Keywords

Public Health Ethics Issue

To engage people who have been marginalized, public health practitioners are increasingly turning to authentic and truthful narratives. As a tool of both discovery and communication, narratives help public health professionals understand health issues from the perspective of the individual. Just as importantly, they promote a process that forces health professionals to identify and question the presuppositions and biases inherent in their own public health narrative. Understanding how their own narrative can drown out their capacity to listen and learn from community members can play a crucial role in the success of public health interventions.

Despite potential benefits, the use of narrative requires caution. Narratives that lack proper consent from their authors, contain inadequate framing or misleading information, or reinforce stereotypes can cancel their potential to effect social change. Employing narrative as a tool must begin with a respect for the autonomy of the narrator and an appreciation of the risk that recounting sensitive personal experiences poses. These demand the use of informed consent, privacy protections, and special protections for those who are vulnerable or have diminished autonomy. Thus, a personal narrative should never result from an intrusion upon privacy or a violation of autonomy that appropriates information from the person. Rather, consenting to share a personal narrative for the benefit of others should, we suggest, signify the narrator’s active demonstration of empowerment. We cannot empower people who are marginalized without first respecting and protecting them.

Resolving to share one’s narrative may empower a person to own and appreciate his or her personal experiences. That resolve to take ownership of one’s life story can also empower the decision making of others. The deliberate sharing of a personal story can encourage fellow marginalized community members to become empowered by owning their own narratives. When they in turn share their stories, sharing can become a chain reaction of both individual empowerment and social solidarity. Thus, respecting people, hearing their stories, and inviting them to share their stories with people with similar lived experiences can become both a reflector of, and contributor to, community empowerment.

The World Health Organization (WHO) defines social determinants of health as the conditions in which people live that impact health (WHO2020). Inequities in the social determinants of health have put some groups that have historically been economically or socially marginalized at increased risk of adverse health outcomes. Addressing these social determinants of health has become a recognized ethical obligation of public health professionals who work with communities. The Public Health Leadership Society lists as a guiding principle for the ethical practice of public health: “Public health should advocate and work for the empowerment of disenfranchised community members, aiming to ensure that the basic resources and conditions necessary for health are accessible to all” (Public Health Leadership Society 2002). Similarly, the American Public Health AssociationPublic Health Code of Ethics states that ethical policies and practices used to conduct and disseminate assessments of public health status and public health issues facing communities should, “Promote cross-disciplinary collaboration to define community problems and identify causal factors or social determinants of health” (American Public Health Association2019).

In this paper, we present a narrative from a woman experiencing major depressive disorder and Type 2 Diabetes. Her personal reflection describes how she came to understand her lived experience and the ways in which social factors impacted her health, and how this understanding contributed to her ongoing healing process. Her experience also illustrates the ability of her narrative to empower other marginalized community members and inform health interventions.

Background Information

Mental health, including social, emotional, and psychological well-being, affects how people interact with others, cope with stress, and make health choices. Depression can increase the risk of physical health problems in type 2 diabetes (Egede et al. 2009). Conversely, chronic health conditions may increase the likelihood of mental illness (National Institutes of Health 2015). Out of fear of being stigmatized, people may conceal that they have a chronic disease or a mental health disorder. Such fear can add to stress and worsen their health condition (Centers for Disease Control and Prevention2012). Childhood and adult financial hardship are independently important predictors of common mental health disorders such as depression and anxiety in adulthood (Morrissey and Kinderman 2020). Almost all types of mental health disorders are associated with higher rates of substance abuse disorders (Ross and Peselow 2012).

Social conditions such as poverty, housing instability, unemployment, and racism, are consistently related to poorer mental and physical health and lowered life expectancy (Braveman and Gottlieb 2014). Closing life expectancy gaps requires strategies which address social determinants of health (WHO2020). Public health interventions that ignore the impact of social determinants of health on their population of focus will likely fall short not only of closing life expectancy gaps but also of addressing health disparities and fostering health equity.

