An Exploration of How Parents Did Waiting for Their Child’s Transplant: Inpatient,Outpatient,and Home Space-Times

Abstract

Current evidence shows that waiting for a child’s solid organ, stem cell, or bone marrow transplant can cause social, emotional, and psychological suffering for children and their families. Despite waiting being a central theme, little research has investigated what families do while they are waiting in hospital and home settings and what daily life looks like in these contexts. This narrative ethnographic study explored what waiting may look like for parents of children waiting to receive a solid organ, stem cell, or bone marrow transplant drawing on the notion of space-time. Six parents from four different families participated in interviews and observations that explored the questions: How do parents wait on a daily basis and what does waiting look like in the hospital and home? Our narrative analysis suggested that the structure, rhythms, and flow were complex and diverse in the hospital and home space-time. Inpatient space-time could afford parents comfort by having expectations managed, while unpredictability of outpatient space-time caused immense stress. Waiting at home was a paradox in that it could be busy, monotonous, and isolating. Findings contribute to conceptual and practical work exploring how parents do waiting for their child’s transplant on a daily basis and how they can be supported when they enter into unfamiliar illness narratives.

Introduction

Waiting is a part of life. It is inherent to the human condition. Currently, among the primary experiences of waiting processes that have been studied are waiting in line (Maister, 2005), for asylum and refugee status (Bjertrup et al., 2018; Brekke, 2004), for weight loss (Glenn, 2013), and for test results and in acute care settings such as the emergency room (Fadyl et al., 2020; Jardine, 2017). Researchers have explored narratives of waiting by examining liminal processes—uncertain and transitional spaces—both more generally and in the context of life-threatening illnesses (Bruce et al., 2014; Janusz & Walkiewicz, 2023; Jordan et al., 2015; Lotz et al., 2017; Turner, 1969). Further, some studies have shown that waiting has multiple dimensions including affective, sensorial, embodied, spatial, relational, and temporal (Aghahosseini et al., 2017; Baker & McWillam, 2003; Fadyl et al., 2020; Smith, 2022; Smith et al., 2023, 2024; West et al., 2020), all of which can impact how waiting is experienced in health and medical contexts and how narratives of waiting are stored in the body (Fadyl et al., 2020; Smith, 2022; Smith et al., 2023, 2024; West et al., 2020). For instance, Fadyl et al. (2020) used a posthumanist lens to qualitatively observe the design and flow of affect in hospital waiting areas and described how “waiting is not simply stillness or pause. Waiting is an event that continually participates in becoming” (p. 66). Specifically, researchers observed how waiting rooms are in a process of becoming home-like spaces that play host to intimacy, moments of connection, and everyday routines. One of the most compelling definitions of waiting is offered by Adam (1990), who states that waiting is “an embodied and social practice, which infuses our unconscious affect and pervades questions around expectation, expertise and authority” (p. 122). This definition highlights the practice or the doing of waiting. Although this literature provides insight into the organizational structure and science devised to understand waiting and a glimpse into the daily practice and felt-reality of waiting, rarely are stories about how people wait in long-term uncertainty with chronic illnesses showcased in transplant contexts specifically. In this article, we describe a study that examined how waiting was done and practiced by parents, and how they organized themselves in waiting, with a child awaiting a solid organ (liver, kidney, pancreas, heart, lungs, bowel, and intestine), stem cell, or bone marrow transplant (hereafter collectively referred to as “transplants”). Waiting is at the forefront of the transplant process, yet the day-to-day practice of waiting and how people actually do waiting has been largely overlooked as a focus of study within transplant contexts. Moreover, there is evidence that waiting for a child’s transplantation can cause immense distress and low quality of life for parents with long-lasting mental, emotional, and social health impacts (Anthony et al., 2010; Derrington et al., 2016; Lewis et al., 2014; Mantulak & Nicholas, 2016; Smith, 2022; Smith et al., 2023, 2024; West et al., 2020; Young et al., 2003), yet little research has explored waiting in any depth. There can be a significant difference in the length of waiting for a transplant between bone marrow transplants (one month to two years; Beckmann et al., 2021; Stanford Medicine Children’s Health, 2023) and organ transplants (months to years before a donor/organ becomes available; London Health Sciences Centre, 2023; McDiarmid et al., 2008); however, both contexts offer the possibility of a high risk of death for the child along with other, sometimes severe, medical complications (Anthony et al., 2014; Beckmann et al., 2021). In both transplant contexts, families can wait in the unknown while trying to adapt to a new narrative trajectory of waiting in uncertainty of their child’s life or death.

