Abstract
Utilizing a hermeneutic philosophical approach, the researchers explored the perceptions and experiences of people who are homeless in Mobile, Alabama, receiving health care and interacting with health care providers. Using the voice of the participants, discussions among the researchers, and supporting literature reinforcing key concepts, a framework was created illustrating the lived experience. The following themes were identified: social determinants of health, compromised systems, professionalism, dehumanization, engagement, and downward trajectory. The experiences described and themes identified indicate a breakdown in therapeutic relationships between homeless individuals and health care providers, contributing to the continuing destabilization common in this population.
Keywords
People who are homeless are often socially isolated and may have experienced rejection and/or discrimination from their family, communities, and institutional authority figures, including health care providers (Flaskerud & Strehlow, 2008; Irestig, Burström, Wessel, & Lynöe, 2010; Ramsay, Hossain, Moore, Milo, & Brown, 2019; Wen, Hudak, & Hwang, 2007). Frequent rejection from family and society creates a sense of shared social identities between those experiencing homelessness, as well as long-lasting impressions of rejection (Maniglio, 2009; Skosireva et al., 2014). It also intensifies mistrust of others, including those in positions of authority such as health care providers. This can lead to ambivalence and resistance to change health behaviors or seek self-sufficiency, contributing to a diminished well-being and prolonged or chronic homelessness (Byrne et al., 2017; Prochaska, Wright, & Velicer, 2008).
Poor health is closely associated with homelessness, with high rates of both chronic and acute health problems such as pneumonia, tuberculosis, hepatitis C, cardiovascular disease, cancer, diabetes, HIV/AIDS, asthma, and obesity (Beijer, Wolf, & Fazel, 2012; Jones et al., 2009; Lebrun-Harris et al., 2013; Schanzer, Dominguez, Shrout, & Caton, 2007; Wiersma et al., 2010). The complexity of the health issues combined with the barriers to health care often experienced by those who are homeless has resulted in higher morbidity and mortality rates than in the general population, including homelessness as an independent risk factor for death (Metraux, Eng, Bainbridge, & Culhane, 2011; Morrison, 2009). Persons who are homeless also experience unmet health care needs because of an inability or delays in getting care, resulting in more frequent use of hospital emergency departments (EDs) than housed patients, increasing the cost of health care for all and further burdening health systems (Hwang et al., 2013; Tadros, Layman, Brewer, & Davis, 2016).
The phenomenon of those who are homeless seeking out EDs and hospitals as a source of food and shelter frequently leads to an antagonistic relationship between health care providers and ED “frequent fliers.” Nontherapeutic relationships arising from these suboptimal conditions alienate a disenfranchised population and contribute to health care provider stress and professional burnout (Fine, Zhang, & Hwang, 2013; Whitley, 2013). Health care providers not placing the patient/family in the center of all health care activities are less likely to provide a caring and healing environment when delivering care to patients; furthermore, they demonstrate poor leadership skills and professional behaviors that hinder teamwork and lead to poorer patient health outcomes (Koloroutis et al., 2004).
Leaders should be prepared to systematically guide their constituents through the known future as well as be prepared for the unknown that is certain to be complex (Podger, 2004). Leaders with resilience and emotional intelligence are needed to develop pathways to overcome barriers faced by disenfranchised patient populations. The complexity of social and health determinants that contributes to homelessness requires both government and nongovernment systems to collaborate with health care systems to develop partnerships that promote health care effectively and efficiently by developing infrastructures that focus on the whole individual (Jia, Moriarty, & Kanarek, 2009; Kjellstrom et al., 2007). These collaborations will exert strong influences on the social determinants of poverty, education, employment, and environment, improving both physical and mental health while reducing morbidity and mortality rates for all people (World Health Organization, 2008).
The increasing complexity of health care in the 21st century is reflected in systems unable to meet the needs of a diverse population. Health care professionals continue to experience high levels of burnout, which can lead to medical errors, malpractice suits, dysfunctional health care teams, depression, and even suicidality (Fine et al., 2013; Plesk & Greenhalgh, 2001; Shanafelt et al., 2015). Increasing attention is being paid to racial and ethnic disparities in health care, with the expectation that health systems, including academic health centers, apply targeted strategies to address these inequities in patient care, education, and research (Betancourt & Maina, 2004). Many institutions and health systems attempt to solve these complex problems with traditional approaches that only contribute more chaos and frustration, thus contributing to a “wicked problem” (Conklin, 2005).
Purpose of Study and Setting
The researchers sought to explore the perceptions of health care experiences by people who are homeless in Mobile, Alabama, while also considering their own thoughts and beliefs regarding the interviews. The study was conducted in a homeless day shelter located in downtown Mobile. An interprofessional nurse-managed health and wellness clinic established by the University of South Alabama’s (USA) College of Nursing in 2010 was available to homeless guests within the day shelter. During clinic visits, guests reported troubling encounters with health care providers, who frequently minimized or rejected their health care needs. A deeper understanding of the perceptions of those who are homeless and their experiences accessing health care services can better prepare providers to engage with a vulnerable and often challenging patient population in a mutually productive manner.