Approach to the Narrative

As public health professionals work to promote health equity, it is important that they understand the lived experience of individuals experiencing health disparities. Narratives can include both personal stories and broader collective perspectives of how communities have experienced marginalization, bias, and adverse health outcomes. Individual and collective narratives can illuminate the impact of social determinants on health, inform public health interventions, and form an act of empowerment by the storyteller.

The narrative that follows centers around Marcia Mercy Rumutsiro Kasambira, who experiences major depressive disorder and Type 2 diabetes. Everywhere she goes, she makes a point about two things. “Firstly, I acknowledge and give all credit to my faith in the God of Abraham, Isaac, and Jacob for my life. Also, I’d like to use my full name.” To Marcia, these two epitomize her heritage and story of pain, survival and now, flourishing. The eldest of four children, she was born at the Mutambara Mission Hospital in Zimbabwe and named for Rev. Marcia Ball, a white missionary who served her people for over 60 years and whom Marcia’s family affectionately called “Auntie Marcia.”

Marcia is a Certified Peer Specialist, a health professional with lived experience of mental health illness and/or substance abuse who uses her story to assist people experiencing similar circumstances. Marcia sees owning her story as empowering. She works alongside the other authors at the Good Samaritan Health Center, a non-profit clinic founded in 1998 in metro Atlanta. The clinic offers quality medical, dental, health education, mental health, and social services in an atmosphere of dignity and respect, regardless of race, ethnicity, or religion. In addition to clinical care, Good Samaritan provides a range of public health prevention services such as health screenings and vaccinations. Good Samaritan’s mission is “Spreading Christ’s love through quality care to those in need.”

Marcia was asked to share her experience for this article based on her use of narrative in her work and desire to further impact others through her story. Prior to hearing her story, the co-authors informed Marcia that her story would be used in its entirety, not combined to form a composite narrative. Marcia joined us as an author, providing feedback with each draft. We also promised to provide Marcia with a copy of the book in which her story would appear. Giving verbal and written permission sealed what was an act of empowerment on her part to share her narrative for the benefit of others. She does not view the sharing of her narrative as an intrusion in which her personal health information was taken from her or used for purposes without her consent. Sharing Marcia’s story serves three purposes: (1) the sharing empowers and heals the teller (2) the story resonates with others and can embolden them to pursue change and (3) her lived experience informs specific and general healthcare practice decisions.

Narrative

Marcia first heard about Good Samaritan Health Center from the founder of a recovery group where she was a twelve-step program leader. As someone who had grown up in in the Republic of Zimbabwe (formerly White minority ruled Rhodesia), she was skeptical. True, it was a Christian Mission Hospital in Zimbabwe that had provided the only available health care. But getting to that hospital was difficult and, as a Black person living under apartheid, keeping a low profile was essential. As a result, trips to the Mission were reserved for truly devastating illnesses. Health care was not accessible and not a priority. Marcia recalls stepping on a stick in her backyard which punctured her skin and resulted in an infection. She was 13 at the time but did not mention the ailment to her parents, as this was not the type of illness that would warrant care in Zimbabwe. The pain and infection festered through the school year. She remembers suffering under the assumption that nothing could be done. “The experience started a narrative that I don’t matter,” she explains.

Early experiences of racism reinforced this narrative. She was among a small number of Black students accepted into a competitive school in Zimbabwe. Students socialized, sat, and studied in segregated groups, yet Marcia befriended several White girls. As a result, her peers ostracized her, which fueled the feeling that she did not belong. On one occasion, she signed up for a school trip to hear a performance by a popular South African singing group. The day of the performance, dressed in her best, she got in line to board the bus along with the other students who had registered for the event. All of the other students were White. The school nun took her out of the line, informing her that she could not attend. She could not ride the bus and attend a public event with the White students. “I cried for hours as the nun rocked me in her arms,” Marcia remembers.