The purpose of this article is to demonstrate how parents practiced waiting for their child’s transplant, what they did while waiting, and what waiting looked like in three different space-times—inpatients (care required a hospital stay), outpatients (care does not require a hospital stay), and in the home. We define space-time as a physical, emotional, and/or social space that can be bound by linear periods of time. This definition emerged from the data through numerous discussions with Kristina’s PhD committee. Initially, Kristina used the separate concepts of space, place, and time to describe waiting experiences. While we acknowledge that these three concepts have rich conceptual roots within the sociology, health, and illness literature (Gieryn, 2000; Horton & Kraftl, 2005; Sharma, 2014), none adequately captured the movement, rhythms, sensations, relationality, and temporality of waiting described in the data, nor the physical spaces and their associated meanings. In providing these narrative accounts of waiting, we contribute to conceptual, methodological, and practical work exploring how waiting can be done and felt in different waiting space-times and the impacts on parents’ waiting experience. We begin with a discussion of the study’s narrative ethnographic methodology and methods and our conceptual framing before exploring the results of how parents experienced waiting for their child’s transplant in the three different space-times as well as the rhythms and flows within each setting. We end with what parents’ waiting experiences can teach about waiting and discuss conceptual, methodological, and clinical implications.

Methodology and Methods

This narrative ethnographic (Gubrium & Holstein, 2009) study exploring the “doing” of waiting draws on data from a larger 17-month study from Kristina’s PhD exploring the experience of waiting for a transplant and in palliative care among children with life-threatening illnesses, as well as the experiences of their families and healthcare providers (HCPs). Narrative ethnography explores how stories, bodies, contexts, discourses, and symbols are studied in local and specific contexts (Gubrium & Holstein, 2009). This modality of research is about understanding what is being said, within which socio-material contexts (e.g., homes, hospitals, and broader social structures), and how stories are learned and interactionally produced frames of reference (e.g., through relationships, illness, laws, ethics, and policies). By investigating what storytelling conditions are present, how stories emerge, and how they interact with each other through peoples’ lived experiences in context, narrative ethnographic researchers can explore the social dimensions of narratives and how these dimensions are produced over time.

Our analysis was informed by Blumer’s (1931) “sensitizing concepts” approach to explore parents’ experience of waiting. Blumer advocated against entering research with predetermined theoretical commitments so as to not limit researchers’ interpretation of the data. Instead, he proposed using theoretical concepts as flexible orienting tools rather than rigid analytical frameworks. Throughout the study, the concept of waiting (how it can be done with self, others, in spaces-times) served as a guide without acting as a directive for how we perceived the narrative data. This concept helped guide conversations, observations, and sense making, and was developed and adjusted as Kristina spent time with families.

Participants

Research Ethics Board approval was obtained from the institution where the study was conducted and all participants provided informed written consent prior to enrollment in the study. Purposive sampling was used to recruit parent participants from a homecare agency in Southern Ontario, Canada. Recruitment was facilitated by two nursing supervisors at the homecare agency, in which they would reach out to families that met the inclusion criteria (see below), using a script provided by Kristina that shared the purpose and methods of the research. Parents were excluded from the study if they felt overly burdened or stressed by their child’s illness or life circumstances, as determined by the nursing supervisors’ assessment or parental self-report. If parents were interested in participating or wanted to know more information, the nursing supervisors passed on their contact information to Kristina to be able to reach out by telephone. During the telephone call with parents, Kristina talked about the study in more detail and answered any questions. If parents were willing to take part in the study, we organized a date and time to meet to complete the parent and child assent or consent form, depending on the age of the child, as well as to complete our first of multiple interviews. The identities of the consenting parents were not disclosed to the homecare agency staff, except for the two nurses working with the consenting parents. All the parents that met the inclusion criteria participated in the study. One parent was contacted by a nursing supervisor and was deemed to be unduly stressed and burdened, and thus did not meet the inclusion criteria. The fourth participating parent was recommended to Kristina by another participating parent and their child was no longer receiving services from the homecare agency.