Method
Gadamer’s hermeneutic philosophy guided this research project. Three significant underpinnings of Gadamer’s philosophical hermeneutics include reflexivity, dialogue, and interpretation. Language and behavior are inseparable from “being-in-the-world,” and the ability of hermeneutical researchers is the awareness and skill to see what is questionable and to understand the interconnectedness between humans (Gadamer, 1976). Hermeneutic philosophy recognizes the human experience is inseparable from the world in which the participant lives (Crist & Tanner, 2003). The participants’ backgrounds and lived experiences help researchers understand the participants’ experience of being in the world (Laverty, 2003). Researchers explore the lived experience by inquiry through dialogue, which may lead to more ambiguity but allows for a broader interpretation of human thinking and actions (Kinsella, 2006). Hermeneutic philosophy can also be considered a practice as the researcher’s understanding from dialogue and discovery allows for a deeper understanding of the relationship between phenomena (McCaffrey, Raffin-Bouchal, & Moules, 2012).
Philosophers have pondered whether hermeneutics can differentiate text to be true or false or should human action be viewed only as a physical phenomenon (Mantzavinos, 2016). However, the goal of hermeneutic philosophy is not to determine the truth with research. Researchers are hearing the participant’s perception or understanding of their lived experience, and the researcher may not be told the entire story. The researchers must think, discuss, and question to understand the lived experiences of others, knowing they may not completely understand because human behavior is predictably complex. Furthermore, hermeneutic researchers often struggle with stories or data, attempting to grasp what was missed and questioning whether they were able to create insight as opposed to more questions because of the research (Smythe, Ironside, Sims, Swenson, & Spence, 2008).
Philosophical hermeneutic researchers need to be aware of their own distinctive characteristics as they engage with study participants and interpret the data (Dilthey & Jameson, 1972). Interpretation is a collaboration between a researcher and participant that is informed by tradition, culture, and experience (Tan, Wilson, & Olver, 2009). Therefore, when hermeneutic researchers listen to participant stories, they attempt to keep their own lived experiences in the background. Moreover, researchers are expected to be transparent about their backgrounds and any preconceived ideas or knowledge that may influence the research topic (Crowther, Ironside, Spence, & Smythe, 2017).
The researchers of this study were aware of previous experiences that could affect their interpretation of the interviews conducted, including having worked with homeless individuals in a health and wellness clinic for several years. Postinterview dialogues between the researchers were used to process and discuss their thoughts, feelings, and beliefs regarding the interviews. Two researchers conducted 16 interviews, with one lost due to technological issues. Two participants (male and female) were eliminated due to an inability to coherently answer the study questions attributed to mental health issues. The study was approved through the Institutional Review Board (IRB) at the University of South Alabama (Board Referral #11-323) in 2012.
Recruitment and Participant Demographics
Using purposeful sampling, homeless guests at the day shelter were invited to participate if they had an experience with health care providers they were willing to share. A flyer was posted at the day shelter in several locations for participants to read, and the researchers also invited day shelter members to be interviewed during breaks in conducting the interviews. Inclusion criteria were being able to speak/understand English and having the ability to recall personal health care experiences as a homeless person, and being 18 years of age or older. No person was excluded due to race, religion, health status, or gender, but they did have to be homeless and a member of the homeless day shelter. There were no incentives for participating in the study and signed informed consents were obtained.
A larger number of males (73%) than females (24%) were represented in the study. More than 60% of the participants were Caucasian (67%), and the remainder African American (33%). Participants’ average age was 48 years, with more than 50% in the 51- to 61-year age range and only one participant above 62 years of age. Almost half of the study participants met the criteria for “chronic homelessness,” having reported homelessness for more than 12 months, and the other participants reported being homeless for more than 2 months. Most study participants reported having no health insurance, with 75% reporting no benefits, whereas 20% had Medicare/Medicaid and 5% had Veterans aid. Forty percent of the participants had lived in Mobile “all their lives,” with most leaving the city for brief periods of time and moving to surrounding areas.
Interviews
The following guided the semi-structured interviews:
Tell me a story about an experience with receiving health care.
How are you affected by health care provider communication?
The interviews lasted between 15 and 60 minutes and were recorded and transcribed. Immediately following the interview, the two researchers conducting the interviews recorded their reflections and perceptions and began to sketch ideas of the guest’s perceptions. The researchers considered this as another data form referred to as researcher reflection, journaling, or memoing (Creswell, 2012). Interviews were terminated by the research team when participant’s experiences continued to reflect similar thoughts and feelings that implied research saturation.
