Abstract
This study explored the perceptions of accessibility and cultural effectiveness of refugee services in the northeast region of the United States from refugees, interpreters who work with refugees in accessing these services, and the providers of the refugee services. The study examined the perceptions of 51 refugees from 10 countries, five individual interviews with providers and 26 provider survey responses representing 31 different agencies, and four interviews from interpreters. Qualitative interviews were conducted using a semi-structured interview schedule, were audiotaped, and transcribed. Further data were collected through a survey. All data were analyzed using constant comparative analysis. Participants shared feelings of frustration that services seemed poorly coordinated among the agencies and that the agencies appeared ill-prepared for the unique experiences of separate refugee groups. The three perspectives of refugee service delivery, as a consumer, a provider, or an interpreter, shared the perception that there was not a mechanism for the different services to collaborate effectively with each other, to create a network of coordinated services that would enhance services while decreasing burdens on individual centers, nor was there a system to best prepare the centers for new refugees.
Introduction
In 2016, nearly 65 million people were displaced by war and persecution (UNHCR, 2017). A small percentage of this group are considered refugee status as defined by the United Nations High Commissioner for Refugees (UNHCR). A refugee is a person who has a well-founded fear of being persecuted because of race, religion, political beliefs, or other self-identity affiliation. Those with a refugee status are provided resettlement services through the UNHCR and the country of resettlement. In 2016, the United States admitted almost 80,000 refugees, and provided permanent resident status to just under one million immigrants (Martin & Yankay, 2012).
Community health centers and community social service programs that provide low-cost health care are on the front lines of providing services to new arrivals, be they refugees or immigrants; and therefore, they are also on the front lines of providing services to the most vulnerable populations. In 2016, the U.S. government admitted 80,000 new arrivals due to humanitarian concerns (Cleemput, Parry, Thomas, Peters, & Cooper, 2007). After conducting the required two-visit health assessment for all refugees, community health centers often become their ongoing providers for medical and behavioral healthcare.
Meeting the healthcare needs of refugees can be challenging, as they arrive from over 90 different countries, often do not speak English, and usually have few resources. The majority of refugees likely have experienced multiple traumatic events (Bischoff & Hudelson, 2010; Crumlish & Bracken, 2011). To be designated as a refugee by the UNHCR, there must be clear evidence that the individual has experienced severe disruption, and fears persecution in their country of origin. Many refugees flee their homeland due to conflict and war. Some have been tortured or forced to witness the torture of family members. All have experienced loss, whether loss of their homes, family members, careers, or physical and emotional health, to name a few. These traumatic events have long-lasting effects on individuals and families. For example, trauma can affect cognitive functioning, ability to modulate emotions, sleep and self-care, as well as individuals' sense of self and belief in a positive future (Adams, Gardiner, & Assefi, 2004; Gonzalez, Kane, Binko, Shapira, & Hoogendoorn, 2016; Linden, Lyons, & Scannapieco, 2013). Individuals experiencing trauma may find resettlement even more stressful, learning a new language especially difficult, and managing chronic illness more challenging (Bakker, Dagevos, & Engbersen, 2016; Boucher, 2009; Myers, 1997). There is debate in the literature regarding the prevalence of PTSD in this population, as well as on the accuracy or helpfulness of the DSM criteria in assessing traumatic stress in individuals from non-Western cultures (Dinh & Groleau, 2008; Saya, Aung, Gast, & Lewis, 2016). Dinh and Groleau (2008) argue that PTSD is a cultural construction by Western-trained mental health providers and may not reflect the cultural interpretation of symptoms by non-Western individuals. These cultural differences can interfere with refugees' access to mental health services, the effectiveness of providers' treatment approach, and the perceived helpfulness of interventions. In addition to trauma, there are other mental health issues that refugees experience during resettlement, with depression and anxiety being the most prevalent (Brauch & Scheffren, 2012; Danner, Robinson, Striepe, & Pang Foua Yang, 2007; Slewa-Younan et al., 2012; Taylor et al., 2014).