Parents could be included if their child was between the ages of birth to 17 years with a life-threatening condition that required a first or subsequent transplant. Parents needed to be English-speaking, and they were excluded if they were deemed unduly stressed or burdened as noted above. Informed consent was ongoing, with Kristina maintaining regular dialogue about consent throughout the study, engaging with parents about their continued willingness to participate and their well-being, recognizing the intensive caregiving demands they faced. All four children (three boys and one girl), ages three to nine years old, received either bone marrow or kidney transplants from non-familial or familial donors. ¹ Children with familial donors waited several months after being listed for a transplant, while those awaiting non-familial donors waited approximately one to two years for a match and transplant. All children were diagnosed with a life-threatening illness before one year of age, and all parents were informed that their child might need a transplant at some stage. Parents were asked to reflect on their experiences prior to their child receiving the transplant even though all the children had already received at least one transplant prior to their participation in the study. All names (including hospitals) are pseudonyms.

Data Generation

As part of a rigorous narrative ethnographic approach (Smith, 2022; Smith et al., 2023, 2024), Kristina conducted fieldwork over the course of 17 months. Fieldwork involved extensive in situ immersion with each family using multiple methods of engagement including field notes, observations in inpatient and outpatient settings and homes, and interviews. This article is focused on the analysis of data collected through interviews with six parents (two fathers and four mothers) from four different families and supplemented with field notes/observations as described below.

Fieldwork

Kristina conducted home and hospital visits one to two times per month with each family. The visits involved a range of interactions with families such as playing with the children, informal conversations with parents and siblings about day-to-day life, humorous and joyful stories, and the medical and waiting process in different environments. Home and hospital visits did not always include an interview. Home visit durations varied based on parents’ availability and energy, ranging from one to five hours with an average of two and a half hours. Hospital visits lasted approximately one hour. Recognizing that parents might hesitate to indicate when they were ready to conclude visits, Kristina suggested ending a visit when she observed declining energy in parents and/or children. Kristina made every effort to respect families’ time and energy and upheld flexibility and accountability in her approach (e.g., showing up on time for planned visits). By participating physically, socially, sensorially, cognitively, emotionally, and empathically in home and hospital life with families, and adopting an observer-as-participant role (Angrosino, 2007), Kristina was positioned to question what day-to-day waiting looked like for parents. Kristina took detailed field notes and analytic memos after each home and hospital visit. These included details regarding how space-times shaped parents’ experience of waiting, what stories parents told of waiting in different settings, and the feeling of waiting in different settings. Kristina used evolving guiding questions (see questions in the Interviews section) and sensitizing concepts (e.g., waiting) to facilitate her field notes as well as reflective questions such as how Kristina was feeling in her engagements with families in different space-times. These field notes and observations helped inform the questions for interviews with parents.

Interviews

The interviews were composed of predominantly open-ended questions and were semi-structured to afford a reciprocal process in which the researcher and participants co-constructed knowledge together (Sparkes & Smith, 2014). Kristina asked parents how they experienced waiting in the home and hospital. For example, Kristina asked parents questions such as: “What did waiting feel like in the home/hospital?”, “What did waiting look like day-to-day? In the home? In the hospital?”, and “What did you do in waiting?” Three to six interviews, each between 45 minutes to 2 hours, were conducted with the parents from each family.

Data Analysis

A narrative analytic approach (Gubrium & Holstein, 2009) was used by the research team to interpret and make sense of the data. The research team included people with expertise in narrative and ethnographic methods, bioethics, childhood disability, pediatrics, chronic illnesses, and clinical practice. During data generation, the research team developed a flexible set of questions to guide and support analysis, including: What do parents’ experiences tell us about waiting in different settings? What are the rhythms and paces of different settings, and how are they involved in producing narratives of waiting? The primary analysis was conducted by Kristina, who transcribed all interviews and took field notes regarding evolving narratives or recurrent ideas about how waiting was done. She then created a half page narrative summary of each interview that focused on what day-to-day waiting looked like in the home and hospital. After re-reading all parents’ transcripts and field notes multiple times, Kristina developed a set of flexible, evolving codes to guide analysis. She took notes both on the transcripts and in a separate notebook, documenting striking information and observations related to guiding questions developed during data collection. Kristina then went back to the codes and field notes specific to each interview transcript and compared within and across parents to develop the emerging narratives about waiting and how it was done. Her preliminary analyses were then shared with the research team who suggested alternate interpretations or representations and additional lines of inquiry.