Interpretive Process
The researchers included two nurses: a psychiatric and nurse administrator and a biomedical librarian. The three researchers conducting the study reviewed the transcripts independently and as a research team, using an interpretative process to understand the meanings of the interviews and did not bracket their own perceptions. Using a hermeneutic interpretive process, the research team recognized the significance of “to be” in the world as it related to both the research team and the participants (Crist & Tanner, 2003; Dilthey & Jameson, 1972; Draucker, 1999). The research team held assumptions that would be discovered during the study, such as health care provider’s lack of care for those who are homeless. Acknowledging the research team’s assumptions of the phenomena begins the hermeneutic circle, with the interpretation of the data bringing the process to a full circle. Hermeneutic interpretation is overlapping, not linear (Crist & Tanner, 2003; Mantzavinos, 2016).
The study approach incorporated five related steps: (a) transcript review and evaluation of the interview process; (b) identification of concerns, themes, meaning of experiences; (c) identification of shared meanings or patterns; (d) final interpretations; and (e) dissemination of the interpretations (Gomez, Ryan, Norton, Jones, & Galán-Cisneros, 2015). Emergent themes were identified from the data, defined, and reported through an iterative process of theme development. Robust data analysis strategies employed were as follows: sketching ideas; taking notes from the independent reviews and team discussion, summarizing all; working with words and passages; identifying and crystalizing codes; counting frequency of codes; relating categories to an analytic framework in the literature; and creating a framework (Miles, Huberman, & Saldaña, 2013). Qualitative validity and reliability were addressed through several strategies that include using rich, thick descriptions to convey the findings; clarifying the bias of the researchers; presenting discrepant information; and debriefing by peers. Qualitative particularity focused on specific descriptions and themes developed in context of the unique study site (Creswell, 2012).
Themes
The participants’ voice guided the development of the framework, along with discussions among the researchers and supporting literature that reinforced key concepts. The use of supporting literature helps to illuminate, widen, and provide a depth of understanding to the themes identified by the researchers based on the lived experience of the study participants (Lindseth & Norberg, 2004). The themes identified were social determinants of health (SDH), compromised systems, professionalism, dehumanization, engagement, and downward trajectory. Figure 1 represents the themes as a funnel intended to illustrate how the broader themes of SDH and compromised systems may have contributed to the participants’ descent into instability and eventual homelessness. The influence of each health care encounter and the providers’ communication are represented by the categories of professionalism, dehumanization, and engagement, with professionalism and engagement having the potential for a positive or negative influence on the participants. Downward trajectory is the narrowest and last part of the funnel and illustrates how some of the study participants were entrenched in circumstances and behavior that contribute to further instability and chronic homelessness.
Marginalized patient experiences.
SDH
Homelessness is the result of multiple adverse social and economic conditions, and, when considering SDH, is a key driver of health inequality (Stafford & Wood, 2017). Subthemes related to the SDH identified in this study were lack of housing and employment opportunities, inadequate psychosocial support, and barriers to health care. The influence of “place” has been explored when looking at the socioeconomic impact on health care and includes conditions in social, economic, and physical environments such as in school, church, workplace, neighborhood, or other settings (Gornick, 2002). Resources such as safe and affordable housing, access to education and healthy food, public safety, local emergency and health care services including palliative care and end-of-life services, and an environment free of damaging toxins play significant roles in health outcomes (Shulman et al., 2018). The city of Mobile does have Housing First, Inc., a nonprofit organization that serves homeless individuals, families, and veterans through street outreach, housing, and temporary financial assistance. The Mobile Housing Board has Section 8 to assist with low-income housing, but the waiting list is currently closed. The high rate of chronic homelessness among the study participants indicates that significant barriers exist in securing affordable housing. Not being able to obtain affordable housing leaves the homeless person socially isolated and connecting primarily with other homeless people who are socially isolated and struggling “to be” a part of society and accepted as “being-in-the-world.”
Multiple participants indicated that health issues were prohibiting them from securing and/or sustaining employment, including one individual who had experienced an on-the-job back injury while working as a temporary employee. Morbid obesity, diabetes/hypertension, schizoaffective disorder, substance abuse, psychosis, posttraumatic stress disorder (PTSD), and borderline personality disorder were all self-reported conditions that contributed to the participants’ lack of stability. The high number of chronically homeless participants who were lifelong residents of Mobile County indicates that psychosocial support systems had eroded and family and community support was lacking. The lack of support could be a result of the serious mental illnesses and substance abuse reported by participants, as compassion fatigue on the part of family, friends, providers, and the community at large is a not uncommon phenomenon when dealing with traumatized persons or those who are homeless (Adams, Boscarino, & Figley, 2006; Clifford & Piston, 2017).
The participants described examples of barriers to receiving health care, including one instance of an apparent Emergency Medical Treatment and Labor Act (EMTALA) violation. EMTALA is a federal statute, which governs when and how a patient may be (a) refused treatment or (b) transferred from one hospital to another when he or she is in an unstable medical condition, and a hospital that negligently violates the statute may be subject to a civil penalty of up to US$50,000 (Centers for Medicare & Medicaid Services, 2012). Independent verification of the events that led to the apparent EMTALA violation described by the participant was available, as the nurse–manager of the USA health and wellness clinic at the day shelter was alerted of a medical emergency with a female in apparent distress. Upon assessment, the nurse–manager determined that emergent care was required and an ambulance was called. Emergency medical technicians (EMTs) verified that the homeless female patient was having a heart attack and transported her to the nearest ED: Researcher: I remember very clearly that day in the bathroom, because I wasn’t sure she was even going to make it to the emergency room, and the EMTs, they were all big eyed, trying to get her out as quickly as they could.
