Lost in Translation: Perceptions of Patient Centered Care Among Iraqi Muslim Women

Iraqi Muslim women encounter many barriers to receiving patient-centered care in the U.S. health system. When expectations between the patient and provider differ and a disconnect or misunderstanding occurs, Iraqi women can be at risk for unintended poor quality care. Health providers have incentives to implement patient-centered care and yet face multiple challenges in doing so when patients' values, religion, culture, gender and language are different from their own. This study aimed to identify sources of misunderstanding (referred to as disconnects) between health provider and Iraqi Muslim female patients as a means of informing providers about possible accommodations when caring for this population. To achieve this aim, a secondary analysis was conducted using 15 Iraqi Muslim female patient interviews from a previous qualitative research study that explored the perspectives and experiences of the women in the primary health care encounter. The six dimensions of patient-centered care provided a means of structural coding to identify disconnects and describe examples of what Iraqi Muslim women may be expecting in the healthcare visit. Resulting themes revealed sources of disconnects between provider and patient that are embedded in the health system and interpersonal aspects of the health encounter. Sources of disconnection between provider and patient presented as barriers to achieving patient-centered care included communication, discordant expectations and lack of cultural knowledge of the other. The findings suggest that a provider who accommodates a patient based on cultural knowledge and empathy may potentially see better patient outcomes through improved patient understanding and participation in care. Health providers who are aware of a patient's expectations and cultural norms have the knowledge to tailor patient-centered care dimensions to individual patients and potentially decrease health disparities.

LOST IN TRANSLATION: PERCEPTIONS OF PATIENTCENTERED CARE AMONG IRAQI MUSLIM WOMEN by Stephanie Hopkins A Senior Honors Thesis Submitted to the Faculty of The University of Utah In Partial Fulfillment of the Requirements for the Honors Degree in Bachelor of Science In Nursing Approved: ______________________________ Deb Penney, PhD, MPH, CNM Thesis Faculty Supervisor ______________________________ Lauri Linder, PhD, APRN, CPON Honors Faculty Advisor ______________________________ Sara Simonson, PhD, MSPH, CNM Honors Faculty Advisor ______________________________ Connie Madden, PhD, MS, RN Assistant Dean for the Baccalaureate Program and Student Services College of Nursing ______________________________ Sylvia D. Torti, PhD Dean, Honors College May 2019 Copyright © 2019 All Rights Reserved ii ABSTRACT Iraqi Muslim women encounter many barriers to receiving patient-centered care in the U.S. health system. When expectations between the patient and provider differ and a disconnect or misunderstanding occurs, Iraqi women can be at risk for unintended poor quality care. Health providers have incentives to implement patient-centered care and yet face multiple challenges in doing so when patients’ values, religion, culture, gender and language are different from their own. This study aimed to identify sources of misunderstanding (referred to as disconnects) between health provider and Iraqi Muslim female patients as a means of informing providers about possible accommodations when caring for this population. To achieve this aim, a secondary analysis was conducted using 15 Iraqi Muslim female patient interviews from a previous qualitative research study that explored the perspectives and experiences of the women in the primary health care encounter. The six dimensions of patient-centered care provided a means of structural coding to identify disconnects and describe examples of what Iraqi Muslim women may be expecting in the healthcare visit. Resulting themes revealed sources of disconnects between provider and patient that are embedded in the health system and interpersonal aspects of the health encounter. Sources of disconnection between provider and patient presented as barriers to achieving patient-centered care included communication, discordant expectations and lack of cultural knowledge of the other. The findings suggest that a provider who accommodates a patient based on cultural knowledge and empathy may potentially see better patient outcomes through improved patient understanding and participation in care. Health providers who are aware of a iii patient’s expectations and cultural norms have the knowledge to tailor patient-centered care dimensions to individual patients and potentially decrease health disparities. iv ACKNOWLEDGEMENTS First and foremost, I would like to acknowledge my incredible parents, Scott and Katy Hopkins, who have been examples of hard-work and positivity throughout my life. I would not have been able to finish this thesis or college without their love and support. I would also like to thank my friends and roommates who have acted as editors for me and also endured endless conversations and musings on health and health disparities. I would also like to express my appreciation for the University of Utah College of Nursing faculty and my nursing colleagues for their support and encouragement. Most importantly, I would like to thank my academic mentor Dr. Deb Penney for the hours of work she has put into teaching and guiding me through my first research writing experience. She