Rigor

Several strategies enhanced the study’s procedural and analytical rigor (Tracy, 2010). Kristina engaged in long-term field immersion which facilitated rich, complex data. We purposefully partnered with parents who could share stories that aligned with the research questions. Parents also participated in ongoing discussions of emerging analytical insights throughout the study. Data richness and analytical rigor were strengthened through consistent conceptual framing, multiple methods, and the maintenance of an audit trail. The research team comprised experienced qualitative researchers and clinicians with expertise in child health. Additionally, Kristina maintained reflexivity through regular memoing and team discussions to examine her own biases, values, and beliefs and their potential influence on the research process.

Reflexivity

Through methods of deep immersion, Kristina endeavored to get to know participating families and understand their experiences of waiting and what waiting looked like in their daily lives. Typically, as a way to know the lifeworlds of others, narrative ethnographic approaches ask researchers to share in what is being studied as a way to embody—bodily knowing—a particular practice (Smith et al., 2023). Through Kristina’s embodied participation in the home and hospital with her own body and felt sense, she gained a better understanding of parents’ narrative environments and storytelling conditions. However, unlike other physical cultural practices she had studied (e.g., Mixed Martial Arts for her master’s thesis; Smith, 2016), Kristina could not embody patients’ practices in the same way when it came to waiting for a transplant. She could not identify with what it feels like physically, socially, mentally, and emotionally to wait for a transplant, or to be a child or parent in such a position. Therefore, this research required Kristina to get as physically and socially close to families as possible to feel, sense, understand, and explore their stories of waiting. Although considered an “outsider” in many ways, having experienced illness within her family, Kristina was passionate about offering creative, compassionate ways for families to navigate processes of suffering that align with their highest values and beliefs. She brought a lens of curiosity, openness, transparency, and kindness to her work with families.

Results

In what follows, we present our data analysis and describe how parents spent their time in, and navigated, waiting on a daily basis under three headings. First, we describe what waiting looked like as inpatients and outpatients at the hospital, and then we detail how waiting was practiced at home. Parents’ accounts described distinct differences in the experience of waiting as inpatients, as outpatients, and at home which led us to separate waiting into these three headings. We refer to parents and their children using pseudonyms.

Inpatient Waiting

Parents’ accounts and our observations showed that day-to-day waiting as inpatients was busy and stressful as well as monotonous, slow, and a marathon to “trudge through day after day.” Whether staying for a weekend or several months, days were described by parents as filled with appointments, visits from HCPs, meetings, tests, and constant medical monitoring. Mel, Peter’s mother, said, “[i]t is like a revolving door. Someone is always coming in. You have family rounds in the morning, then the social worker might come for a visit and then the nurse …” Parents expressed frequently feeling too emotionally taxed and overstimulated to be able to sleep from the day’s activities and waiting as a whole, as Annie, Josh’s mother, described:

At night, you’re sitting in the hospital room looking at the machines but you’re not even registering them because you are so emotionally exhausted. I would just sit there and zone out and watch garbage TV.

Mel’s earlier account showed how parents were surrounded by HCPs which created a quick pace with fast movements in the space-time of the inpatient setting. Many families described their day-to-day waiting as a marathon that “they trudged through day after day” (Mel, Peter’s mother). During an inpatient visit with Henry’s family, Jody (Henry’s mother) asked if Kristina could watch Henry so she could take a quick shower as she had not found the time during their several days stay:

I walked into the playroom and it was empty except for Jody and Henry. Henry was over by the kitchen section and immersed in his toys. Jody had her papers scattered around her and her laptop resting on top of a mini wooden stool. She was wearing a baggy sweater and looked a little weary. She looked up from her work and greeted me, then asked me if I could watch Henry while she took a shower. She hadn’t showered in a few days and wasn’t sure how long the test results would take before they could be discharged. (field note)

All days were “busy,” but their rhythm looked different on different days. Busy days could feel quick in pace. However, as parents become accustomed to the rhythm and routine of the inpatient setting, the days could also feel slow.