Cultural and linguistic barriers are frequently cited as factors that can diminish the effectiveness of care for refugee populations (Kale & Syed, 2010; Weine, 2011; Westermeyer, 2011). With ever-increasing numbers of refugees entering the U.S. annually, community health centers must develop responsive and flexible approaches to service delivery. These flexible approaches are often discussed in terms of “cultural competence.” Cultural competence implies that providers are able to work effectively with various cultures due to specifically acquired knowledge and skills (Bagchi, af Ursin, & Leonard, 2012; Dahal, Qayyum, Ferreyra, Kassim, & Pottie, 2014; de Almeida Vieira Monteiro & Fernandes, 2016). Recently, the literature has reflected a growing dissatisfaction with this term as it suggests that the provider can be competent in working with diversity without acknowledging the role of the patient or consumer (Kirmayer, 2012). Instead, researchers are finding other ways of describing the skills and knowledge needed to be culturally effective. These skills and knowledge rely less on knowing the specific characteristics of a particular group and more on abilities that enhance mutual trust, curiosity, non-judgmental interactions, and an approach that works with the patient or consumer of services, viewed as an expert on his/her own culture, to better understand the individual's strengths, experiences, and perspective (Foronda, Baptiste, Reinholdt, & Ousman, 2016; Grant & Guerin, 2014; Hartling, 2008; Heer, Rose, & Larkin, 2016; Jani, Pierce, Ortiz, & Sowbel, 2011; Khoury & Manuel, 2016; Olaussen & Renzaho, 2016; Purnell, 2016).
Studies have explored specific refugee groups (Brennan, 2010; Dubus, 2015; Jensen, Norredam, Priebe, & Krasnik, 2013; Joshi et al., 2013). These studies highlight the uniqueness of each refugee group. Age (Dubus, 2015), culture, and context for fleeing (Joshi et al., 2013), and experiences upon resettlement (Jensen et al., 2013) are some of the factors that create different challenges for each refugee group. This uniqueness of each group of refugees speaks to the challenge of providing culturally effective services. Continuous changes in country of origin, language needs, health and mental health needs, and cultural experiences are a significant problem for community health centers and impact their ability to provide culturally effective services (Adams et al., 2004). This study sought to explore the perceptions of the cultural effectiveness of services provided to refugees through community health centers and other social service agencies.
Methods
This is a mixed-methods study using data from surveys, individual interviews, and focus groups. The institutional review board of the affiliated institution approved each stage of the study. We used a community-based participatory approach. From the planning stage and throughout the research, we relied on service providers, leaders within the refugee communities, and members of the communities to guide each stage of the research (i.e., focus of the research, participants, data collection, data analysis, and significance of the findings).
Participant recruitment and data collection
To recruit service providers and interpreters, we located the centers and agencies that work with refugees in three of the largest refugee communities in the geographic region of the investigators. From these communities we were able to develop working relationships with the centers and agencies and recruit providers and interpreters.
For the refugee participants, we used a snowball effect in developing our participant pool, at first asking service providers to identify the asylum seekers and refugees, and then participants introducing us to other refugees. In addition, we interviewed service providers and interpreters of healthcare and social service agencies who provide support to refugees.
The providers and administrators of the community health centers who were interviewed in the earlier phase of the study supported the project by providing invitation letters and outreach materials to refugee service recipients. These materials were translated into five languages (Arabic, English, French, Portuguese, and Spanish). Further translations in the most common languages used by recipients of the services were available if needed. The invitation letter was also made available through providers of social services resettlement agencies, human service agencies, mutual aid agencies, and health centers. The researchers were available on-site for questions, as the administrators of these services saw fit.
Informed consent was obtained from each participant both verbally and in writing. Potential participants were informed that their participation in the study was voluntary, not related to any service agency, and that their participation or lack thereof had no effect on the services they receive from community agencies. They were informed that all information was confidential, and that the data was securely stored. Any parts of the interview were only to be made public anonymously and aggregately to protect the confidentiality of the participants. The participant was reminded that they could decline to answer any question and that they could end the interview at any time.
Each interview was conducted with the use of a professionally trained interpreter, and at a time and location that was convenient and private for the participants. The interviews were audiotaped with permission from the participant, and later transcribed. The interview questions focused on the interviewees' experiences with the services provided for refugees. For the refugee participants, the focus was on the services they received upon arrival to the U.S., with a particular focus on the Community Health Services received. Questions were open-ended and intended to solicit the participants' subjective experiences.