Although undiagnosed until the age of 47, Marcia had been experiencing depression for as long as she can remember. When her family moved to the United States, her attitudes and beliefs about health and illness, as well as her struggle with self-worth, traveled with her. Drinking became her way of dealing with life. “Alcohol was my best friend,” Marcia describes. Her experience of racism continued in the United States as well. She married a White man and they faced opposition as a mixed-race couple raising three children. By her account, he was abusive, emotionally, verbally, financially, and physically. She continued drinking to cope. One day, he came home and started hitting her. As she turned from him, she saw her daughters were standing in the doorway watching. The thought of her girls growing up believing this is how women are to be treated finally gave her courage. The next day, after a traumatizing 16-year marriage, she left with her children to seek emergency protection at a women’s shelter.

Though crippling, her depression remained undiagnosed and untreated. Her fleeting experiences with the U.S. health care system did nothing to dissuade her belief that health care was useless to her. Front desk workers talked down to her, and providers rushed by her ignoring her concerns and shaming her for her substance abuse. She was turned away when she couldn’t pay. “When people come in broken, all they have left is their dignity. So never take away a person’s dignity.” Marcia explains, quoting her mother’s words. When social and health care service providers threatened her dignity, she gave up. “You don’t want to come back, so you continue being sick.”

A twelve-step program, with the guidance of her Sponsor, opened a path to sobriety. After Marcia’s grown children had established lives of their own, she reconciled with her ex-husband who suffered from a terminal illness. He had found God and asked for her forgiveness. She cared for him during the last 6 months of his life, eventually quitting her job for the final month while his life ended in hospice. After his death, she lived with her younger sister’s family, who graciously opened their home for 2 years. During this time, Marcia’s brother offered spiritual support, which proved instrumental to her recovery. Through a partnership with Odyssey III, a program with a holisticapproach to addressing homelessness, she entered a housing program at Zion Hill Community Development Corporation. There she began to grow out of her life-long survival mode belief system. She found community in the twelve-step recovery program noted above which was made up almost exclusively of people experiencing homelessness. The founder encouraged her to go to the local clinic that she had heard about, Good Samaritan Health Center. After watching friends jump on the van to the clinic each week, she decided to give it a try. “My initial thought was to just keep going as I had always done, but I knew I was sick,” recalls Marcia. Her depression was worsening, and she was regularly experiencing suicidal thoughts. She knew she had diabetes but using insulin consistently seemed overwhelming.

Marcia’s personal and cultural beliefs and traditions allowed her to connect with the health center’s name, The Good Samaritan Health Center. Her mother, whose life had been taken in an accident, was a pastor and community healer who had taught Marcia the biblical story of the Good Samaritan and embodied love for neighbor in her ministry. Marcia remembers she was treated with respect and value at Good Samaritan. From the van ride to the clinic to her visit with a provider, she felt as though she was being told, “you are worth something.”

The clinic supplied medication for high blood pressure, anti-depressants to address major depressive disorder, and insulin to control her blood sugar. The presence of consistent access to care and medication provided hope that maybe she could get well. The medication and mental health consults improved her health, but the space the clinic provided for her to share and reflect on her story proved equally important. Her providers spent time listening to her story and spoke about life trauma, poverty, homelessness, and the impact these factors had on her health. “I couldn’t address diabetes until I got my mental stuff taken care of,” she insists. For Marcia, this included counseling and medication. As she started to partner with her provider to address her diabetes, she began taking ownership of her health. She took advantage of nutrition, health education, and cooking classes. Marcia still suffers from depression but has found a new approach to life with the help of treatment. She uses insulin daily and her blood sugar has been at her goal level for almost a year now. “I’m no longer coming from a place of destitution,” she says, “but walking into the promised land.”