While inpatient space-time could be overstimulating, parents also expressed that having clearer expectations, being attended to by an abundance of people, multiple activities, and numerous appointments reduced their stress. Jerry, Peter’s father, expressed:

The nice thing about it was that you know we were not going home today. The expectations were managed so well that we knew what we were doing with our day. I am not going to worry about anything else because this is what we were doing all day.

Annie, Josh’s mother, also described a sense of comfort from their inpatient stays:

There is some comfort in being there. The first time [Josh] was in the hospital [for seven months] … There is something very safe at Children’s Hospital. Everyone is taking care of him. If it is between chemo cycles and he is feeling well, it can almost be relaxing because … he is okay, the nursing staff are there to take care of him, there is food service, your needs are met. So, it is not all stressful.

Further, Mel, Peter’s mother, expressed that by having their child’s needs met, she and her husband, Jerry, could think about other parts of their life:

There was a white board in there … We would plan out our life, if we wanted to try a new [workout] routine …. How many calories I would burn by just sitting there …

The rhythms and logics of the inpatient space-time facilitated parents to feel supported and, for some parents, provided a place of refuge. Parents could let someone else (HCPs) have the control, and they could be “just the parent” rather than be in charge of their child’s medical care. When parents’ felt their concerns were being recognized and they could ease up on being their child’s advocate, the rhythms of hospital days created the space-time for parents to focus on other things like a diet and exercise routine, play games on their phones like Candy Crush, listen to music, watch TV, play with their child, and bring their other children for hospital room picnics and dinners. Annie, Josh’s mother, described enjoying “chatting with the nurses just about their family and TV shows. I got those normal interactions that you don’t get with Jamie [her husband].” As Josh’s parents demonstrated, waiting as an inpatient with an expected schedule could reduce uncertainty and enabled parents to access a part of their lives that was familiar (“normal”) such as watching TV shows and having everyday conversations with other people. The structure of hospital space-time supported parents’ expectation management in that they had an idea of what was coming (e.g., appointments, tests, and check-ups), which facilitated them to relax and feel comfortable with their HCPs and teams being in control of “what to do.” Parents’ accounts illustrated that having the medical responsibility removed for that time period could reduce stress.

Although parents, at times, sunk into the rhythms of the inpatient busyness and days could feel slow, and monotonous, there was still a level of stress experienced each day. Parents described feeling “on all the time” because, as Annie, Josh’s mother, expressed, she and Jamie, her husband, were either anticipating an emergency or there was an emergency. A stressful day could be caused when there was a disruption to the rhythms of a busy day:

… all of a sudden in the middle of the night all the lights would come on and you’re totally disoriented and they say, “oh he has a fever and his heart rate is elevated we have to call …” and all of a sudden there is a whole friggen cast of characters, and an emergency response team … you’re sitting there at 2 am waiting for the oncologist on call to come. It’s days and months of this and it is insanity. Everything is an emergency.

As Annie described above, in an emergency, there could be an acute influx of HCPs rushing into families’ rooms to attend to their child as compared to a steady pace of people coming and going in the room the rest of the day. This sharp change in people and of pace and movement could create stress for parents. Emergencies appeared to significantly change the rhythms and logics of the space-time which organize the movements of people in and out of the family’s inpatient room. The contradictory experiences of parents suggested that the inpatient waiting process was both busy and monotonous as well as relaxed and stressful.

Outpatient Waiting

Outpatient waiting was a space-time that was mostly dreaded by the parents as it was unpredictable and replete with unknown time limits. Parents described the painstakingly detailed preparatory routine of driving back and forth to the hospital from their homes (up to two hours in one direction), waiting to find parking, paying for parking, and planning their meals for the day. Once in the outpatient setting, some parents explained that they stayed in the playroom and conducted their work from there while they were waiting for their child’s blood or other test results.

The outpatient experience was expressed as unpredictable across all parents’ accounts. Peter’s parents said:

Mel: (these outpatient) [d]ays could be 2 hours or a weekend stay. We kept an overnight bag in the car. You would show up, you would have to wait and give bloodwork, then see the doctor, so that could take half an hour, then you had to get … some transfusion of something … waiting between appointments and for appointments. You’re always waiting for something … You just wanted to get out of there, and ideally before rush hour to get home for 4 pm. All it would take was … the medication would be delayed, and it would come 4 hours later … You’re watching the clock and trying to keep [Peter] entertained … They were just marathon days, they were exhausting. We were always cranky.