Not long afterward, the day shelter receptionist informed the nurse–manager that she was going to the ED to pick up the patient with a heart attack and take her to another ED: Participant: I went to the hospital and the doctor refused to treat me. He walked in and said “Not you, I’m not treating you, go home.” My chest was hurting real bad . . . and had me banned from the hospital. He did it because I am homeless. I called the receptionist here, to come get me and take me to another hospital, and they put me in the hospital that night. They said that on the heart monitor I was having straight-line like A’z and then squiggly lines, something like palpitations. So, they admitted me for two days.
Postinterview Researchers’ Reflections/Discussion
Researcher: That sounds like medical malpractice. Am I wrong? Researcher: No, that’s medical malpractice. He did not even look at her, could not have looked at any of her documentation, but to tell her “you come here too much, get out, you’re banned.” If she had a heart attack on their property, he personally would have been responsible . . . Researcher: I’m shocked too. It makes you wonder if he has decided he will personally not treat the homeless, if he has taken this stance “I’m not gonna,” because it wasn’t even an issue of her not being insured, she has insurance . . . so there’s no financial reason to not treat her. It sounds like he’s taken a stance, and I’m basing that on what she said about the other woman from the women’s shelter who was sent there the next night, and he refused to treat her as well. So, I don’t know how you can get away with that, but he apparently feels like he can, and has.
Compromised Systems
Compromised systems reflect the complexity and current changing models of health care, as well as the nuances of delivery, coordinated care, and available resources for services. Subthemes from compromised systems identified in this study include former institutionalization, insurance status, community infrastructure, and interagency competition for resources. Diverse mental health concerns were identified by participants, who often described multiple diagnoses they had received. Being institutionalized in a mental health system or incarcerated does not provide significant preparation for dealing with the realities of meeting social needs to remain stable once released back into mainstream society, and indeed, incarceration and homelessness are mutual risk factors for each other (Greenberg & Rosenheck, 2008; Metraux, Roman, & Cho, 2007). Unable to navigate complex systems requiring referrals, a general lack of support, and limited social skills put many of the participants at further risk of a downward trajectory into increasingly intractable economic, emotional, and physical instability: Participant: When I went back they said Mr. you don’t have insurance, we already told you what it was, and we aren’t going to see you;
Insurance status is a major barrier in accessing systems that are not “open” to those who are homeless, but as illustrated with the patient experiencing a heart attack, having insurance did not guarantee treatment or consistent care. Health care agencies available to those who are homeless in our community include Health Care for the Homeless (HCH) and a mental health center. HCH is a federally qualified health center (FQHC) providing primary care and other services for those qualifying as homeless or who are at risk of being homeless (“Franklin Primary Health Center,” 2017). The community mental health center receives funding through the Project for Assistance in Transition From Homelessness (PATH) grant through Substance Abuse and Mental Health Services Administration (SAMHSA), with a focus on treating those who are homeless experiencing serious mental illnesses. Funding for this program provides outreach, screening, diagnostic treatment, rehabilitation, housing, substance use treatment, referrals for primary health care, and job training (SAMHSA, 2016).
Despite access to available resources, participants shared experiences that were reflective of provider bias and lack of advocacy. The extent to which systems can create infrastructure capable of assuring equitable care was perceived by participants as essentially lacking or nonexistent, possibly related to interagency competition for limited resources and providers assuming the role of “gatekeeper” of resources. This phenomenon became increasingly apparent in Mobile, Alabama, during funding cuts from the U.S. Office of Housing and Urban Development (HUD) due to the restructuring of their financial model and when the city reduced funding to social agencies during budget restructuring, all within the last 5 years (“Chart Book,” 2016). Funding cuts for HUD programs continue, with the fiscal year 2018 budget released by the White House calling for a US$6.8 billion cut for affordable housing programs (Layfield, 2017). Cohesiveness and collaboration among community agencies that work with the poor and homeless have suffered as competition for scarce resources intensifies (“Sudden funding cuts leave some homeless programs scrambling,” 2016): Researcher: Are you aware of Healthcare for the Homeless? Participant: She can’t do anything because there’s no doctors who deal with the homeless around here. Even she’s getting frustrated because she can’t refer me to someone like a gastroenterologist because they will not take me unless I have at least $185 upfront. It’s pretty much a crapshoot right now.