is such an example to me and instilled in me an even deeper passion for the combination of public and clinical health for improved clinical outcomes. This thesis would not be possible without her thoughtful and valuable contributions. v TABLE OF CONTENTS ABSTRACT ii ACKNOWLEDGEMENTS iv INTRODUCTION 1 METHODS 6 RESULTS 7 DISCUSSION 16 REFERENCES 21 INTRODUCTION This thesis explores patient health care perceptions and the application of patientcentered care in Iraqi Muslim women with a refugee background. A secondary analysis was undertaken using qualitative data from a research study (Penney, 2015) that explored Iraqi Muslim women’s perceptions and experiences in the primary health care encounter. The original study used the lenses of critical ethnography and post-colonial feminism to explore the experiences of Iraqi Muslim women in their health encounters. All of the women had refugee status and wore a scarf (hijab) signaling their Muslim identity. The secondary analysis of the interview data uses the tenets of Patient-Centered Care (PCC) to highlight specific areas where patients (Iraqi Muslim women) and primary health care providers express misunderstanding. Problem Description Inequalities in health exist in the United States for minority patients and lead to health disparities and poor quality of care and health outcomes (Smedley, Stith, & Nelson, 2002). The few studies on Muslim women highlight several potential misunderstandings that patients experience in the health encounter based on race, religion, gender and language (Allen & Nielsen, 2002, Joshi, 2006; Shah, Ayash, Pharaon, & Gany, 2008). Health providers have a mandate to act on patient centered care tenets that strive to increase the quality of care for the patient by creating shared understanding and a partnership through the treatment process (Institute of Medicine [IOM], 2001). Although well intended, patient centered care may not translate well from provider to patient because of cultural differences and divergent expectations for the 2 health encounter. A disconnect or misunderstanding is likely to result between patient and provider when expectations differ, potentially leaving the patient with unintended poor quality care. The health care encounter is laden with provider and patient expectations and communication challenges that intensify when differences exist in each one’s background, culture and language. A secondary analysis using the structure of patient-centered care dimension as a lens reveals areas of misunderstanding or disconnect between provider and patient. By revealing key areas of disconnect, providers may increase their understanding of the Iraqi Muslim women health experience and adapt their care accordingly. Background The Refugee Convention of 1951 and the United Nations Refugee Agency defines a refugee as “someone who is unable to return to their country of origin owing to a wellfounded fear of being persecuted for reasons of race, religion, nationality, membership of a particular social group, or political opinion” (United Nations High Commissioner for Refugees [UNHCR], 2018, para. 4). Since 2007, 161,248 Iraqi refugees have arrived in the United States. They are one of the largest groups that have resettled in the U.S. and approximately 2,000 have settled in Utah (Refugee Processing Center, 2019). Iraqi women enjoyed one of the highest educational levels in the region and had access to a high level of medical care before the past decades of conflict (Barnes, 2009; International Organization for Migration, 2008). Iraqi people are of many origins and the majority fall under the ethnic category of Arabs (Arab American Institute [AAI], 2019). In the U.S. Arabs are not an identified ethnic group by the U.S. Census (AAI, 2019). There is a lack of literature specific to Iraqi women and most studies about patient encounters feature 3 Muslim immigrants, which can encompass dozens of distinct national and cultural groups. Patient centered care (PCC) is a broadening concept embraced by the Affordable Care Act, health care leaders, and insurance companies and aims to improve patient outcomes and control health care costs (Capko, 2014). Although started more than 15 years ago, it currently influences providers to strive for patient satisfaction and positive clinical outcomes (Capko, 2014). Patient-centered care encourages providers to be respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions (IOM, 2011). The Institute of Medicine’s Quality Chasm Report (2001) described the six dimensions of PCC as: 1) respect for patients' values, preferences, and expressed needs; 2) coordination and integration of care; 3) information, communication, and education; 4) physical comfort; 5) emotional support—relieving fear and anxiety; and 6) involvement of family and friends. Implementing PCC has correlated with higher levels of patient satisfaction, improved health outcomes and lower healthcare costs (Raja, 2015). The Affordable Care Act has given even more significance to PCC, making it a quality measure that hospitals must attain in order to gain reimbursement through the government and Centers for Medicaid and Medicare Services (CMS) (CMS, 2019). Patient involvement and satisfaction with care appear to be goals aimed at increasing the quality of care, yet inappropriately applied or inadequate PCC can be a source of patient/provider misunderstanding when respective sociocultural norms and expectations differ. The six dimensions of PCC can be utilized to highlight areas where these main patient-provider disconnects occur. 