Jerry: Sometimes we would have days where we would … just have blood drawn … then all of a sudden, “oh, he has a fever we got to keep him here and start antibiotics” and now we are here for 72 hours.

Mel: We wish we knew how long it was going to be so that we could just accept it instead of this idea of thinking it’s going to be a short day and it being a marathon day. There were days when we wanted to ask the experts a few questions and we would have to wait and see if we could see that person. They might be out of town or unavailable and we are just waiting and that was stressful.

As evidenced from Mel and Jerry’s quote, outpatient waiting could be unpredictable, with empty time spent waiting around for something to happen. Parents were waiting “for something” with unknown time limits with the tension that an event could happen at any moment during the wait (delay, emergency). This unpredictability could cause stress. Parents did not seem to have their expectations managed by HCPs in the same way they did as inpatients. Outpatient waiting rhythm was interrupted in that it could flow (two hours visits, no delays, speaking to “experts” to answer questions) and it could flatten out during long stretches of waiting for something. Parents’ stress appeared to be created from the unknown of what event (delay, emergency) might arise during the empty time created in outpatient space-times. It was the empty time that was full of possibility, holding numerous directions for parents that created the circumstances for unpredictability.

Waiting at Home

Waiting at home seemed to be a paradox in that it was both regimented and busy, as well as monotonous, and isolating. Josh and his family were home in isolation for one year after his first transplant and Annie (mother) described their household routine:

… nurses coming into your house every day to administer drugs [and daily overnight nursing] … We had a routine when the kids (Josh’s siblings) would come home from school, they would immediately wash their hands, use hand sanitizer and wash their clothes and put on new clothes.

Annie’s quote illustrated not only the relational busyness of people coming in and out of their home but also the disciplined and vigilant routines they adopted to protect Josh, which added to their sense of busyness. Doreen, Shayla’s mother, described their “lives being bound by Shayla’s schedule and regular medical appointments” (field note), with these appointments having a rhythm of their own. Jerry, Peter’s father, explained how they were bound by a schedule:

We were tied to giving [Peter] his medication all the time and feeding him … Everything was very scheduled … We had to give him gravity feed bags of a slow drip that would take a few hours … by the time you finished you had to feed him again. We had to administer medications eight times a day. It was non-stop to make sure he got what he needed. You might have half an hour to go have a shower or something while someone else watched him.

Waiting at home could also be monotonous for parents in that they felt that they were living the same type of day over and over again. For this reason, Doreen, Shayla’s mother, described waiting as being on a “hamster wheel”:

You’re just in the hamster wheel, the same situation keeps playing out for you in different ways. If you knew that something was going to end, you can mentally prepare for when you are going to come up for air, but you can’t with this.

Doreen described feelings of living the same situation repeatedly, and often expressed feeling overwhelmed by the uncertainty of an unknown end, or if there was an end, with Shayla’s illness. Further, Jerry, Peter’s father, described waiting at home:

[Before illness] we were having clearly defined work weeks and weekends. Everything was marked by, “ok what is the next weekend and workweek…” You always have something, and you always know what day it is. The days [after illness] were fairly monotonous in that we were so limited in what we could do. I don’t know, we did nothing! Days and weeks blurred together.

Jerry’s quote highlighted the loss of definition and boundaries, and the space-time was no longer “marked by” something in waiting. As a result of space-times becoming undefined, periods of stillness were created through monotony. Both Doreen and Jerry’s accounts exemplified how parents felt that nothing was happening in their lives—they were not moving forward or backward. Rather, parents were living a life lacking narrative coherence (i.e., deviation from expected/familiar narrative) that was defined by unpredictable emergencies, random busyness, and days of monotony.

Despite round-the-clock nursing support, parents experienced long stretches of isolation. Mel and Jerry, Peter’s parents, lost connection with friends and family for several years, and adopted an isolated lifestyle to protect Peter as he was immunocompromised before and after his first and second bone marrow transplant. Mel described this space-time:

… we went into total lockdown. If he [got sick] again, he could die within 24 hours. So, we chose to live in isolation as if he was prepping for the transplant. But we basically lived this way until recently, since he had his second transplant … We would get our parents to go grocery shopping for us, or family members. We didn’t go [to the grocery store] after that and certainly not with Peter … The people who did come over could not be sick at all, had to wash their hands, they had to sit on the other side of the room from Peter, they had to isolate themselves for a few days before they came over.

