of her medication and offered this story regarding confusion surrounding HIV management now that she is in the United States:
That I have a condition disease that I used to take this medication but they do not give that to me anymore. I don’t understand why. The thing that is my problem, my highest concern, it’s one of them. They stopped my medication that I have been depending on all my life. They told me my blood count, it’s better but I don’t believe it because I have been told if I stop this medication you cannot live.
Another participant, who was over 30 weeks pregnant at the time, took a photo of her current doctor’s office sharing, “I take this at the doctor . . . this is sad because they find out I have diabetes, I have TB exposure.” Though it was unclear whether these were preexisting conditions, it was clear that they interfaced with the health system frequently.
Related to environmental health, a couple of women shared alarm about the conditions of their homes. One took a photo of a leak in her ceiling and said,
That is my house. Every time I am under . . . somebody who lives above me, every time they take a shower their water will come . . . under my roof like that . . . it will be smelling bad.
Another photo related to environmental health and insect infestation was accompanied by a striking story that simultaneously revealed potential for retriggering trauma (see Figure 5).
Photovoice picture illustrating daily experiences of health theme.
Several assets for health embraced among participants were revealed by our study. Physical activity was mentioned more than once with photo stories such as, “I like riding the bike and exercising. That makes me happy and healthy” and “I like to walk. Exercise.” In reference to a photo taken of a church service on TV, one participant shared, “I like to praise and worship.” A final story revealed assets of both healthy sleep and spiritual practices while simultaneously illustrating stress and potential mental health challenges related to life in the United States.
At 9, it’s my time to go to bed. If I don’t feel well I take that bible and read it and then I pray and go to sleep. The reason why I just take refuge to my bible is it gives me peace to my heart because if you think about it, the problem of this country, if you do not run to God you cannot live live in this country, America.
Lessons Learned From an Ethnographic, CBPR Approach
Utilization of an anthropological, CBPR approach to qualitative methods was a critical tool for our study. Access to this population and continued participation in the research was primarily due to the cultural connections and trust that had previously been established by our partner agency. Additionally, applying an ethnographic lens to visiting participants’ homes, conducting photovoice discussions, and data analysis was useful for enhancing our inductive approach and recognizing sociocultural contexts within which our results are situated.
A challenge that was anticipated was participants associating the study with the resettlement agency. We held meetings at the community center, which was geographically far from the agency, to aid in dissociating the study from the agency. Matters were understandably complicated by the fact that our interpreter and co-investigator was also the Health Navigator for the agency. We, therefore, reminded the participants at every interaction of our genuine interest in identifying positive and negative aspects of their experiences and encouraged them to candidly share negative experiences and suggestions for improvement of the resettlement agency.
Discussion
Congolese refugees are the fastest growing refugee community in the United States. However, there is limited research for offering human service providers a complete picture of their health needs and assets. To our knowledge, this is the first study to systematically examine health needs and assets of Congolese refugee women in a Midwestern U.S. city. Employing an anthropological, CBPR approach to photovoice and semistructured interviews provided valuable insight into the perceptions and experiences of participants. The inherent nature of photovoice as a research and an intervention tool showed promise for use by resettlement agencies and health educators as a means to empower refugees and capture their experiences.
Our findings are particularly salient to inform health education practice for DRC refugee women. Public health too often takes a deficit-based approach (Morgan & Ziglio, 2007). Assets such as existing knowledge, positive attitudes and practices, and social support were present across all three of our major themes, adding to the growing body of evidence advocating for identifying assets and starting where people are doing well as opposed to singularly focusing on deficits (Bonmati-Tomas et al., 2016; Doyle, Ward, & Oomen-Early, 2010; Livingood et al., 2016; McMorrow & Smith, 2016; Morgan & Ziglio, 2007). Furthermore, the social support theme revealed both existing social networks and areas for opportunity to improve services for this population such as providing culturally tailored social gatherings. This may be of particular importance for the resettlement agency. Currently, the majority of group interventions are mental health counseling groups as opposed to those that are more social and fun in nature.
Findings related to the health care system are consistent with previous studies of immigrant and refugee health such as confusion with the American system and health insurance literacy, transportation barriers, language barriers, need for interpreters, and lack of culturally appropriate services (Kehm, Hearst, Sherman, & Elwell, 2017; Ku & Jewers, 2013; Nelson-Peterman et al., 2010; USDHHS, 2016). Additionally, our findings regarding confusion about pharmacies in the U.S. cultural context and health insurance such as billing provide potential areas of focus for both health educators and our partner agency to incorporate into education services. Findings regarding daily experiences of health demonstrated ample areas for health educators and resettlement agencies to direct attention. Data illustrating fish and vegetables understood as healthy from the participants’ cultural lenses revealed a need to design culturally appropriate nutrition education on how to access affordable food that is culturally appealing. Findings related to mental health supported quantitative data identifying it as a priority condition (USDHHS, 2016), but provided context in everyday life in the United States that may exacerbate mental health conditions such as housing insecurity, moving often, or the stresses of everyday life in the United States. Some of the chronic conditions that our participants revealed aligned with existing evidence (Kehm et al., 2017; USDHHS, 2016), but again specific context was provided by our study regarding areas of confusion with health literacy and understanding why medication regimens may be different in the United States.