4 Patient-centered care can be difficult to achieve due to patient conditions and inherent differences between the provider and patient. More researchers attest to the difficulties in applying PCC among minority groups (Radwin, Cabral & Woodworth, 2013; Washington, et al, 2017), yet few specifics are given to explain how the application of PCC may cause a disconnect, or misinterpretation of care, among patients when their cultural context differs from that of their health provider. When a provider attempts to apply PCC without having some knowledge of the patient’s perspective, a misunderstanding can result and well-intentioned efforts by the provider may be a source of poorer quality health care and health disparity. Communication is an essential principle of PCC (Fiscella, 2011) and the most critical point of making the encounter effective. However, communication can fail between providers and minority patients and cause a disconnect because of language deficits, inadequate time, and poor understanding of respective cultural underpinnings (Beacom, 2010). Both the patient and the provider enter the health encounter with a different set of expectations and beliefs that can lead to a loss in translation of wellintended care. A decisive factor in appropriately practicing PCC is the understanding of what aspects of care are important to each patient (Bergman & Connaughton, 2013). Providers need guidance on how to adjust PCC to patients whose backgrounds (culture, religion, language, and expectations) differ from their own. This study is designed to provide examples of what Iraqi Muslim women may be expecting in the visit. With this information, providers may be equipped to adjust PCC efforts in a meaningful way to the patient. Project Aims 5 This thesis aims to identify the cultural (religious, ethnic, gender, language, social) factors that create a disconnect between primary healthcare providers and female Iraqi Muslim patients. This thesis attempts to identify and discuss the aspects of (PCC) that are expressed as a disconnect or misunderstanding from the viewpoint of Iraqi Muslim women patients. Highlighting the areas of misunderstanding may give providers information to bridge expectations and to foster cultural knowledge, so that healthcare experience for this population is improved. Specific aims include, 1) explaining the six dimensions of PCC; 2) identifying areas of patient-provider disconnect through the lens of the 6 PCC dimensions; and 3) to discuss the clinical implications and recommendations to mitigate the disconnect. The goals of this analysis are to highlight the possible barriers in caring for Iraqi Muslim women. The following questions were addressed in the analysis: 1) What expectations do Iraqi women have in the healthcare encounter? 2) What patient/provider communication limitations create misunderstanding and disconnect? 3) What beliefs do Iraqi women affirm and which beliefs create a disconnect in the patient/provider relationship? METHODS Qualitative data collection is a valued means of research because of the type of information it generates. Qualitative studies can provide understanding of social events and processes that are meaningful to specific people; it includes the exploration and 6 documentation of how people interpret and interact with the world around them (Tolley, Ulin, Mack, Robinson & Succop, 2017). Specifically, qualitative data can add new dimensions to quantitative data by describing health behavior, perceptions and experience while offering insight into research questions and concepts (Tolley et al, 2017). A secondary analysis of qualitative data of Iraqi women’s health encounter experiences was used in this study. Secondary analysis of primary qualitative research utilizes existing data to answer questions that were not previously addressed in the primary data (Szabo & Strang, 1997). The approach to secondary analysis for this study includes a systematic examination of the original data, initially categorizing it by subject, then identifying findings as they emerge (Hinds, Vogel & Clarke-Steffen, 1997). The original data collected from the dissertation entitled Experiences and Perceptions of Iraqi Muslim Refugee Women and Health Care Providers in the Health Care Encounter (Penney, 2015) focused on the health encounter and women’s expressed perceptions of their treatment, barriers and expectations as resettled refugees. The secondary analysis uses the lens of the six dimensions of patient-centered care as an aspect of the health encounter that was included in the study but was not part of the primary analysis. The proximity of the secondary analysis to the original researcher and intent strengthens the analysis (Szabo & Strang, 1997). Considerations for secondary analysis include a close link between original and secondary analyses in content and intent (Hinds, Vogel & Clarke-Steffen, 1997). Original study questions that cover closely related phenomenon in the secondary analysis provides a suitable fit for secondary analysis. In addition, a good fit for a secondary analysis occurs when the purpose of the original data is broad enough 7 to allow for definition of data (i.e., patient-centered care) to come forth. The interview data utilized in this study is a very good fit for secondary data analysis. Transcripts of interview data of 15 Iraqi Muslim women was read several times then meanings and examples of disconnects were discussed with the original researcher and confirmed for context and meaning. Interviews were conducted in English