A Heart for the Care: Affect, Kin, and Care Work in a Zambian Hospital

Abstract

At the only standalone pediatric hospital in Zambia, patient wellbeing often rests in the hands of bedsiders. Bedsiders are caregivers, often family, who sit at the patient’s bedside, feeding, cleaning them, and running medical errands. Bedsiders are critical human infrastructure for the hospital and its staff. In our research, we heard repeatedly that bedsiders must have a “heart” for caregiving, taking on unremunerated and exhausting informal labor. We draw on Wendland’s “heart for the work,” a phrase commonly used among healthcare workers in Malawi and Zambia describing the medical profession, to explore what this metaphor reveals about care.

Introduction

At Arthur Davison Children’s Hospital (ADCH), on the Zambian Copperbelt, patient wellbeing often rests in the hands of bedsiders. Bedsiders are caregivers, often family, who stay by the patient’s bedside all night and day every day, feeding and cleaning patients, communicating with healthcare staff, and encouraging the patient. They also go outside the hospital to procure medication and special foods or to donate their own blood if needed by the patient. Bedsiders are important human infrastructure for the hospital and its staff. In many ways, they alleviate the pressures in understaffed and under-resourced hospitals, where nurses and doctors are pulled away from the bedside and where a range of outside resources are needed to accomplish clinical care. While bedsiders may provide critical infrastructure, hospitals are not structured to accommodate bedsiders, making bedsiders’ presence both necessary and problematic. The history of bedsiding in Zambia as researched by Lindsey Kaufman (forthcoming) reveals that immediately following 1964 independence, the Zambian government rapidly invested in the public healthcare sector, which the colonial Northern Rhodesian government had starved of resources. However, the fall of copper prices in the early 1970s resulted in the country’s severe economic downturn, and the International Monetary Fund and World Bank required strict structural adjustment programs that resulted in underfunded public hospitals and clinics. Many nurses and doctors were incentivized to leave the public sector through voluntary separation programs. Others left for better job opportunities in neighboring countries or Europe. As a result, hospitals have relied on bedsiders to supplement the insufficient numbers of nursing staff for decades.

During our research on bedsiding at ADCH, we heard repeatedly that bedsiders must have a “heart” for caregiving: to take on unremunerated and exhausting labor for family, away from family, and in a way that heals the patient, without disrupting the medical system. To have a heart for caregiving was to provide the best care possible in the face of systemic lack; providing care to a patient even when there were long wait times for medical technologies, even when the right medication wasn’t available. Bedsiders had to do all this without their own bed or access to adequate food. In this respect, these invocations of heart reminded us of how healthcare professionals in the region describe their approach to their medical work, as Claire Wendland (2010) has shown in neighboring Malawi in her book, A Heart for the Work. Wendland’s research with Malawian medical students led her to identify how having a heart for the work became centered during medical training and practice, something she compares to the more cynical socialization that occurs amongst medical students in the United States. She writes, “Heart, as these young doctors used it, translated best as a sort of responsible empathy, or empathetic responsibility, and medical trainees saw it as the sine qua non of a good doctor” (177, emphasis original). Similar to Wendland’s research in Malawi, hospital staff in ADCH talked about having a heart for the work of caring for their child patients, something that kept them going during fluctuations in resources and staffing, and through pandemics and other crises.

Following Wendland, then, a bedsider’s “heart for the care” like clinical workers’ “heart for the work” might be described as a call to continue the labor of caregiving, with empathy, in the face of the difficult task of caring for a patient in an underfunded and under-resourced hospital. However, bedsiders are not healthcare workers, and having a heart for caregiving (rather than work) may appear redundant without grounding in the anthropology of care in the region. Anthropologists working in southern Africa have demonstrated how the feelings and doings of care can become entangled and need to be both inwardly and outwardly managed. The stakes of such management are high, for women especially, when caring in settings where resources are not assured and where they rely on others for their own care (Klaits 2010, Hunleth 2017). In terms of bedsiding, managing care with a heart—and showing this to others—might ward against poor outcomes for the patient and for bedsiders themselves, who could face social, financial, and health implications while caring during a child’s hospitalization.