Marcia presented at Good Samaritan appearing uninterested in managing her diabetes and non-compliant with her treatment, although she was open to behavioral health services. Her ability to share her story and understand the way in which her life experiences impacted her health were the start of her path to managing mental illness and controlling her diabetes. When her providers took time to hear her story and reflect upon their own beliefs and practices, the providers’ narratives were also challenged and changed. Her care plan focused increasingly on addressing her mental health in addition to her diabetes. The roots of her challenges in managing depression and diabetes became clearer in the context of the trauma she had experienced and the conceptions she held about health care.

“One of the most powerful pieces of information for me has been learning about these social determinants of health,” Marcia explained. “It made my life up to now finally make sense. My poverty mentality had caused me to not see that there was any hope for me.” She recalls feeling enslaved to life factors outside of her control. She describes it as, “the dark cloud that didn’t allow me to take a step beyond addressing the immediate.” She was stuck in a survival mindset. Her experiences of racism fueled her sense that “I don’t matter” and stopped her from seeking help. Having experienced racial discrimination within the health care system, she feared rejection and mistreatment if she sought care. “Understanding this,” Marcia describes, “was the starting place of healing.” For Marcia, understanding the relationship between her upbringing, traumatic life experiences, and current health, allowed her to relinquish self-blame and become an active participant in her health care.

Marcia has since become a Certified Peer Specialist and now works at Good Samaritan, using her lived experience to open doors for others to tell their story. Her work as a Certified Peer Specialist centers on being empowered to use her personal story of recovery to encourage others in their own recovery journeys. “You know, I have to take medication too,” Marcia says in her interactions with patients. By sharing her story, Marcia de-stigmatizes mental illness, addiction, abuse, and homelessness. Her story thus encourages health-promoting behaviors and public health prevention measures, such as screening and routine vaccinations (Fischer et al. 2019, 990). Marcia engages in empathetic listening with her peers, using storytelling as a tool for making sense out of illness and suffering (Stanley and Hurst 2011, 39). “I see it over and over again with my peers,” explains Marcia. “When a person is given the opportunity to talk and know that someone is actually listening, they break down in relief.” She provides a space in which they can share their own narratives and receive validation that their experiences are significant and understood. Validating their lived experience builds trust and creates opportunities to make change. “When the walls come down, I can ask them, ‘Have you thought about counseling?’” She also focuses on removing shame, changing the question from, “what is wrong with you?” to “what happened to you?”

Guided by the principle of self-determination, Marcia empowers individuals to make their own decisions and achieve their goals. Most recently, this has led to a project in which Marcia is helping peers to share their stories within their communities. “This is transformational,” she explains. “As they share their narratives, they are encouraging other peers that they can accomplish their goals.” One patient, who has been receiving care at the clinic for several years, just moved into permanent supportive housing. Marcia helped her create a video in which she shares her experience of recovery and fulfilling her goal of moving inside after 15 years on the street. She is now sharing this video with her community. Her audience includes people currently experiencing homelessness as well as people who have supported her in her recovery. Marcia emphasizes that for peers who have chosen to share their story in this way, this experience has given them a purpose. “This is the most important thing,” she exclaims. “This is life-changing.”

The narratives of Marcia and peers who have chosen to share their stories have also shaped the approach taken by the health care team at Good Samaritan. Identifying themes in the narratives of patients allows the team to restructure programs in a way that addresses social needs. These needs include actions like providing breakfast in the morning, setting up an art table to decrease stress while waiting, and building partnerships with housing providers. Marcia has shared her story with the staff, helping the health care team understand social determinants, such as poverty, as traumatic experiences with health implications (Sapolsky 2005, 96–99; Squires and Lathrop 2019, 30–39). Through her narrative, Marcia is empowering her peers and equipping the health care team to better meet the needs of community members who have been marginalized.