and Arabic in 2015. The interviews conducted in Arabic were translated and then transcribed into English for coding purposes. Patient-centered care dimensions were used as a lens to provide structural coding of the data and identified areas of the data that fit the PCC concepts (MacQueen, McLellan, Kay & Milstein, 2008). The two team members, consisting of the original researcher Debra Penney and the author of this thesis, discussed each code until agreement was reached. Categories were developed from the dimensions of the PCC structure and served to identify areas of disconnects between patient and providers. Categories merged into themes that describe specific areas of care that highlight disconnects from the Iraqi women’s perspective. RESULTS Study Sample All of the women in the original study lived in the Salt Lake Valley, were from Iraq, identified as Muslim and had a refugee background. As part of the inclusion criteria, they also wore a headscarf or hijab. The interviews were conducted in the women’s homes in order to provide a comfortable environment for the participants. The women chose between English or Arabic for the interview. Participant’s demographic information is listed in Table 1. 8 Table 1. Iraqi Muslim Women Demographic Information (n = 15) Characteristic Age Years in the U.S. Number of current family members in household Mean 40 3.4 4 Range 19-60 1-5 2-7 n Country of birth Iraq Syria Countries of refuge before arrival in the U.S. Egypt Jordan Syria Turkey Preferred language for interview English Arabic Marital status Married Never married Reason for medical visit Diabetes Eye problems Headache Joint or back pain Kidney, bladder infection Lump Stomach pain Routine check up 14 1 2 7 4 2 5 10 12 3 1 2 1 4 3 1 2 2 The themes include participant explanations of specific disconnects related to the PCC dimensions. The disconnects described by the women include areas where PCC was either disregarded or not actualized in the health encounter. Themes included, 1) gender preferences, 2) physical support, 3) emotional support, 4) coordination of care, and 5) provider knowledge. The disconnects are embedded in communication, discordant expectations and lack of cultural knowledge of the other. The ‘other’ in this case is the 9 health provider or system. Communication, expectations and knowledge were sources of disconnects between provider and patient that proved to be barriers to achieving PCC. Gender-concordant Care One of the most poignant preferences expressed by Iraqi women in the study in regards to the primary healthcare encounter was the need for female interpreters and female providers. Overwhelmingly, women articulated that a female provider was preferred because of being understood and feeling comfortable in the encounter. Most women emphasized this in regards to gynecological or female care. The inability of the Iraqi women to access and express the preference of a female provider is a cultural disconnect between the patient and health system. A majority of the women mentioned that the presence of a female provider and interpreter is a means of psychological comfort for them. Several of the women mentioned that having a male provider or interpreter in the healthcare visit is embarrassing. One participant explained about the health encounter, “…it has to be a female doctor. I can’t go to a male doctor. I will prefer a female doctor and not a male doctor, unless I don’t have another choice. But if there are options, I will certainly go with the female doctor.” A woman may not know how to express her need for a female provider. In contrast, some women specified their need for a female provider only for women’s problems while others felt that the physician as a professional was to be trusted regardless. In the same regard, most participants expressed preference for a female interpreter. As one woman explained, It [male interpreter] is not a problem for me, but if I have a gynecological condition then I will feel shy of him. In such a situation, I will need a female interpreter. If he was a male interpreter, I might not speak about my gynecological issues in his presence even if I do have one. 10 Preferences for gender-concordant care may vary between women and may be dependent on the reason for the health visit. From the statement above and others, gender discordant care appears to be a barrier to expressed needs being met in the healthcare encounter. Physical Comfort The participants described several aspects of physical comfort in the study that stem from the value of modesty and that overlap with gender-concordant care. Areas that may promote physical comfort (although emotional comfort may also be assumed in the situations) included being clothed in the visit, and avoiding the handshake of male providers. Women described the value of modesty as a repeated aspect of physical comfort. Several women explained how they adapted to the health visit in order to maintain their modesty. One woman explained. “I make sure not to wear thick clothes.” She did this so that if a male provider saw her, he could listen to her heart and lungs over her clothes and avoid exposure of her flesh. Several women in the study explained their perspective of wearing the hijab or headscarf. Almost unanimously, the women expressed that wearing the hijab was their choice; it is a part of their cultural and religious practice and it helped them feel more secure and comfortable. They also expressed various meanings behind wearing the hijab and included some assumptions. Women expressed that wearing the hijab was their identity. One participant stated, “That’s how they differentiate us.” Another woman conveyed the desire to keep her hijab on during surgery. When health care staff heeded this expressed desire, she explained that she felt respect and that she was able to maintain her physical comfort. 