When successful, such management could come across as a strength, something positive that kept bedsiders going and that moved between bedsider and child in healing ways. In Byron Good’s (1977) writing on “heart distress” in northwest Iran, he urged anthropologists to examine the experiences that symbols—like heart—condense. Our interviews with bedsiders in ADCH suggest another dimension to heart, something that is differently inflected by bedsiders, but nonetheless operates within the difficult environment where having a heart is both valorized and necessary to accomplish care. Bedsiding is challenging care work provided against the backdrop of hospital shortages, and in ways that could deepen shortages in the households bedsiders leave behind (Chileshe, Bunkley, Hunleth 2021). The hardships of moving to the hospital are known to contribute to what medical professionals call “treatment abandonment,” when bedsiders cannot stay in the hospital for social and economic reasons and leave the patient against medical advice (see Slone et al., 2014 on pediatric cancer in Zambia). In their interviews with us, bedsiders spoke of their hearts as unsettled, hurting, and heavy, invoking heart not only to share what kept them going and their imperative to care but also to express their grief, loss, and abandonment. That is, invoking heart in the context of bedsiding served as an idiom of distress – a dynamic, culturally mediated expression of distress that also includes the reactions (or non-reactions) to that distress by household and kin (Nichter 1981, 2010). In effect, the same structural factors that necessitate the heart to keep going could leave bedsiders exhausted, distressed, and socially isolated. In what follows, we build on these previous studies by taking heart— both “for giving care” and expressing distress—as a lens for thinking through hospital bedside care as many things at once: underappreciated, gendered, embodied, experiential, affective and performative.

From a Heart for the Work to a Heart for the Care

Bedsiders often invoked “heart” when talking about their experiences of providing care – having an eager heart, a good heart, a caring heart, and also a hurting heart, an unsettled heart, and an abandoned heart. The phrase stood out to us both for its poetic nature and for the multivalent ways in which it was used by bedsiders and clinical staff. It also stood out because heart has been invoked so often in the literature on formal labor, especially care work.

Researchers have attended to heart when talking about formal labor. For Wendland (2010), heart was used by Malawian doctors as a way of describing a commitment to care for the patient and emotional attachment to providing care. It was a driver for Malawian clinical staff to continue working under challenging conditions such as low pay, lack of medical equipment, and uncertain access to medications. Elana Buch (2015) has shown another aspect of heart when applied to formal labor in her work with home caregivers in Chicago. Though Buch does not use the term heart, her work explains how home caregivers—often women who come into aging Americans’ homes to provide daily care and companionship—make sense of the low pay by pointing to something within them that drives them to care. Having a heart, as researchers studying formal labor have shown, extends beyond the internal. It is also often performative, especially in service positions. Arlie Hochschild (2012), for example, wrote about the managed heart to discuss the highly gendered nature of “emotional labor” in service positions. We connect these insights about care workers to the stories of Zambian bedsiders, who negotiate their distress in order to present a caring and calm exterior. In both instances, social and financial precarity raise the stakes for managing one’s public heart. Put together, these various researchers have shown heart related to formal labor as something that keeps one going, as a performance, as a metaphor and as gendered labor. It is also deeply taxing.

In moving from heart for the work (Wendland 2010) to our observations of heart for the care, we move from the formal to the informal economy of caregiving, from paid to unpaid labor. Where Wendland was thinking and writing in terms of clinical staff and clinical work, we began considering heart in terms of care and the bedside caregivers in a hospital setting. For the clinical providers we interviewed, as for the medical students Wendland interviewed, care performed in the hospital was formal labor. But for the bedsiders, this care was unpaid labor, largely carried out by women and for their kin (di Leonardo 1987).