Professionalism
There are four principles of health care ethics that can provide practitioners with guidelines for making decisions when they inevitably face complicated situations involving patients: autonomy, beneficence, nonmaleficence, and justice (Beauchamp & Childress, 2008). These principles are reflected in health profession standards with perhaps the most famous being the Hippocratic Oath, one of the oldest binding documents in history and still widely used in health science graduation ceremonies. These standards also establish an ethical framework by which the public can hold the individual clinician accountable. Health care providers’ social identity and responsibilities are often tied to their professional standards and code of ethics. The relevancy of these concepts as they relate to health care is in question in light of widely reported lapses in relation to marginalized patient populations. One study concluded that it is implicit values, as opposed to officially accepted ethical principles, that determine the attitudes of health care providers and contribute to the poor treatment that some patients experience (Irestig et al., 2010). Subthemes of ethics, communication, advocacy, social responsibility, and social identity were described by the participants and fall under the overarching themes of professionalism. Many of the participants’ experiences with health care in our community indicate serious lapses in provider ethical behavior: Participant: So they admitted me and the intern that came in the following morning he just flat out told me that in no certain terms that he wasn’t going to keep me in the hospital or do anything about it because I was homeless and all homeless are the same, just a bunch of junkies and drunks looking out for a fix. And for me to come back when I had insurance and a residence and they would find out why I was bleeding and having abdominal pain. And until then get the hell out. Those were his words. And like okay. Researcher: And how did that make you feel? Participant: Hurt, frustrated, angry, because I thought he took a Hippocratic oath and he blew it. That night completely.
The participant clearly had an expectation of the health provider, which was disparate from their actual experience. References to being disrespected, dismissed, and objectified were reported by participants when providers communicated with them in both clinic and ED visits. Participants tried to make sense of these negative experiences during the interview, often blaming it on a lack of resources within the health care system or on their being stereotyped as drug seeking and “frequent flyers.” Although there were pockets of positive experiences, particularly from social workers, most of the participants did not believe they mattered to providers.
Postinterview Researchers’ Reflections/Discussion
Researcher: The doctor wrote the prescription, the nurse brought it out but then said “the doctor has decided not to give you this because he’s afraid you will sell it on the street.” At least that’s how he relayed it. So, what’s amazing to me is that they are actually communicating these things to the homeless. They could basically just say “you know what, we made a mistake, you don’t need this prescription.” But they’re giving very detailed reasons that are contemptuous and “this is what we think of you and this is why we’re not going to do it” and they don’t really care.
Health care providers are practicing in challenging times, with unprecedented changes in the health care system affecting care in all practice settings. The challenges are many, from the uncertainty of the direction of health care reform to requirements from regulatory agencies to improve quality and patient safety. Implementing electronic health records and other advanced technologies often consume more time and resources than expected and bring more complexity to the multiple responsibilities providers shoulder on a daily basis. Many hospitals are facing significant financial challenges and a growing number have resorted to filing for bankruptcy, with 27 health care organizations having declared in 2017 (Ellison, 2017). Resource allocation decisions and the challenges they bring to the health care work environment may contribute to the perception of the study participants that health care providers are hardened to their feelings and life circumstances.
Dehumanization
Dehumanization has been described in many ways, including animalistic dehumanization, where a person is denied the humanly unique qualities and instead viewed as lacking culture, morals, and self-restraint; being coarse; acting irrationally or out of instinct; and being childlike (Haslam, Bain, Douge, Lee, & Bastian, 2005). Mechanistic dehumanization, however, involves the objectifying denial of essentially human attributes to people toward whom the person feels psychologically distant and socially unrelated (Haslam, 2006). Examples of both forms of dehumanization were evident in the interactions that the study participants experienced with health care providers, including subthemes of stereotyping, objectification, groupthink, and bias: Participant: I mean that is a tough situation to be in when you don’t have the proper resources or money and people say he is just a statistic we’re gonna push him through the system. And I don’t feel that is fair to nobody. Especially when it comes to their health. Participant: I had passed out and they said my lungs were fluctuating like this. And when I got to the hospital and checked in and worked on and at the end of the visit I was told I didn’t warrant being checked in because I was homeless. And I was told the doctor wrote out a prescription but they did not give it to me because they were afraid I was going to sell it on the streets.
The following have been identified as contributors to the dehumanization of patients from the realm of medicine: lack of personal care and emotional support; reliance on technology; lack of touch and human warmth; emphasis on instrumental efficiency and standardization, to the neglect of the patient’s individuality; related neglect of the patient’s subjective experience in favor of objective, technologically mediated information; and the emphasis on interventions performed on a passive individual whose agency and autonomy are neglected (Haslam, 2006). Participants repeatedly shared stories of being stereotyped and treated “less than human” and were often stunned by the blatant disregard shown for their feelings and vulnerable conditions: Participant: I was on the floor, throwing up. I had a bag and was still vomiting, and one lady said this girl out here is really sick and needs some help. A nurse came out there and snatched me up and said get up, just get up and I was still vomiting, and to this day for the life of me I don’t understand why I was treated this way.
Some participants reported they responded in kind, often defending themselves against being completely disregarded and denied treatment. In some instances, participants described being helpless to respond and, when “banned” from services, had no recourse but to leave the health care setting.