11 Although not discussed at length, some women pointed out that shaking hands with a male provider was not their preference. In regards to shaking hands, one woman referred to the moment when a male provider offers a handshake and explained, “…you don’t want to embarrass them and have that awkward moment then they should know that not everyone shakes hands.” Women pointed out that physical components of the visit can cause disconnect or maintain comfort. Many but not all sources of physical comfort stem from genderconcordant care. Emotional Support Participants explained that emotional support during the visit came from several sources. This included family and friends, sometimes interpreters and even at times, the healthcare provider. Many women referred to family and friends accompanying them to the health encounter. Key informants in the study confirmed that in Iraq, it is customary to have a close friend or family member accompany them to a health visit. Several women explained how the presence of family or friends during a health visit helped relieve anxiety and made them feel more comfortable. One woman expressed, “… being in the middle of your family, brothers and sisters will make you comfortable so that you would have forgotten the illness.” In contrast, the absence of family and friends can be a source of worry and suffering for the Iraqi women. One woman stated, “I go to visits with my Mom. It is better if someone else is with you.” Being far from extended family is an added stress for many of the participants. One woman expressed this by saying, “We are far from our 12 family. This constitutes a fear and a deep sorrow.” Women have expressed that the presence of family support is an important component in the health visit. The women described instances when the provider’s actions met their need for emotional comfort. One woman expressed, “The doctor comes in and he/she introduces him- or herself and they shake hands with me with a smiling face.” Another woman said, “Yeah, like they show they care [through] eye contact…or appropriate touch.” Many women gave examples of providers who demonstrated appropriate compassion and understanding, that made them feel more comfortable in the healthcare encounter. Several participants emphasized the need for emotional comfort, which two women expressed as psychological comfort. One woman explained, “We are refugees and we are in a foreign country and we are in need of psychological comfort… especially when we go to visit the doctor.” Several women expounded on the idea of psychological comfort and that it came from providers who were sensitive to the immigrant journey, and who acknowledged grief, depression and linguistic obstacles. The characteristics of effective providers conveyed encouragement, empathetic listening, asking appropriate questions and giving useful direction. Women also explained that a provider offered emotional comfort when accommodating their needs. For example, knowledgeable health providers adjusted medications to Ramadan, offered alternatives, provided gender-concordant care, worked hard to solve issues and respected, listened and responded to the individual patient. One woman described her provider, “…she is like these cool doctors that know what she is doing and you trust them.” Women’s comments made it clear that empathy and understanding were key parts of emotional comfort. 13 Difference in Health Encounter Expectations Health and healthcare expectations are formed within social and cultural contexts and develop from previous experiences (Penney, 2015). Both the woman and the provider confront the healthcare experience with a certain set of biases and expectations that can hinder or facilitate care. Conflicting expectations during the health care encounter or within the health system can be a source of frustration. One of the factors that creates the largest disconnects between female Iraqi patients and healthcare providers is the differences between the Iraqi and U.S. health systems and the expectations that come from those differences. The Iraqi health system is a nationalized system where every individual has access to basic health care (Salman & Resick, 2015). For primary care, the women arrive at a public hospital clinic and are seen in the order that they come in for a minimal fee. They expect to wait an hour or less to be seen. Once with the physician, they can address any number of issues that concern them and the visit has no time limits (Penney, 2015). Patients who are used to this type of health system tend to be unfamiliar with U.S. healthcare aspects such as long waits for scheduled care, calling to schedule appointments (Salman & Resick, 2015) and the limits on the number of medical concerns that can be addressed in a single visit. Many of the Iraqi women expressed frustration in having to wait for the provider after scheduling an appointment and had the expectation that the purpose of the specified time for the appointment was to eliminate the waiting time. The participants also revealed concerns about the amount of time that they were allotted for their primary care appointment, most women felt that the length of the appointments were inadequate to discuss all aspects of their healthcare needs. Some