As a form of care, bedsiding is work, and it is also simultaneously many other things. As scholars have shown, care can also be understood as a practice (Mol 2008, Mol et al., 2010), an affective state (Black 2018), a biomedical engagement (Spray et al. 2021, Hunleth 2013), a relational and interembodied experience (Bunkley 2022, Kleinman 2013, 2015, 2020; Kleinman & Van Der Geest, 2009), as well as a process defined by social and economic inequality (Buch 2015, Robertson 2021). Fiscal policies and epidemiological crises have considerably shaped the landscape of care in Zambia specifically and southern Africa more broadly. Zambia has felt the pains of the International Monetary Fund and World Bank’s structural adjustment programs. Epidemics, such as HIV and TB, were exacerbated by these programs and overwhelmed families and social structures across southern Africa (Hunleth 2017, Klaits 2010). Caregiving for the sick has taken on a particular texture within these larger political and economic shifts. Part of this texture relates to “heart”—the subject of our paper— and how caring sentiments and actions influence each other. One example of this is how care, as an action, takes on a different meaning for all actors involved (clinical staff, patients, bedsider, other family) when taken with different feelings like affection or resentment, love or hatred. These meanings have real-life consequences for those giving care, whose social position and support may rely on how the quality of their care is perceived by others (Hunleth 2017, Livingston 2005, Klaits 2010). That is, the “intersubjective, interdependent doings and feelings of care affirmed relationships and worked to preserve social and biological life,” particularly for people most marginalized in societies due to gender, social status, economic insecurity, and a range of other factors (Hunleth 2019: 159; see also Livingston 2005, Klaits 2010, Ross 2010, Whyte 2014).

There can be violence in care, as Sameena Mulla has shown (2014) in her study of sexual assault survivors in the city of Baltimore. Mulla explores the ways that institutions and processes established with the specific purpose of providing care, such as forensic nurses collecting and documenting evidence from victims of rape, can actually be inflicting more harm on individuals in the service of this supposed care. At ADCH, bedsiding was about “staying close” in an attempt to ward off the potential violence of care by providing what patients needed when hospitals and hospital staff could not. But such institutional violence could also affect caregivers. Due to hospital resource constraints, bedsiders had no place to sleep and struggled to cook food for themselves or access food from the hospital. There was a mother’s shelter for bedsiders to sleep in on the grounds of ADCH; however, bedsiders expect and are expected to always be by the side of the patient, making it difficult to leave to sleep in another area of the hospital. The mother’s shelter is also primarily for postpartum mothers whose babies are in the hospital. There is also an area of the hospital where people can cook, but they have to bring their own pots and pans, something many people do not or cannot travel with. Many bedsiders have to sleep in a chair next to the bedside, or sometimes try and sleep under the bed until roused by nurses or security guards. Providing care often leads to the deterioration of bedsiders’ bodies. Being in the hospital to provide full time care to a patient meant that a bedsider had to step out of their everyday life, leaving other work and social obligations, to be fully present at the side of their child patient (Chileshe et al. 2021, Agbo et al. 2019, Brown 2012, Goudge et al. 2007, McIntyre 2006). Because most unpaid caregiving carried out by women (Hochschild 2012, Berg and Woods 2009, Livingston 2005), the act of bedsiding is often devalued.¹

Caregivers expected and were expected to have a “heart for the care” all while navigating care for their sick children within a challenging hospital environment. In this article, we will show that having a heart was not just about shaping the well-being of the child as patient, it was also about maintaining social relations and upholding the socially expected role of caregiver. The bedsider’s heart was subject to judgement by hospital staff, other bedsiders, family, and friends. If their heart was good enough, then the bedsider was deemed able to provide the best care possible. This care was enacted through everyday tasks – bathing, feeding, getting medicine, talking with hospital staff, and present. While bedsiders and hospital staff discussed how a good heart could be healing and was an essential quality in caring for patients, we heard from many bedsiders that their hearts were also heavy, broken, fearful and unsettled, requiring bedsiders to manage their emotions and hearts. We will show that having a heart for the care is more than just caregiving for the patient. It is also the often-hidden management of broken, unsettled, and heavy hearts and the negotiation of household health, economies, and social relations – often at a distance. This article aims to contribute the importance of understanding these largely gendered norms and expectations of caring, the complicated ways kin relationships are involved or not involved in caring, and bedsider access to social and financial support. Thinking through the struggling side of heart we acknowledge the challenges Zambian bedsiders face while providing care within the clinical setting and the ways these challenges can often lead to social isolation and abandonment.