Some participants described being treated kindly by providers who were attentive. Being treated kindly often appeared to be a surprise to participants, who were possibly expecting to be treated differently. Cornerstones to being socialized as a health care provider have traditionally been compassionate care, empathy, and person-focused care. When caring behaviors were demonstrated by health care providers, participants responded positively: Participant: For once, I was actually treated like a human being. They actually cared. They let me talk instead of criticizing me. Participant: I’ve been pretty lucky with my diabetes because it has been well explained. I also have high blood pressure, but I’m thankful that everything has been explained pretty well. Even when I didn’t have insurance I was able to go to a non-VA doctor. The VA has done a good job in letting me know what can happen with diabetes and how to take care of it.
Postinterview Researchers’ Reflections/Discussion
Researcher: What stood out for me in his account is that he has a relationship with his provider, in a sense. At least in his mind, he has a good relationship with his provider, and it’s been one of those that started before he was homeless and continued after he was homeless, which was similar to another interview we had. Researcher: Right. And even though he’s not seeing those doctors he likes to keep them in the loop. Researcher: Yeah, which is proactive behavior on his part, staying on top of the chronic conditions he has. But it was good to hear that he’s had positive experiences there.
Engagement
Engagement can be described both from the health care provider and participant perspectives, underscoring the essence of skillful communication, therapeutic relationships, shared decision making, and person-focused interaction. The concepts of “patient engagement” and “patient activation” have become prominent in the health care literature, including multiple models, frameworks, and practices to increase engagement (Carman et al., 2013; Coulter & Ellins, 2007). Patient engagement is a concept that combines interventions designed to increase activation and promote positive patient behaviors such as self-care management, and is one way to achieve the “triple aim” of improved health outcomes, better care delivery, and greater efficiency. Engagement subthemes identified by the participants include health care providers’ lack of cultural competency regarding the culture of homelessness, the resilience of those experiencing homelessness, empowerment, and having a voice.
Although the participants overwhelmingly shared that providers tended to communicate in a detached and often inhumane manner, some shared positive experiences with providers who demonstrated engagement by asking good questions, paying attention, and being responsive: Participant: She gave me all the information I ever cared to ask for. She made me feel comfortable with the decision I was making. And let me know that I was a real person. Today I still think of that. Participant: Well me and the doctor we talked and physical therapy they wanted to help me but the resources weren’t there and that was what I got from the doctor they was really going to bat for me but the financial resources and their hands were tied.
Cultural competency has been defined as “the ability of providers and organizations to effectively deliver healthcare services that meet the social, cultural, and linguistic needs of patients” (Betancourt, Green, & Carrillo, 2002). Typically, attributions such as gender, race, ethnicity, religious beliefs, and language are priority areas in cultural competency, whereas people in other categories such as those experiencing homelessness, mental illness, substance abuse, and those in the lesbian, gay, bisexual, and transgender (LGBT) community, and other marginalized groups may not receive as much focus on their cultural identity. Study participants described encounters with health care providers that indicated a lack of awareness regarding the complex issues that contribute to homelessness: Participant: I told the doctor when he tried to discharge me that I didn’t have anywhere to go, and I guess the doctor didn’t care because he was like you have to go. That was the feeling I was getting from the doctor that he did not care. I don’t care where you go when you go but you got to go. I couldn’t believe that they made me leave because I just had the surgery yesterday. I was afraid that I was going to get some kind of infection going out there into the world because it was still fresh. I was afraid if something happened to me that it was on y’all because you’re sending me into the streets and I’m not healed yet. My body is not ready, I can’t walk and I can’t get around. You know I’m homeless and I’m laying out there in the streets. If some bug gets up in there and I start getting some kind of infection I feel that that’s on y’all, for sending me out of the hospital into the streets. I have nowhere to go. I feel like that is on the hospital, or the doctors or whoever that goes on. It’s wrong for people to be discharged when they’re not ready to be discharged. If I knew I was going to have the surgery and then be discharged the next day, I would have never had the surgery.
Postinterview Researchers’ Reflections/Discussion
Researcher: The comment by the physician “that’s a social issue, and we don’t deal with social issues here at the hospital.” Researcher: Or that the physician does not deal with social issues, is what I took from that, because he was trying to talk to the physician, saying “but I don’t have anywhere to go,” and the physician was basically saying “that’s a social issue, that’s not something I’m going to be able to help you with or that I deal with,” or whatever.
Health science curriculums include cultural competency; however, the scope is usually broad and may not include specifics that address vulnerable or marginalized populations such as those experiencing homelessness. Students may have opportunities to work with diverse patient populations during clinical immersion experiences such as health fairs, student-run free clinics, practicums with community partners, and international clinical projects. These experiences have the potential to bring about an awareness of health care disparities and SDH and to personalize those who are often labeled as “difficult” patient populations. However, the accounts from this study indicate a high level of negative interactions with health care providers that reflect insensitive, unprofessional, and disrespectful behavior toward homeless patients seeking care. These negative interactions can have lasting impact on future health behavior, as patients may delay seeking care due to perceived cultural insensitivity and are concerned that they will receive a lower quality of care (Kripalani, Bussey-Jones, Katz, & Genao, 2006): Participant: When you look at the homeless or think about the homeless some people’s reactions will be they’re just an addict they spend all their money. I have heard this so much, she’s just an addict so it really doesn’t matter.