For the refugee participants questions included: What is important for health and service providers to know about your culture and/or experiences as a refugee? What feels most different about healthcare in the United States versus in your country of origin? If your current doctor or service provider visited your country of origin, what do you think they would be most surprised by? What could Centers and agencies in the United States do to make the resettlement easier?
Questions (in-person and via survey) for providers included: What is important for providers to know about refugees? Are there differences in how you treat refugees who come from different countries? What would help you in providing culturally effective care to refugees?
We found the provider participants were hesitant to share negative perceptions of their agency. This dynamic led us to find other means of obtaining the provider's perspective. Therefore, in addition to the individual interviews with service providers at each location, we distributed an anonymous survey to community health centers and social service agencies throughout the region that provide services to refugees. The survey included questions to determine their preparedness to meet the needs of refugee populations. For instance, do they understand the different interpretation opportunities (phone vs. in-person)? Do they know the interpretation preferences for refugees? Are they aware of the different lives, cultural needs, and homeland experiences of the clients?
For interpreters, the interview questions included: What, if anything, makes interpreting for refugees different than interpreting for non-refugee groups? What do you think providers need to understand when working with interpreters for refugee clients?
Data analysis
The study used surveys and in-depth interviews. We used constant comparative analysis (Charmaz, 2006) and each author separately read the transcripts of the interviews. When all the transcribed interviews were coded, the authors shared their codes, sorted for shared codes, discussed differences in codes, and continued this process until agreement was reached on the codes that best captured the shared concepts among the narratives. The codes at this phase included descriptions of the services offered, self-perceived needs of the refugees, as well as service providers' and interpreters' perceptions of refugees' needs, challenges in accessing care, cultural barriers, stressors that providers experienced, and stressors expressed by refugee participants. These codes were then discussed further, resulting in some codes being consolidated into categories that more fully described the phenomenon (i.e., agency cultural competence as perceived by refugees, provider self-perception of cultural competence). Relationships among the categories were discussed and compared.
Findings
At the end of data collection, there were: 1) 51 refugee interviews, 2) five individual interviews with providers, 3) four individual interviews with interpreters, and 4) 26 survey responses from providers.
Countries of origin of the refugee participants were Eritrea (10), Democratic Republic of Congo (7), Uganda (7), Bhutan (6), Somalia (6), Iraq (5), Ethiopia (4), Burma (Myanmar) (3), Moldova (2), and Haiti (1). Ages of the refugee participants ranged from 23 to 41 years old. The average length of time resettled in the United States was 4 years. Providers' ages ranged from 28 to 59. All providers were U.S. born, with English as their primary language. The interviewed interpreters were foreign born (in Bhutan, Democratic Republic of Congo, Eritrea, and Iraq) and fluent in English, their native language, and at least one other language.
The participants presented similar concerns from their varying perspectives (as recipient of services, providers, and interpreters). The concerns were: 1) services for refugees are not well coordinated among the service providers and agencies, leaving providers feeling strained and refugees feeling disengaged from possible available services, and 2) community health centers are not well prepared for the specific needs of new refugee groups.
Poorly coordinated services among agencies and service providers
Refugees
The refugee participants came from 10 different countries yet shared similar challenges in accessing healthcare and social services in the United States. The participants described the difficulty in adjusting to their new community. The participants felt overwhelmed when they first arrived, and this made it difficult to remember the services available. They also mistrusted the service agencies because of rumors they heard. As one Somali woman (age 26) explained: “You can't spank your child here or they will take your children away. So, nobody asks for help. Nobody wants them to come to our homes.” Because of feeling overwhelmed and mistrustful, they were not aware of services that were available to them. Even those that they were made aware of seemed foreign to them. As one participant stated, (Bhutanese, 25, male), “We don't know what preventive care means. They told us to do certain things or go to visits, but we don't understand why they want us to. Do we have to?” When participants did not attend scheduled appointments, the clinic would call them and tell them to reschedule, prompting the response, “But we aren't sick” (Bhutanese, 25, male).