A Hospital that Cares

ADCH is a public hospital and, at the time of this writing, the only standalone pediatric hospital in Zambia. People traveled from very far away to be able to access services at ADCH. The need for most people to travel to ADCH and the webs of care that supported their stays at the hospital are important parts of our research if not necessarily included in the physical research site of ADCH. During our research at ADCH, clinical workers told us about the importance of bedsiders to hospital functioning. For example, Dr. Siwa shared, “That’s the beauty of having a bedsider. Because we don’t have the capacity to deal with the patients the whole time as health workers.” While bedsiders labor for healthcare, they are not formally paid or trained healthcare workers in the hospital. The stories in this article highlight bedside labor and the ways bedsider experiences extend beyond the hospital walls. We utilize the lens of hospital ethnography (Olsen and Sargent 2022, Van der Geest and Finkler 2004) as a way of understanding what we observed at ADCH while situating this lens within the broader context of household and community care (Chileshe et al. 2022, Mutanekelwa and Chileshe 2020, Agbo 2019, Brown 2012), and specifically care that was provided against the backdrop of the COVID-19 pandemic (Hunleth et al. 2021, Asante et al. 2021).

The pandemic not only changed our team’s ability to be present in Zambia; it also radically altered the hospital as a setting for data collection and upended bedsider and patient lives and livelihoods. COVID-19² surfaced many realities already present but perhaps not as obvious before the pandemic, such as the depth of bedsider reliance on social networks as well as bedsider exhaustion and a new inability to be able to “swap” places with someone in order to find respite from caring (Asante et al., 2021).

Data collection for this project was carried out from August to December 2020 at ADCH and entailed two overlapping components. First, narrative interviews based on a modified version of the McGill Illness Narrative Interview were conducted in-person with 30 bedside caregivers of children who had been hospitalized for at least five days. All these interviews, except for one, were carried out in the Bemba language by Dr. Comfort Asante, a medical doctor. Bedsider interviews were recorded and then translated and transcribed into English. Second, semi-structured interviews with 44 ADCH healthcare professionals were conducted via Zoom and WhatsApp by team members located in Ndola and Lusaka, Zambia and in St. Louis, MO, USA. Transcripts from both bedside caregivers and hospital staff were coded in NVivo20 by the authors using both deductive and inductive means. All names used in this article are pseudonyms to protect the identity of participants.

Of the 30 bedsiders, 21 were married and 9 were either single, widowed, or divorced. 27 bedsiders were women (17 mothers, 6 grandmothers, 1 aunt, and 3 stepmothers) and 3 were men (all fathers). Most bedsiders came to ADCH from around the Copperbelt Province (77%). The next most-represented province was Northwestern (13%). For the most part, all bedsiders had to travel significant distances to access services at ADCH; transportation, or lack thereof, was often a hindrance for accessing care or staying in touch with family. Fifty-three percent of bedsiders had spent one to two weeks in the hospital at the time of our interviews, with 23% having spent three to eight weeks. At the time of research, hospital gates were closed, and only hospital staff, patients, and one bedsider per patient could enter the hospital.

The Empathetic and Eager Heart

Heart, when used as a metaphor, often has positive connotations. In Zambia, heart is seen as a necessary, good quality to have in order to provide optimal patient care. As 60-year-old Towani, a grandmother and bedsider from Copperbelt Province, shared with us, “[F]or someone to be seen as a good bedsider, they must have a heart full of empathy, a heart full of sympathy, a heart eager to help, a heart able to check on my neighbor’s child to say how has s/he woken up today? And you help out if there is need.” These are ideal qualities for providing ongoing bedside care. We present this positive interpretation so that one might understand how caregiving is often talked and thought about in ADCH (and more broadly) and to provide a sense of the standard of caregiving to which bedsiders are held, even in the face of other negative experiences.

When Dr. Asante asked participants what characteristics a bedsider needed, Chola, a 30-year-old mother, responded, “You need to have a good, patient heart” and Purity, a 42-year-old stepmother, said, “You need to have a kind heart for the person you are nursing.” These themes of “good,” “patient,” and “kind” also extended to what kinds of hearts bedsiders expected clinical staff to possess. For example, Mwaba, another bedsider caring for her stepdaughter said, “the doctor that is working on my daughter has a very good heart. The doctor doesn’t treat her like a patient.”