Some participants relayed examples of resilience, empowerment, and having a voice in the face of discrimination, denial of care, and disrespectful behavior from providers. On occasion, this took the form of rebuking the provider when they talked disrespectfully to them or reminding them of their professional identity: Participant: . . . and they had a bad way of talking to you. She talked real rough. I don’t like people talking to me like that, I am a human being just like you. I told her that I was not a child or something like that or not an animal or something like that. Now, I’ve seen them talk like that to others just like me.
Downward Trajectory
Trajectory as a theme in this context refers to an object’s path as a result of external forces, which contribute to negative outcomes. Downward trajectory’s subthemes were hopelessness, learned helplessness, survival mode, and opting out. Several participants reported feelings of hopelessness and dejection over their circumstances and their perceived inability to alter events. Learned helplessness is when a person believes that they have no control over and cannot influence the events that shape their life, and this mind-set can lead to depression. The negative experiences that many have experienced both before and during their times of homelessness can lead to passive behaviors that keep the person feeling “stuck,” even if there are options available to them that could potentially improve their life situation. If a person feels powerless over traumatic events in their past, they may begin to believe they also have no power to change their life now and in the future (Peterson, Maier, & Seligman, 1995): Participant: I would say like depression. A lot of things I’ve just been trying to reach forward, I’ve been trying to reach forward by going the right way to do it but I keep getting disappointed. Really outrages me it seems like times when I was doing things the wrong way it was all good. And now that I’m trying to do things the right way I keep getting hit in the face and it’s just the worst.
Those experiencing homelessness have often experienced traumatic events that were beyond their control, including neglect and sexual abuse as children, placement in the foster care system, domestic abuse and interpersonal violence, and further victimization while living on the street, which can reinforce these feelings of helplessness (Gomez et al., 2015; Hudson, 2005). There are high rates of PTSD among the homeless due to the complex trauma they have experienced during their lifetime, and not just primarily among the homeless veteran population (Deck & Platt, 2015; Kim, Bender, Ferguson, Begun, & DiNitto, 2018). The high rates of mental illness among the homeless raise questions: Does mental illness contribute to being homeless or does being homeless lead to mental illness? There is research to support both scenarios, with studies that have investigated homelessness as a risk factor for trauma (Deck & Platt, 2015) and others that have documented how trauma precedes homelessness (Taylor & Sharpe, 2008).
One of the study participants was in a downward trajectory triggered by circumstances beyond his control, in this case, within the context of seeking health care for a chronic condition: Participant: The ER took me in and did a CAT scan and diagnosed it as acute arthritis. I went back 6 or 7 weeks later and they told me “Mr. we are not going to see you because you do not have insurance.” I went out to arrange for a ride and the walker went out from underneath me and when it did I fell on that hip and heard it pop. Next thing I know is I wake up all cotton-mouth and they had removed my hip and put a spacer there. I couldn’t believe that they made me leave because I just had the surgery yesterday. I was afraid that I was going to get some kind of infection going out there into the world because it was still fresh. I was afraid if something happened to me that it was on y’all because you’re sending me into the streets and I’m not healed yet. My body is not ready, I can’t walk, I can’t get around, you know I’m homeless and I’m laying out there in the streets. Bug gets up in there and I start getting some kind of infection, I feel that that’s on y’all. For sending me out of the hospital into the streets. I have nowhere to go.
Scheduled for hip replacement surgery, the participant lived on the streets for several weeks with a spacer in his hip and only a wheelchair to get around with. He was in a relatively positive frame of mind during the study interview process and described his gratitude toward a woman he encountered who allowed him to sleep in her car at night so that he would not have to sleep out in the open. Subsequent clinic visits showed a decline in resilience and mental health, with the researchers’ last encounter with him showing an angry, inebriated man who railed against the injustices he had experienced at the hands of society.
Discussion
A wicked problem is a social or cultural problem that is difficult or impossible to solve for as many as four reasons: incomplete or contradictory knowledge, the number of people and opinions involved, the large economic burden, and the interconnected nature of these problems with other problems. (Kolko, 2012, p. 10)
The concept of wicked problems was originally developed by Horst Rittel and Melvin Webber (Rittel & Webber, 1973), who identified some common issues in regard to complex social issues: They have no definitive formulation and it may be hard or even impossible to define success with them, as they bleed into one another. Approaches to wicked problems should be tractable ways to improve a situation rather than solve it; a template approach will not work with wicked problems, although history can inform the process. There is always more than one explanation for a wicked problem; every wicked problem is a symptom of another problem, and consequently, approaches to improve one wicked problem will affect another one. Definitive scientific tests do not work with wicked problem mitigation strategies, and every wicked problem is unique. Indeed, homelessness is an example of a wicked problem with social, economic, cultural, political, physical, and environmental issues that lead to social isolation, deprivation, loss of dignity, increased morbidity, and early mortality rates.