In addition to being confused or afraid of services offered, participants discussed the services they wished they had. Some of the participants had arrived in the United States with little schooling and wished that they could have continued in the United States' high school system, feeling that they were not ready for a community college: “After you are 21 you can't stay in school even if you need it. We need it. We can't keep up at a college level”(Republic of Congo, 23, male). Language acquisition was a common challenge for the participants. This young man's description captured the experiences of many of the participants. He was reflecting not just on his difficulty in learning English and the culture, but was also concerned for his parents who would have a more difficult time: My mom and step-father are living in camps. They can't read or write. They are about to come here. I am thinking, “What are they going to do? What can I do for them?” They don't even know how to speak Nepali.
Language was a prominent barrier to services, but so too was a lack of understanding of the services available. As one refugee participant described it: We arrived late at night. The plane landed around 1am. Some lady drives us to our apartment. She was nice but I don't remember much. I was so overwhelmed. Then the next day we were alone in the apartment. About a day later the lady came back with a refrigerator. That was the last we saw of her. Then someone tells us we need to go to this health clinic. That was the first time we saw anyone for services. It took me nearly a year to figure out how to reach a [social] worker. There was so much I didn't understand.
Interpreters
The interpreters echoed many of the same concerns as the recipients of services. They identified language as a major barrier for refugees accessing services. They also described the need to educate refugees on the services available and to ease any fears the refugees might have about using the services: My job is to interpret. That means I repeat what is said back and forth. But that isn't all that I do. I don't get paid for all I do. I help them [refugees] understand this country. I tell them services that they can use. I know other [interpreters] don't do this. I know they just interpret. But how can I not tell them?
Providers
The providers reported difficulty in reaching out to refugee communities. They reported the high rate of no-shows for appointments and poor patient compliance. Most understood that refugees faced many more hurdles in obtaining and understanding services than other communities and did not feel equipped to case manage their needs. As one provider stated: I give them a prescription. Maybe they will take it as prescribed. Maybe not. I'll see them again in here. On their charts will be a note from the emergency room. Of course if they don't take their medication they will wind up there. When I sit down with them they will tell me they couldn't afford the copay at the pharmacy, or that they didn't understand what I told them. They need more than what I can write on a prescription pad. I have 10 minutes with them. I share those minutes with the interpreter. I don't have time to do more. (Healthcare provider, 43) I can't take him to the welfare office to submit his forms. But that is what he needs. Instead I give him a donated coat because that is what I have. And, I know that he will go across town looking for financial assistance and they will give him a donated coat too.
Centers not well prepared
Refugees
The refugee participants discussed many examples of feeling misunderstood, scared, or invisible when at a healthcare center or social service agency. They often did not feel that providers, especially healthcare providers, took the time to ask them questions about their recent experiences in the refugee camps and about arriving in the United States. Very few were asked about their healthcare history in their country of origin. There was a perception that the doctors expected the participant to understand the medical terms and conditions. As one woman from the Congo (age 26) explained: They just told me I have diabetes. I nodded like I understood. I thought maybe he would tell me more. But he never did and I never asked. It wasn't until months later that I got sent to the emergency department that I understood that I was supposed to take the pills every day.
Interpreters
The interpreters described feeling “pulled in” when the provider was unable to communicate with the client. One interpreter stated it this way: I can tell he [the doctor] is mad. He says he needs me to give the client these instructions. And I do. But it is pretty clear to me that the client understood the instructions but was too … there is no way the client was going to give a stool sample. I mean, culturally, well, it just would have to be approached differently.
Providers
The providers did not feel prepared to address the characteristics and needs of each refugee group when they first resettled. They described “working blindly” until after a number of years a community leader emerged and was able to help providers reach out to community members, functioning as a cultural liaison for the providers and community, and beginning to bridge the various agencies for the refugee recipient of services. Some health centers developed a “one model fits all” approach to providing services to refugees. As one provider stated, “Depression and trauma is depression and trauma. I don't think it matters which country they are from. They all will need CBT (cognitive behavioral therapy) and a medication evaluation.” This perspective seemed to be born of necessity among participants who felt restricted in their time to learn about new cultures. These participants came from centers who received many different refugees on a regular basis. While this was the approach some providers took, most wished that they had the time to learn the medical history of the clients, the conditions in their homeland, the reason for their resettlement, and their cultural beliefs, especially on medical issues. Two centers described having the “luxury” of working with the same community for many years. These centers felt connected to the communities they served in ways the other centers did not express and more of their core staff were bilingual and bicultural in the client's primary language and culture.