explained the expectation that if they 14 waited for a significant amount of time or showed up without an appointment, then they would have adequate time to address all of their concerns. One woman expressed this disconnect, I think it was hard for us to understand in the beginning but this is the rules, this is the United States rules that you have a certain amount of time and you can talk about only one complaint. Because this is different than our culture. Like when you go to the physician [in Iraq], he will take care of everything you have at that visit. Women also expressed the failed expectation of honoring the appointment time. When the provider failed to be on time or adjust their visit schedule, it created a disconnect for women and a feeling that it was unfair. One participant stated, What’s the point of scheduling an appointment? It is not meant to go and wait. If I was visiting without an appointment then it is OK to wait, but I’m scheduling my appointment a week ahead and I come to wait for an hour! Another woman pointed to this frustration by saying, “There is another issue. If we are late on our appointment by 5 minutes, they will cancel our appointment, but it is ok for them to let us wait for 1 hour.” Coordination of Care Coordination, timing and honoring of appointments are areas where expectations in the health encounter differ between Iraqi women and the health system. Women expressed that several aspects of coordination must flow smoothly (i.e., transportation, interpreter services) or else the long-awaited appointment may be delayed or cancelled. Coordinating interpretation services can thwart an appointment. One woman explained, “We had an appointment but the doctor was late because she was seeing another patient, and since the interpreter had other obligations, when my turn came, the interpreter was 15 not available.” The absence of an interpreter, adequate transportation, or tardiness by the provider all result in a lack of coordination and integration of care for the patient. Women also expressed surprise when they realized that they could only share two concerns in the visit. One of them explained, Usually people from the Middle East …tell their doctor all the issues, not only about their leg. One time I went for a headache and it hurt because I have a disc in my neck but she [physician] says, ‘we can only talk about your headache’ but I know it is related to my neck. Health system time limits were an unwelcome surprise and in opposition to their expectations. Time constraints also limited what the women could express during the visit, causing frustration with the provider and the health system. Communication An effective health visit does not exist without good communication. Encounters that exemplified mutual understanding and reciprocal communication were regarded as positive encounters, while misunderstanding within the healthcare encounter left the participants with feelings of frustration and distrust of the health system. Lack of clear communication not only creates a disconnect for Iraqi women but can also lead to misunderstanding, distrust and an incorrect diagnosis. Women expressed the importance of experiencing respect and understanding by the provider. Women pointed out that health encounters that exhibited mutual understanding and reciprocal communication exemplified positive encounters, while misunderstanding within the healthcare encounter left the participants with feelings of frustration and distrust of the health system. From the Iraqi female patient perspective, the disconnects in communication have serious repercussions. The fear of not being diagnosed correctly, being prescribed the wrong medications and not being understood 16 were all concerns of the women. The risk of important health information slipping through the cracks worried many of the participants; they saw this as a factor that adds to their suffering and exacerbates their health problems. One participant summed this up by saying, “Many women have a problem with the language. You can’t believe how much they suffer and for the most part it is because of the language.” Several women explained that their ability to communicate in English allowed them to be confident in their healthcare experience. Having the ability to describe their symptoms and ask questions was valued by the respondents. One woman with English proficiency explained what she had observed, “I think my situation could be different from others. Because I can speak English and I can manage myself so I didn’t have problems that other Iraqis face.” At times, using an interpreter was seen as a hindrance to communication and this was observed by women when the interpreter did not show up, or the woman felt that the interpreter was not doing an adequate job in communicating their concerns. At other times, a competent and respectful interpreter was regarded as an important tool to assist the woman. One participant explained that a characteristic of a good interpreter is “… the ability to explain everything assiduously and not withhold information…” Reciprocity, respect and transparency in the three-way partnership between the patient, interpreter and the provider are essential in mitigating misunderstanding and disconnects. The Iraqi women valued having autonomy and control over their healthcare experience and being an active partner in their care. Another unwelcomed expectation in the visit was the number of questions that health staff ask in the visit that are not perceived as being relevant to the reason for the 17 