Limitations
Despite strengths, our study had limitations. Due to funding, we depended solely on the partner agency representative for interpretation and did not hire an outside language specialist for back-translation, so there is a possibility of decreased trustworthiness (Lincoln & Guba, 1985; Squires, 2009). Our participants only represented views from recent refugees who have been in the United States for 2 years or less. Due to the relative newness of the population, our findings may not be as relevant for refugees who have been resettled for longer. Finally, the status of both university researchers as outsiders who did not speak the same language as participants presented limitations to the extent to which we absorbed and interpreted the data. The composition of the research team with three members who were immigrants or refugees and prior experience of one researcher in East Africa allowed for some counterbalance to our outsider status.
Implications for Health Equity Practice and Policy
Our findings provide sociocultural data generated from a health equity approach. Our finding of strength-based assets is especially salient for health equity practice with DRC refugee women. Finding starting points of strength and building on them may help avoid further marginalizing vulnerable populations, as sometimes occurs with public health interventions (Silva, Smith, & Upshur, 2013). Specifically, public health, health care practitioners, and resettlement agencies such as our partner agency can better contribute to the reduction of health disparities by incorporating ways to understand the assets and strengths of their clients and build health education based on those strengths. Though photovoice was used in a formal capacity for this study, it is a tool that can be utilized readily by practitioners in community settings for low cost. Based on our experience, we recommend adapting photovoice in various settings with refugees from DRC and potentially other refugees due to its utility for uncovering health needs and assets and enhancing social support among participants.
Another way that practitioners can improve their work with refugees from DRC and ultimately enhance health equity for this group is to use our findings to improve socioculturally tailoring of their services. For example, health educators might consider tailoring health insurance literacy education for DRC refugees in navigating the transition from RMA to Medicaid and how to pay health care bills. Clear cultural differences were noted in several areas where practitioners could aim for improvement in culturally relevant care. One example might be teaching knowledge and skills about navigating American-style pharmacies from the sociocultural perspective of their experiences with pharmacies in Africa. Another cultural gap was noted in terms of expectations about appointments and wait times, so practitioners can work with DRC refugee clients to communicate the importance given to appointments and the inability of patients to see doctors right away within the context of the United States. Practitioners might also explore skill-based health care system education by taking DRC clients on field trips to gain familiarity and skill in navigating pharmacies and other health care options like “minute clinics” in pharmacies. Our findings indicated receptiveness by the women to messages gleaned from prior health care encounters about eating a nutritious diet, but simultaneously revealed a cross-cultural communication gap about what is meant and understood by “healthy food.” This calls for practitioners to have more awareness what clients from DRC are culturally accustomed to and better communicate accessible, affordable options within the U.S. cultural context.
Practitioners working with this population can also intentionally design structured social support, particularly for newly arriving refugee communities like the Congolese. For example, a community organizer or representative of a refugee resettlement agency can engineer opportunities for social interaction with the local community, especially in the neighborhoods where refugees are placed by resettlement agencies. Such interaction will help create goodwill and understanding and can be a great source of improving language skills. Neighbors can also serve as a strong source of social support and cultural education. Our findings suggested frequent gathering was beneficial, so practitioners in community settings might consider organizing social gatherings on a regular basis such as once a month. In addition to social interaction, the gatherings can also be a form of health support where participants can learn from each other’s experiences, particularly in relation to how they are managing their health and health care.
Overall, use of triangulated, qualitative methods and an anthropological, CBPR approach affirmed these methods can be powerful, multipurpose tools to build health equity. Not only can these approaches provide data to inform practice but they may lead to transformative experiences for participants. Emphasis on the value and importance of their voices to multiple stakeholders communicated via these methods may plant seeds of individual empowerment and collective support for equity. Sharing photovoice results widely through public exhibits and nonacademic forums can be a powerful public health advocacy tool to increase awareness and promote healthier policies for refugees. The current political context surrounding refugees in the United States demands that public health educators step up to promote equity for refugees. Our findings provide practice-based evidence for better meeting health needs of DRC refugee women and working toward health equity for this population.
Footnotes
Acknowledgements
We are grateful for the courage and commitment of our participants as well as thankful for the strong collaboration with our community partner agency.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by an internal grant from the University of Indianapolis and by the Indiana Minority Health Coalition State Master Research Plan Grant for 2015/2016.