Not only did many of the centers feel ill-prepared for new arrivals, but they also felt stretched thin with respect to the services they could provide. In addition, the providers felt that they had to focus on the day's schedule and were not able to network within the communities to gain an understanding of the various services available. One provider stated, “I bet there are services out there, but I don't have time to make those partnerships.”
Discussion
The narratives of refugees, interpreters, and providers who participated in this study provide a picture of some dilemmas in the current state of mental health service delivery for refugees. The findings of this study show that while many centers and agencies face similar challenges, there is no mechanism for them to collaborate effectively with each other to create a network of coordinated services that would enhance services while decreasing the burden on individual centers, nor is there a system to best prepare the centers for new refugees. Much of the literature on services for refugees focuses on integrating behavioral health services with health services (Feldman, 2006; Gould, Viney, Greenwood, Kramer, & Corben, 2010; Hee Yun, Lytle, Pa Nhia, & Lum, 2010; Hill, Gray, Stroud, & Chiripanyanga, 2009; Jensen et al., 2013; McMurray, Breward, Breward, Alder, & Arya, 2014; Nadeau, Rousseau, & Measham, 2014; Njeru et al., 2016; White, Solid, Hodges, & Boehm, 2015). Having health and behavioral health services housed in the same facility increases behavioral health usage by refugees and encourages communication between primary care providers and behavioral health providers, and thereby enhances the cultural effectiveness of treatment.
Refugees are resettling around the world due to wars, poverty, and persecution at rates never before recorded (UNHCR, 2017). Each year, the statistics change on the leading countries of origin for refugee admissions (Martin & Yankay, 2012). Those who work with refugees must continuously adapt to new arrivals while also providing services to more established refugee groups. New arrivals come with unknown backgrounds, which may include experiences of trauma, particular language needs, as well as a need for social supports that may not be available at the agencies. Established refugee communities continue to have needs, and those needs change as they move through various life stages. Community health centers and social service providers are responsible for meeting the needs of each of these groups, and have varying self-reported success in doing so (Awuah-Mensah, 2016; Daley, Gravgaard, & Lemola, 2016; Dykstra, 2016; Frost, Markham, & Springer, 2018; Olaussen & Renzaho, 2016). The most successful accounts came from those communities where the refugee community was well-established. In these communities, members of the refugee community have become leaders, serving as cultural interpreters between service agencies and the refugee community (Langer, 2008; Miklavcic & LeBlanc, 2014). These leaders can address the gaps in service delivery by being aware of the available services and working with agencies and refugees to ensure that those services are well-coordinated. These services include healthcare, behavioral healthcare, housing, transportation, education, employment placement, and language services. Even in those communities with strong leaders, this can be a difficult, and often unpaid, task. In new communities, the refugee group is unestablished and lacks the resources to self-advocate. Service agencies which are already struggling to provide services are often unable to provide the coordination of services among agencies. In either circumstance, a community with leaders, or one that has newly arrived, knitting together services is challenging. While the literature reflects the growing acceptance that integrated health and behavioral health services strengthen treatments, it is not reflective of the need for careful and continuous coordination of other services.
In the United States, “Community Mutual Aid Associations” (CMAA) are community self-help organizations that provide culturally specific services and are most often staffed by members of the community. These organizations can help community members navigate and coordinate services. While not present in every city or state, when available they function as community leaders and advocates (Bloemraad, 2005). In this study, although the providers were aware of these organizations, they did not work closely with them. The CMAAs were rarely contacted by providers. This was similar to the frequency of contact a provider might have with the subsidized housing office, financial assistance offices, or any other general social service.
Limitations
This study was based in the New England area of the U.S. The study included refugee participants from 10 countries. This revealed that there are common experiences among the groups regardless of country of origin or culture. While studies have shown that the country of origin, culture, socio-political, and geographic differences of refugees affect resettlement experiences (Das, Dubus, & Silka, 2013; Pudaric et al., 2003; Kirmayer, 2012; Wagner et al., 2013), it is interesting to note the similarities. A larger study with a national sample might find more similarities and differences that can inform best practice.
The participants in our sample were relatively young. It is possible that a sample with older participants might have presented different challenges and experiences with services. The participants in the population that we studied saw themselves as capable workers who felt discouraged by their unemployment or underemployment. A longitudinal study would provide invaluable information on the life course of refugees.