visit or are viewed as repetitive. When a provider or other staff member reviewed a medical history and asked many questions, some respondents viewed the questions as excessive and unnecessary. Other respondents rationalized that the many questions might be necessary while others felt the questions took up valuable time during the health visit. One woman explained, A good doctor is one that understands you don’t have to explain a lot to them… they understand where you come from and they know what you are talking about and don’t keep asking a lot of questions, stupid questions…they understand without having to ask so many questions. Another woman pointed out that the person putting the patient in a room asks questions that are repeated by the provider. She stated, “Maybe they [doctors] were too lazy to read.” Another participant expressed, “It [many questions] is not necessary, why?” The reason for questions and their repetition was not evident to the women and was somewhat unexpected. Provider Knowledge Women expressed various opinions about how important it was for their providers to know about Islamic customs. One important aspect of Islamic culture that potentially intersects with medical treatment is the annual month-long daytime fast called Ramadan. For most Muslims, oral and parenteral medications need to be taken in the evening hours when fasting ceases (Grindrod & Alsabbagh, 2017). Many Ramadan observers will choose to fast and not disclose this information to their healthcare provider, even though it might negatively affect their health and medical treatment (Grindrod & Alsabbagh, 2017). The respondents varied in whether or not they thought the disclosure of fasting was of significance to their healthcare provider. Some Iraqi women assumed that their 18 provider should know that since they are Muslim, they observe Ramadan and therefore fast during this time. One woman explained, “It happens that I visited the doctor while I was fasting so I told him that I can’t take the medicines at the usual times. They know that we are Muslims and that we fast.” Most women felt it was good if a provider knew about their customs, Ramadan in particular, because of the need to adjust medicines, while a few women felt providers did not need to concern themselves with religion and should stick to medicine. One woman welcomed the interest of provider’s inquiries about Islam and stated, “It is nice that some physicians know about our religion and culture. She [physician] knows about Ramadan and what we can eat…I feel comfortable visiting her. She understands me.” One woman describe lack of knowledge about Ramadan as possible source of misunderstanding between patient and provider, stating, “I think they [doctors] should ask and try to be aware of what a person needs culture-wise because you would want treatment to go well, to hope the patient and not give them another dilemma.” Participant’s opinions on what providers should know and how well they understood cultural issues varied. DISCUSSION The themes that emerged highlight disconnects or situations expressed by Iraqi Muslim women that represent a form of misinterpretation, miscommunication and differing expectations within the health encounter. Areas of disconnects are multifaceted. For example, poor communication was a component in many of the situations described. The discussion will focus on the sources of disconnects and their clinical implications for the health encounter relationship, and health outcomes. Values, Preferences and Needs 19 Participants clearly express the need for respect of their values and preferences in multiple ways. Gender concordant care and modesty are the main attributes they described. The lack of provider attention to these areas thwart the PCC goal of understanding and trust. Participants pointed out that they do not share their healthcare desires and goals completely when the gender of the provider or interpreter is male. Others (Vu, Azmat, Radejko & Padelo, 2016) have confirmed this finding, arguing that a lack of female providers for Muslim women leads to delayed care seeking and health disparities. Not only is gender discordant care a barrier to seeking care but it may also result in a patient withholding information she is not comfortable sharing in front of a male. Failure to share information about symptoms, for example, puts the provider at a disadvantage as critical information needed for a correct diagnosis, care decision, or patient education may be missing. Conversely, gender concordant care provides an avenue for open dialogue and trust. The need to adapt clothing to preserve modesty is not a barrier when the request for a female provider is fulfilled. Female Muslim patients will have a more effective health visits with female providers and interpreters. Providers will have a greater chance to develop trust if care is gender-concordant and they will not be at a disadvantage in making diagnoses and educating patients. In addition, providers need to familiarize themselves with their patients in order to adapt to their needs and to offer appropriate health guidance. Cultural competence is not only cultural awareness and sensitivity; it requires cultural knowledge, respect and most importantly the skills to provide care in cross-cultural situations (Brach & Fraser, 2000). Health provider willingness and ability to understand the patient and modify care to that individual can result in improvements in healthcare for the Iraqi woman. This finding 20 was supported by a study that confirmed the feeling of