The mundane, everyday tasks such as going to the grocery store became a threat and a potential harm to Peter and his parents. Fortunately, they had the support of family members while they were in isolation, but not all participating parents had this support, further adding to the stress and loneliness that could be a part of waiting at home. Mel, the mother of Peter, expressed that she both loved and resented her home because they had joyful memories, but it was also filled with pain and felt like a “prison.” Mel and Jerry were thinking about moving near the end of our engagement together.

Despite the challenges of waiting at home, all parents preferred waiting in their own homes to inpatient and outpatient settings. However, at home, parents could not just be parents like they were able to be as inpatients, and therefore, they found waiting at home more exhausting.

Discussion

Parents’ narrative accounts suggested that waiting for their child’s transplant is complex, in part, because it is full of contradictions and made up of a multitude of rhythms and paces that change in different space-times. Parents learned to live with space-times that were full of possibility while navigating a disrupted life course with a new and unfamiliar narrative trajectory. The busyness and overstimulation in the inpatient space-time could leave parents exhausted and unable to rest but other times the rush of movement created by HCPs helped parents feel safer, comforted, and “just parents” as a result of letting others be in charge of their child’s medical care. It was these contradictions that made waiting, at times, more tolerable. Similar findings were shown by Alzawad et al. (2020) who qualitatively explored parents’ experiences in a pediatric intensive care unit (PICU). Despite parents’ reports that the environment was stressful and uncomfortable to be in, they also expressed feeling safer and peaceful in the PICU as they felt there was no better place to be for their child to receive care. In our study, parents welcomed moments of not needing to be their child’s caregiver and felt comforted that their child was being taken care of, medically, which facilitated their ability to just be parents. Providing ways to promote ease for parents through environments, care, and/or relationships is crucial because, as we have shown previously, the waiting process for transplantation can bring chaos, mental health issues, and relational dysfunction for parents while they are also navigating life and the threat of death with their child (Smith, 2022; Smith et al., 2023, 2024).

Another strategy that supported parents’ waiting was for HCPs to manage parents’ expectations, particularly in outpatient settings, by sharing information on the activities and pace they could anticipate for the day—including set appointment times, tests, and frequent communication with parents. Maister (2005), a leading scholar in the service management industry who theorized the psychology of waiting, showed that managing one’s expectations was a coping strategy for patients waiting in uncertainty. Jardine (2017) explored the psychological experience of waiting in emergency rooms and found that when patients were provided with limited information early on in their hospital encounter such as how long their wait may be or what they are waiting for—an uncertain wait—they perceived the wait time to increase. Parents in our study indicated that regular check-ins from staff and clear communication about discharge expectations—including what staff are waiting for before parents and their child can be discharged—could help manage expectations, reduce stress, and ease the chaotic and unpredictable rhythms of waiting in the outpatient setting.

Home-based waiting differed from the rhythms of in- and outpatient waiting in that it could be busy and scheduled with many medical responsibilities for their child. Carnevale et al. (2006) who qualitatively explored the experiences of families with children who were ventilator-assisted and living at home reported how parents were stressed and overwhelmed by the responsibility and vigilance that was necessary to care for their children at home. At times, parents felt they were “stuck” in the home (Carnevale et al., 2006, p. e53), while other researchers showed parents felt imprisonment in their homes while caring for their child with a disability (Brinchmann, 1999). This aligns with Mel and Jerry’s expression that their home felt like a prison—a space-time they both resented and loved. Similar to Carnevale et al. (2006), Woodgate et al. (2024) reported that parents had minimal time for activities outside their child’s rigidly scheduled medical care and needed additional services and supports to navigate their intensive parenting roles at home. This home-based vigilance reflects what Sharma (2014) conceptualized as “temporal labor”—the work of maintaining others’ time and temporal needs—in her work on the contemporary politization of time and temporality. In our study, parents became constantly “on-call” and living according to their child’s medical timeframe. Similar to the service workers in Sharma’s study who performed temporal labor for others, parents found themselves bound by the temporal structure of their child’s illness with constant monitoring, scheduling, coordinating care, and engaging in a labor of love that consisted largely of waiting. Geense et al.’s (2017) work with children with chronic kidney disease illustrated how parents may need informal caregivers, such as family or friends, who could learn skills such as tube feeding to support their child’s medical care at home, as well as practical home support to help with everyday housework (e.g., cleaning). By having these types of support, parents expressed they could have more time to themselves and relax (Geense et al., 2017). Similarly, we showed how parents embody and practice multiple roles at home such as parents, partners, and medical caregivers, and therefore, informal or formal caregiving supports can help parents to feel their child is taken care of, similar to when they were in the inpatient setting, and provide some relief for parents.