Not only were women the primary bedsiders at ADCH, but they were also held to a higher standard than their male counterparts because of gendered views about who should be providing care. Sister Fridah, a hospital nurse, explained:

...for women to actually be the bedsider, it’s easier, and I think it’s better [be]cause, you know, a woman has a caring heart compared to males. So, where we have bedsiders that are actually males, fathers, uncles, grandfathers, usually, they have this habit of wearing out. They will maybe leave the child alone [for] maybe an hour or so, and they come back. Maybe they would give an excuse of went to do work to raise money, but with mothers, it’s rare that they would actually leave the patient alone. They’re usually there to see to it that they care for their children.

Hospital staff judged women that left the bedside more harshly than they judged men. Such women were thought to be bad caregivers, unfit mothers. If a patient’s condition did not improve or a patient became sicker, bedsiders were blamed for providing poor care, for not having a good heart. To be deemed to have a bad heart could result in social isolation at the hospital.

The Dark Side of Heart

The gendered nature of caregiving, the public perception that having a “caring heart” was necessary for providing quality care, and the scrutiny of caregivers in and out of the hospital reveals the darker side of heart. We saw this dark side to heart occurring in two overlapping ways. First, just as hearts could express positive emotions that were transferred to patients, hearts could also express negative emotions. (Hunleth 2017 and 2019). In this way, bedsiders had to be careful to shield the patient from “bad hearts,” even their own.

Second, since hearts were capable of being either good or bad bedsider hearts were the subject of rumor and gossip. Just as a person with a good heart could be discussed and upheld as a shining example of how to properly provide care, a person deemed to have a bad heart could become the subject for judgment, rumor, and social isolation, with material consequences. Our observations revealed that managing the heart and maintaining an outward appearance of calm and loving care was critical for a bedsider to provide care to a patient and to be received positively while navigating hospital spaces and social relationships. The capacity to present oneself as positive and hopeful, while privately managing fears, worries, and concerns, was essential to being able to continue accessing quality care for a patient and mobilizing social networks to help them financially.

The remaining space of this paper is dedicated to sharing bedsiders’ experiences with this fraught, dark side of heart. Through these stories, we illustrate the pressure of having to present a “heart full of empathy, a heart full of sympathy, a heart eager to help, a heart able to check on” while navigating complex clinical spaces, financial precarity, and uncertain futures. These stories show the toll taken on bedsiders’ hearts, minds, and bodies when medical structures are predicated on “heart for the work” or a “heart for the care” for providing medical care and supporting patient wellbeing.

The Hurting Heart – Tenuous Kinship Relations

Let us introduce you to a bedsider whom we call Natasha. Natasha was 22 years old when Dr. Comfort Asante interviewed her. Several months prior to meeting our team, Natasha had returned home from a funeral and found her 7-year-old son, Angel, crying and with swollen limbs. She asked what was wrong, and Angel told her that his stepfather had yelled at him, telling him to go outside. Natasha confronted her husband, and he told her “I don’t want this child, take him to your grandmother.” They disagreed on this, with Natasha saying she was his mother, and he should remain with her and in her care. Angel’s swollen limbs worsened, and two days later, Natasha took him to the local clinic. Angel’s blood pressure was rising, something Natasha believed to be a result of her husband yelling at him. Angel began to question if this man was his biological father, something he had not been told, but he surmised from how harshly he was treated. Natasha believed the tension in her household was manifesting as tension in Angel’s body.

When Dr. Asante met Natasha, she and Angel had been at ADCH for 2 months for what the doctors described as damage to Angel’s kidneys. Natasha and Angel had to wait several weeks at the hospital for a catheter to help with his kidneys and his swollen limbs. The catheter worked for a while, reducing the swelling in his legs, but after about a week, the swelling returned. The hospital didn’t have another catheter that might be used to help with the swelling, and hospital staff were trying to decide whether or not Natasha and her son would need to seek treatment elsewhere. Natasha began to feel despair; the other bedsiders’ children were all improving, while her own son’s condition was worsening. She told Dr. Asante that she just had to remain strong. She had to stay strong for her son. When Dr. Asante asked Natasha what challenges she was facing, Natasha replied, “even if it’s at home, the way we live isn’t good. This same stepfather that we live with uses harsh words over Angel. So, sometimes my heart really hurts.” (Emphasis added.)