Leaders should be prepared to view wicked problems as a systems approach rather than attempting to focus on processes, outcomes, or economic evaluations separately (Martin, Nelson, Lloyd, & Nolan, 2007). Planned improvements should systematically integrate and align administrative, managerial, clinical, and operational personnel with a goal of understanding the developing values and cultural changes taking place across the system. Although access to care or fragmentation of services may be the focal point being studied, it is important for the team to understand the “wicked problem,” identify root causes, and include all departments and personnel involved to find the best solution for that system (Shaw & Rosen, 2013).
Some hospitals have entered the housing market to house the homeless. Although this does help some nonprofit health care organizations to meet their community service obligations while receiving tax breaks in exchange, the primary motivation is to reduce unnecessary ED visits by the homeless and the health care spending associated with these “frequent flyers” (Bartalone, 2017). Other hospitals may not be getting into the business of housing themselves, instead electing to pay the rent for homeless “super-user” patients, ultimately saving the hospital money (Bryan, 2018). Some public libraries, which are often used by the homeless as functional day shelters, have begun addressing the myriad of social issues they encounter by employing social workers and public health nurses (Blank, 2015). The goals of these library-based programs are to connect their homeless and indigent patrons with available community services to meet basic needs, including medical care. These hospitals and public libraries are examples of positive deviance, where “certain individuals or groups whose uncommon behaviors and strategies enable them to find better solutions to problems than their peers, while having access to the same resources and facing similar or worse challenges” (“Positive Deviance,” n.d.).
Because longer term solutions for wicked problems can be elusive, some suggest that focusing on short-term wins helps key stakeholder groups maintain their drive while working toward those longer range strategies to potentially solve complex problems (Manville, 2016). One short-term win would be more robust cultural competency pre- and postprofessional training for health care students and workers. Exposing health profession students to vulnerable populations while highlighting the community resources (or lack thereof) available to address basic health needs can help to build perspective, deepen community ties, explore health disparity topics, and potentially mitigate the hardening of attitudes that can develop during professional practice.
Other short-term wins include community collaborative projects that connect homeless people with much-needed resources. The sixth annual Mobile Project Homeless Connect was held on January 25, 2019, and coincided with the annual HUD-mandated point-in-time count of the homeless. Organized by Housing First, Inc., this 1-day service fair brings together a variety of community agencies, including the USA Health and Wellness Services, which provided health assessments for the homeless utilizing interprofessional teams of health science students. After assessment by the student health teams, patients were referred to community agencies on site to provide follow-up care for medical, mental health, vision, and dental concerns, including referral to a community pharmacy that provides free medications to the homeless. The coordination of events such as these fosters stronger relationships between agencies while helping to identify gaps and redundancies in services for the homeless. It also provides rewarding educational and service experiences for students and faculty, while providing greater insight into the complexity of issues that vulnerable populations such as the homeless face in accessing basic human services (“Project Homeless Connect—Housing First, Inc.,” n.d.).
Limitations and Areas for Future Research
This study investigated a small group of homeless peoples’ experiences receiving health care and their perceptions of their interactions with providers in a midsized urban city on the Gulf Coast. Although the small study size and the setting reflect conditions endemic to a certain geographical area, the experiences shared are not dissimilar to those of many other homeless people in countless locations across the United States.
An important area that deserves further investigation is the perspective of health care workers who, despite their professional code of ethics to “do no harm” and provide patient-centered care, develop potentially negative or antagonistic relationships and attitudes toward marginalized populations (Jacobson, 2009). An unpublished study conducted by one of the current authors investigated the perceptions of ED providers toward people who are homeless and was met with resistance and ambivalence. The ED staff interviewed generally were reluctant to discuss their experiences with the homeless, and one facility escorted the research team off the premises, even though the researchers had gotten permission to conduct the study on site. The questions regarding their attitudes toward homeless people generated such an extreme level of distress that the clinicians refused to participate. This is in stark contrast to the homeless participants in the current study who were eager to tell their stories of health care experiences and interactions.
In the same unpublished study but in a different ED, a former student who earlier in her preprofessional studies had expressed an interest in psychiatric nursing now spoke disparagingly of the homeless she encountered in her current professional setting post 4 years of graduating. What professional experiences are influencing these attitudes and beliefs toward the homeless? How do professionals reconcile these types of belief systems with their professional codes of conduct? Are organizational cultures contributing to the development of negative belief systems or are key individuals influencing entire units to develop group think? More research that provides insight into provider/homeless patient perceptions and interactions in health care is needed to inform and inspire innovations to help improve outcomes and experiences for both groups.
Footnotes
Authors’ Note
One author was a member of the Homeless Coalition of the Alabama Gulf Coast Continuum of Care Board during the study period.
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 study was funded by a University of South Alabama Nursing Dean’s Grant.