Conclusion
Settling into a new country is challenging for all immigrants. Refugees face additional challenges, often stemming from traumatic experiences prior to resettlement, and few resources once resettled. Refugees often arrive without an existing community into which they can integrate. Communities may need years to establish themselves, to identify leaders within the community, and to have previously resettled members who can serve as cultural liaisons. It may be helpful to have a mechanism to work with new communities to develop leaders who can serve as liaisons between the community and service providers, and to provide guidance for new arrivals. The providers in this study acknowledged that they relied on community leaders to educate their staff on the needs of the community, and to help reach out to its members. CMAAs provide many services that can fill the gaps between agencies (Cordero-Guzmán, 2005). Increasing support for CMAAs could provide more community-based mutual aid centers. However, this study suggests that CMAAs need to be more fully integrated into service delivery at health and behavioral health centers. Perhaps sharing the same location among the three organizations might enhance service coordination. Participants believed that an established orientation process provided by community leaders could ease the transition for new arrivals. Partnerships between communities and health, education, and social services often occur organically as community members become involved and agencies need to continue to look for other ways of developing these partnerships (McNeely & Morland, 2016). However, study participants noted that there was no official method to identify and develop a working alliance with community leaders. Establishing a procedure within the health/behavioral health community for cultivating community leaders would be helpful. Once leaders are established, they can orient new arrivals toward the services offered, identify possible cultural concerns, and serve as a bridge between the two cultures. One recommendation from a refugee participant was to have a mentor program where an established refugee would “buddy” with a new arrival refugee to help with the transition. This model has been shown to work well, and is compatible with existing CMAA structures (Elliott & Yusuf, 2014; Im & Rosenberg, 2016; Pittaway, Bartolomei, & Doney, 2015). These studies identify important benefits of community members helping each other, and methods of enhancing community leadership. However, a review of the literature shows a need for further research on ways of integrating services, bridging isolated service delivery, and managing care among the providers.
In this study, the interpreters served the role of a bridge, usually without the sanction of the agencies for which they interpreted. The interpreters of this study felt that the needs of the community warranted their stepping out of their role as traditional interpreters and into the role of cultural liaisons and at times as case workers. It might prove beneficial to have interpreters trained and prepared to take on these additional roles. Interpreters are critical for effective, culturally competent service delivery. Training agencies and interpreters to use the cultural expertise of the interpreters more may enhance the provision of culturally competent services. There may need to be more interpreters trained to be available for face-to-face interactions that these enhanced roles require.
One challenge for providers is the ever-changing demographics of the refugee populations they serve. Providers should be prepared to care for the specific needs of the new refugees. Without this preparation, the providers resorted to a “cookie cutter” approach, treating all groups similarly. The greatest burden identified by the providers was the limited resources available for this population and their inability to provide some basic services, such as affordable legal aid and safe housing.
One approach that may lessen the strain on these agencies is to have a coordinated system of communication among the agencies. In this study, agencies were not aware of all the resources in the community, and wondered if they were duplicating services or missing some needs entirely. A coordinated system might distribute the needs of refugee populations more efficiently and provide better access to information about the clients, for example, their homeland, the political and conflictual conditions that lead to their resettlement, endemic infections and parasites, cultural norms, languages spoken, etc. One low-cost solution could be a comprehensive internet resource for service providers to educate themselves on the cultural challenges, political climates, linguistic needs, as well as resources to help connect them to other providers for mutual support and innovative solutions.
It is hoped that the findings of this study will provide more information to help service providers who assist refugees to work collaboratively with communities, to share resources and strengths within their services, and to create leaders within the refugee communities who, with training, can assist new refugees to navigate systems and minimize compounding past trauma with the new trauma of not having needs met adequately.
Footnotes
Compliance with ethical standards
This study was pre-approved by the principal investigator’s institutional review board and complies with research ethical standards, including the rights, privileges and protection of the participants, as well as contact information for participants to obtain further information and resources as needed. Participation was voluntary and withdrawal was possible at any time. Anonymity was preserved and identifiable places or situations related to the participants have been changed. Oral and written consent to participate were obtained.
Declaration of Conflicting Interests
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 funded by a small internal grant from Wheelock College.