The tension within her household weighed heavily on Natasha’s heart. Despite her heavy heart, Natasha’s commitment to remain strong for Angel was evident. She had travelled over 5 hours to Ndola, leaving her other children with her mother in the city. Not only could Natasha not count on her husband to help her with caring for Angel, but she also believed he was the cause of Angel’s condition. She was left in a precarious position, caught between her children’s wellbeing and a husband who rejected her child. This also left Natasha in a financially precarious position. If her husband was unwilling to pay for Angel’s medical bills, and she was in the hospital by his side and unable to work, what was she to do? Natasha was forced to manage her heavy and hurting heart to provide care for her son and uphold her socially expected role as mother and caregiver, but at a cost to her own wellbeing. Social support and kin relations were critical for providing care. When they were absent, both bedsider and patient suffered.

The Unsettled Heart – Uncertain Futures and Idioms of Distress

Thomas was one of the rare male bedsiders Dr. Asante met at ADCH. At the time of our interview, he was 35 years old and had brought his 10-year-old son, Kelvin, into the hospital because his entire body had swollen up. Initially, Thomas had taken Kelvin to a local clinic where he was given a variety of medications and injections. Nothing seemed to work. Kelvin began vomiting and having what Thomas described as “fits.” The clinic arranged for an ambulance to take Thomas and Kelvin directly to the emergency room at ADCH, about 9 hours away. Despite having been at ADCH for 2 weeks, Kelvin’s condition had not changed, and there was not a satisfactory diagnosis save for trouble with the kidneys and blood pressure. When asked about the biggest challenge of being a bedsider, Thomas responded:

It is very difficult, because at any given time, you have to lift him, do this and that, everything is on you, cleaning up urine is on you, everything he might need is on you, you have to go outside to buy, you go back inside, you’re just everywhere, there’s no sleep, you can’t eat proper food, no, because your heart isn’t fully settled. (Emphasis added.)

Thomas had taken up the role of primary bedsider in lieu of his wife, who had just given birth and was breastfeeding their newborn at home. Like Natasha, he was managing his heart to show strength for his family back home and provide support to his ailing son.

Thomas described the ways he was responsible for every single thing his son might need – lifting him, cleaning his urine, feeding him; and that in addition he had to go out to buy food or medicines, and provide financially for his family back home, a difficulty given his presence in the hospital with Kelvin. Thomas’s heart was unsettled both because of the challenges of caring for a sick child but also because of an uncertain future. Kelvin’s condition was not improving, and absent a diagnosis, Thomas and Kelvin did not know what to expect, how long they would be in the hospital, what treatments might look like or cost. They existed in an unsettling liminal state.

We identified another unsettled heart with Stella. Stella was 28 years old when Dr. Asante met her in October 2020. Her son, Samuel, was almost 5 years old when she brought him to the hospital for his sickle cell disease. Periodically, Samuel, would get a fever and a cough, and Stella would take him to the hospital for blood transfusions when blood was available. Stella was separated from her husband, living with her children, her mother and sister, and her brother’s children. Without much money, Stella was often unable to buy extra food or milk for her son while they were in the hospital. It was difficult for her to watch fellow bedsiders buy extra things like milk and oranges for their children knowing she was unable to do the same. Samuel’s father did not help with buying food or paying for his medical treatments. It was also very difficult for Stella’s family to bring her food. Living an hour away, they would have to cook two meals – one for the family at home and one for Stella and Samuel – and then walk over an hour to deliver it (delivery wasn’t easily done once the hospital gates closed due to COVID-19). Stella told us, “I’m really struggling, I cannot manage… I’m not managing.” Stella had no other family or friends that were able to help her. When asked how her life had changed, Stella responded:

I can say it has changed, because my heart was not settled when my child wasn’t alright, but now, I’m much better, I’m happy now because I have seen the situation is better, yes. The time he was put on oxygen, I was hopeless, even when I was asked to stay here, I got so drained. I got so drained and wondered why things turned out this way, why my son had to be put on oxygen. The nurse tried to encourage me and told me it was because he wasn’t breathing well and the oxygen was just to help him to breathe… when I felt drained, I just didn’t have strength, especially the idea of staying in hospital, I just had so many thoughts, it was something else. (Emphasis added.)