By responding to the needs of patients and creating an atmosphere of respect and caring, the staff at Good Samaritan has maximized opportunities for public health interventions. All patients have access to mammography, Pap tests, sexually transmitted disease screening, tuberculosis (TB) screening, colon cancer screening, and smoking cessation support. Women commonly complete breast cancer screening on a mobile mammography unit that comes to Good Samaritan. This option allows them to complete screening in a trusted environment without additional travel. Based on expressed difficulties with transportation, TB screening is done though a blood test so that patients do not have to return to have a purified protein derivative (PPD) read. Routine adult vaccinations and annual flu shots are also available. There are many patients like Marcia, who are experiencing homelessness and facing barriers to treatment. However, they will consistently take advantage of public health interventions that take place in a trusted environment that gives them control over the services they receive.

Discussion

As public health strives toward health equity, it can learn from the sharing of personal and community narratives like Marcia’s. Such narratives can serve as engagement tools that promote individual healing, empower community members to promote positive change, and inform public health interventions.

Narratives can only accomplish these goals when they are used in an ethical manner which respects people’s autonomy and promotes the dignity, safety, and well-being of the storyteller. We suggest that informed consent can provide an opportunity to reflect, and contribute to, community empowerment rather than just become an added burden. Used appropriately, informed consent empowers people to deliberately choose to share their narrative for the good of others. This aligns with The Belmont Report’s ethical considerations of respect for persons, beneficence, and fairness (Department of Health, Education, and Welfare 1979). Such use contrasts with taking information from people without their knowledge or consent and using it in ways that do not benefit them. Involving narrators as authors is one of the distinct strengths of this narrative.

In crafting communication strategies, public health professionals need to listen to and understand the community’s cultural and social values and health beliefs (Santibanez et al. 2017, 3). The activist slogan, “nothing about us without us,” holds true in all health programs and practices (Squires and Lathrop 2019, 182). Our narrative used third-person voice, direct quotes from transcription, and multiple opportunities for all authors to review and critique the reconstructed account. This approach allowed us to demonstrate respect for a co-author’s values and beliefs (e.g., “Firstly, I acknowledge and give all credit to my faith in the God of Abraham, Isaac, and Jacob for my life”) while also permitting the overall narrative to remain objective. Previous authors have suggested that writing in the third-person may foster trust in a narrator who is by convention an authoritative figure and allow readers to see the protagonist from an observer position resulting in feelings of sympathy (van Lissa et al. 2016, 59).

Collecting and listening to narratives engages the affected population and informs decisions about how to best work with the community. Rather than imposing solutions without community engagement, public health interventions should resonate with the values and voices of community members and stakeholders. When both speaker empowerment and listening are taken into account, public health can avoid harm, maximize positive outcomes, and treat storytellers fairly, as autonomous partners in their own health and the health of their community.

Questions for Discussion

  1. 1.

    Considering examples from your reading and personal experience, how could public health practitioners have used narrative approaches to better understand the health concerns of underserved and vulnerable populations while also guarding against inadvertently perpetuating stereotypes that may undermine health goals?

  2. 2.

    When someone makes a conscious choice to share his or her narrative to benefit others, it can be an active demonstration of empowerment, rather than an intrusion or violation in which information is taken from the person. How might informed consent be framed in a way that is empowering?

  3. 3.

    Marcia owns her experience. Understanding the ways in which social factors have impacted her health formed the starting place for her personal healing as well as that of her peers. How might other clinics and public health programs work with Certified Peer Specialists like Marcia to use trust, acceptance, and validation to empower individuals to make decisions, achieve goals, change behaviors and improve health?

  4. 4.

    In what ways can consideration of the social determinants of health and conditions in which people are born, grow, learn, work and live influence care plans and complement evidence-based clinical care?

  5. 5.

    Narrative can help to challenge providers’ underlying assumptions that promote persistent inequities. As providers listen to clients’ experiences of poverty, homelessness, illness, and addiction, how might their perspectives on these issues expand beyond their personal experiences? For example, how might a provider respond when clients experiencing homelessness frequently express the need for permanent housing as opposed to moving between shelters and temporary programs?