relief for the Muslim patient when they were not overcome with the burden of educating their provider about Islam during each healthcare encounter (Padela, Gunter, Killawi & Heisler, 2012). Since there are many motivations and cultural forces behind a patient’s healthcare preferences and needs, it is imperative that the healthcare provider spends time attempting to understand the patient’s social and cultural beliefs. The understanding of where differences originate can help members of the healthcare team conceptualize how to bridge the disconnects that arise in the encounter. Providers can improve their knowledge of the patient and her culture by having a conversation, listening, and improving their cultural sensitivity and knowledge of patient practices that may affect medical care. Communication and Coordination of Care Most of the participants attributed a significant source of problems with the health system to language barriers. This finding is consistent with the literature that affirms that the most significant health care barrier for Arab Americans is the language barrier, even for patients who have been in the United States for a significant amount of time and can speak English (Salman & Resick, 2015). A solution in bridging the communication disconnect is taking time to listen to the patient and educating her in the process and purpose of the medical treatment in the healthcare encounter. The interpreter is an important element in the healthcare encounter and should be used appropriately so the communication and education objectives of the healthcare encounter can be met. The absence of an interpreter, inadequate transportation, or tardiness of the provider all result in a lack of coordination and integration of care for the patient. This is likely to create feelings of frustration and mistrust for Iraqi women. Providers and 21 members of the healthcare team who are responsible for the coordination of the patient care can benefit from understanding the factors that go into ensuring a patient arrives to her appointment on time and is able to effectively communicate (via an interpreter) once she is there. A health system which strives to provide patient centered care should be aware of these issues and make adaptations to accommodate appointments so that they are accessible and comfortable for the patient. Health systems and their personnel need strong coordination and effective communication with vulnerable patients regarding their needs during the visit such as arranging for the use of an interpreter, and making accommodations for changes in the schedules of providers and interpreters. Physical and Emotional Support Many of the women expounded on the ideas of emotional and psychological comfort. Iraqi women explained that they were comfortable with providers who displayed sensitivity to the immigrant journey of grief, depression, and linguistic battles. These findings explain the underlying desire of the patient to be understood. It is important for the healthcare provider to recognize that the emotional components of communication, such as how feeling understood may promote trust and motivation to adhere to the prescribed healthcare treatment while contributing strongly to patient comfort (Epstein & Street, 2011). The PCC dimension of providing emotional support has direct correlations to the other dimensions with the overarching goal to relieve fear and anxiety and create trust in the health system. CONCLUSION Iraqi Muslim women are an understudied patient population and are vulnerable as an underserved minority within the U.S. health system. Provider awareness of the need to 22 adapt PCC to Iraqi Muslim women during the health encounter can result in increased feelings of mutual respect, understanding, and comfort for this patient population. In contrast, persistent disconnects resulting from lack of cultural awareness during the health encounter may lead to negative consequences for the Iraqi women including mistrust, cultural distress, and compromised quality of care. The risk for health disconnects is seemingly greatest when the Iraqi women do not understand the U.S. health system or have barriers communicating their health needs and preferences. The patient and the provider have different perspectives in regards to the health encounter and reciprocal education can help bridge these disconnects. Culturally sensitive healthcare accommodations and knowledgeable provision of patient-centered care to Iraqi women can lead to outcomes such as better understanding and increased engagement in care. The findings of this study suggest that provider awareness of patient expectations and cultural norms related to health practices can help other vulnerable populations, especially ones who are new to navigating the U.S. healthcare system. These findings also call for more data and studies to demonstrate health perceptions and expectations from the perspective of diverse populations. Additional work is needed to promote reciprocal communication between patients and providers, allowing for reciprocal education about perspectives and expectations, with the hope of overcoming these disconnects to promote more connected and patient-centered care. 23 REFERENCES Arab American Institute. (2019) Census Information Center. Retrieved from https://www.aaiusa.org/census_information_center Barnes, A. E. (2009). New issues in refugee research: Realizing protection space of Iraqi refugees: UNHCR in Syria, Jordan and Lebanon (Research Paper No. 167). 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