Stella developed her own illness while caring for her son in the hospital. Her head ached, her legs hurt, and her stomach was in pain. At one point she herself was seen by clinical staff and prescribed medications. She was afraid of formally admitting herself to the adult hospital out of fear of leaving Samuel alone.

With her family unable to support her and an absent husband, Stella’s heart was unsettled about the future of her son’s health and her ability to continue navigating clinical spaces. Sickle cell requires periodic blood transfusions, meaning Stella and Samuel would be chronically in and out of the hospital. Stella mentioned that she “had so many thoughts,” and also headaches. This theme of “thinking too much” or “having troubling thoughts” often came up in our interviews. Themes of thinking too much and social abandonment ran throughout the ways bedsiders talked about their own hearts. The idiom of distress ‘thinking too much’ has been well studied (Backe et al. 2021, Haroz et al. 2017, Kaiser et al. 2015, Nichter 1981 and 2010). The phrase is used to describe “feelings of emotional and cognitive disquiet with psychological, physical, and social consequences on people’s well-being and daily functioning” (Backe et al. 2021:655). Thinking too much or having troubling thoughts often arose among bedsiders who were experiencing social abandonment. This abandonment could come in the form of husbands abandoning wives or a larger biological family’s inability to be present due to distance or financial constraints, as well as abandonment from affinal family or from the biological family of stepchildren. As idioms of distress, thinking too much or having troubling thoughts, are a manifestation of inward psychological distress and suffering. The somatic and psychosomatic expression of leg pain, headaches, and stomach aches likely arose from sitting for long times and not having access to enough food, but also from the distress of uncertain futures – precarious financial situations, facing a chronic illness requiring chronic care, and the abandonment by a husband in a time of need.

Maintaining a heart for the care meant finding the strength to not only provide care for the child as patient, but to also manage one’s own emotions. A heart for the care was relational, arising between bedsider and patient and among also bedside, hospital staff, kin, and other bedsiders. Heart, like care, exists between people. In addition to providing care for a patient, it was also a way of judging someone’s ability to provide care and be a caregiver. It was a way to maintain social relations and uphold a person’s role within a family.

The Abandoned Heart – Experiences of Isolation

Chisala was 33 years old when Dr. Asante interviewed her in December 2020. She had initially taken her 7-year-old stepson, Francis, to their local clinic in July for what was diagnosed as tonsillitis. There, the clinic staff also diagnosed him with tuberculosis. After another visit to the clinic a week later, Chisala started giving Francis an increased amount of TB medication, in addition to antiretrovirals he was already taking for HIV. By October, Chisala had seen no improvement in Francis’s condition. In fact, his legs had started to swell, and he was experiencing weakness. He eventually became so weak that Chisala and her sister had to pick him up and carry him to the bathroom because he was unable to stand on his own. Francis’s complexion began to yellow. Chisala took him again to the clinic, where she was told that she had been overmedicating him for the tuberculosis. Due to this increase in medication, his liver was not functioning properly. Francis was referred out of the local clinic to ADCH. Chisala explained:

The man I’m married to has four children. Boys only. Their mother died in 2014. So, ever since I got married to this man, I started taking care of [his] children. The family from the woman’s side helped me in taking care of them for just four days and [then] switched off their phones. At times, you might find me just sitting alone, talking to myself in my heart because this is a huge burden that they’ve left for me to deal with alone. There isn’t anyone to bring me nshima and even money, my relatives would be the ones to send me money, they would maybe send K20, and yet this child is pooping in his pants, so I needed diapers as well, and the nurses would tell me to look for a diaper and dress him in it. The father just does piece work, so even if he decided to come here, he wouldn’t leave this child’s siblings alone because they would die. So, I just accepted it and told myself to just stay because there wasn’t anything I could do. (Emphasis added.)

Chisala was stepmother to four children while also sharing one biological child with her husband, Mapalo. Francis’s biological mother passed away in 2014 when Francis was about one year old. His biological maternal family lived in Ndola, where ADCH is located, but they did not help Chisala, who felt abandoned. There was enormous financial pressure on the family to maintain Chisala and Francis in the hospital.

Chisala had some support from both her husband and her church group, who helped her buy diapers from time to time. Her husband sent what money he could spare while still taking care of himself and their four other children back at home. Francis often asked for things like food or drinks that Chisala was unable to buy, needing to save the money for diapers, medication, and other necessities. She felt particularly aggrieved that Francis’s biological maternal family would not come support them, saying,

I would sit and talk to myself saying I once stayed in Central hospital in July, alone, without any family, without any support from the woman’s family. I’m now here [ADCH] and they are nearby [Ndola] but they are not even coming through to at least help me. They don’t support me. That’s what I’m really complaining about. When you find me sitting, I would be so lost in thoughts like I’m not even here.

There was a history to why Chisala felt so unsupported while in the hospital. She explained that when his mother passed away, Francis had moved in with his maternal aunt, Elestina. It was then that he was diagnosed with HIV. When Mapalo married Chisala, he brought Francis back from Elestina’s house, saying he now had a wife (Chisala) to take care of his children. Elestina explained to Mapalo that Francis was very sick with HIV and needed ARVs, but Mapalo did not share this information with Chisala. While Francis was with Chisala (who did not know of his condition and was not giving him the medications he needed) he developed many sores and became very sick. Francis was sent back to Elestina’s for a visit and was again taken to the clinic where they then explained his condition to Chisala, informing her that he needed help and continual ARV medication.

Chisala felt abandoned. Francis’s body showed that she was not a good caregiver, that she had a bad heart. But Chisala felt she did not have the knowledge needed to care properly for Francis from the start which was further demonstrated by his biological maternal family not providing support for Chisala and Francis while in the hospital. She felt the need to keep her own heart, support herself, keep to herself. Mapalo had not been forthright about Francis’s HIV+ condition. Chisala had not understood how sick Francis was. When Francis became sick with tonsilitis and was then found to have TB, Chisala was not given all of the information on what that condition meant or how to properly give Francis the medications, leading to an overdose and a poisoning of his liver. Despite the fact that Francis had biological family in Ndola, they would not support Chisala. This highlights the ways women kin, whether stepmothers, biological mothers, or grandmothers, are compelled to be bedsiders with their children and stepchildren in the hospital. Even if abandoned, alone, and financially precarious, these women are prevailed upon to continue the duties of caregiving.

Conclusion

Heart is fundamental to the functioning of ADCH. It is difficult to walk into ADCH or talk to staff or bedsiders without hearing the word heart. Heart has become “a collective project, a collective representation” for understanding bedsiders’ interactions within this Zambian clinical space (Good 1977:48). Reliance on bedsiders having a heart for the care – empathetic, eager, and patient – has been fundamental to the functioning of ADCH due to resource fluctuations and shortages. In such a context, staff and bedsiders consider heart critical to good care. But we also found that heart was used as an idiom of distress, revealing the ways in which bedsiders struggled with the expectations and role of being primary caregivers to children (Nichter 1981, 2010). Holding both analyses together and examining the multiplicity of ways people use and invoke heart offers insight into the individual experiences of people struggling to support kin in the hospital and the hospital’s reliance on the informal labor of bedside caregivers.

This paper has shown three things. First, hospital functioning at ADCH is reliant on bedside caregivers. Second, the pressure placed on bedsiders to provide care puts individuals in a difficult position of performing and managing their affective states to ensure quality care while also maintaining social networks within and outside of the hospital setting. Third, the dark side of heart offers important insight into the struggle of providing quality care while also ensuring those acts of caregiving are also publicly perceived to be “good” care. The success of this performance of care is largely determined by gender roles and expectations, kin relationships, and bedsider access to social and financial support. Bedsiders struggled to manage experiences of sadness, grief, loss, financial strain, and uncertain futures against the need to outwardly be seen as full of empathy, sympathy, and eager to help. Bedsider wellbeing suffered because of this dual obligation.

Our analysis of heart, in which we show that there are two sides to heart—a positive and a negative – makes a larger point. The negative side is reliant on the positive. That is, the positive side of heart is what drives people publicly, but privately, the negative side of heart must be managed or hidden so that the positive side might be publicly acknowledged and mobilized. Structural factors, such as limited hospital resources and restricted access to medical technologies, have created not just a reliance on bedsider caregiving, but also on bedsiders’ hearts, in ways that leave bedsiders vulnerable to exhaustion, distress, and social isolation.