In contrast to the busy nature of home, our findings suggested that parents simultaneously felt that nothing was happening in and with their own lives. While there is very little literature on the actual doing of waiting, Brekke (2004) qualitatively studied how people seeking asylum wait on a daily basis and found results similar to ours. Participants described their waiting as “directionless time” (p. 28), in which they were living a life with no specific direction—caught between the past and the future and living a temporary existence. Similar to the unknown and uncertain outcomes described by Brekke, our study highlighted that suffering could stem from the disruption of time, or the boundaries around it, as illustrated by Doreen’s experience of living in a “hamster wheel” and wondering when this sense of waiting would end. Waiting, therefore, can be temporally experienced as a lived experience of time.

In a focused ethnography using short-term, non-continual field immersion, Zitzelsberger et al. (2014) explored how children embody the temporal, spatial, and technological aspects of a hemodialysis unit at a hospital. Their work illustrated how medical spaces can create distinct temporal rhythms and spatial boundaries that separate children from their typical social environments. This spatial–temporal disruption is similar to how parents in our study experienced separation from their expected life trajectories and familiar narratives of how to live. Additionally, Fadyl et al. (2020) demonstrated how acute care waiting areas can become temporary hosts to people who have been removed from their daily lives, placing them into an in-between (i.e., liminal) environment that is organized around medical processes. Our previous work exploring the sensorial experience of parents waiting for a child’s transplant (Smith et al., 2023) and Carnevale et al.’s (2006) study on caring for ventilator-assisted children described the sense of isolation and loneliness that parents can feel as a result of being at home and feeling their lives were on pause while observing the lives of their friends “move on” in a familiar, expected narrative trajectory.

In the current study, we showed the paradox of feeling still and yet being on a hamster wheel which contributed to the lack of narrative coherence that parents experienced in waiting as in- and outpatients and at home. Parents’ accounts illustrated the deviation from an expected, linear life trajectory, what Bury (1982) refers to as biographical disruption. Bury’s (1982) model of biographical disruption showed how illness can be a disturbance of everyday social, physical, and emotional life and has been a dominant way of conceptualizing the nonlinearity of the illness trajectory. Building on Bury’s work, Aasbø et al. (2016) explored narrative incoherence in partnerships where spouses care for partners with chronic obstructive pulmonary disease, illustrating the biographical disruption of we rather than individually defined life paths. Similar to our parents who described lives of isolation and vigilance while waiting at home, Aasbø et al. showed couples attempting to “hold on to [their] old ways” as illness slowly disrupted their shared life, shrinking their social networks and limiting daily practices such as being outside, eating, laughing, and talking (p. 787). Frank (1995) and Charon (2017) have contributed significant narrative work to understanding how illness can disrupt expected life trajectories and how HCPs can work with patients and their disrupted narratives. Given that there are few focused stories about waiting, it is paramount for biomedicine to contribute to a dialogue about stories of nonlinearity such as in some contexts of waiting with chronic illnesses. By expanding and diversifying the narratives told within healthcare, the better HCPs, researchers, and bioethicists can recognize and attend to parents and families in stressful, unknown, and uncertain processes of waiting with illness.

Although the focus of this paper was not on parents’ mental health, we showed the different rhythms and paces within three space-times and demonstrated how these environments and their activities can impact parents’ multi-dimensional health (mental, emotional, physical, social). By sharing accounts of how parents experience waiting and what they do while waiting, we hope that these stories may act as a resource for other families and HCPs to shed light on the complexities of waiting in order to better tailor supports for parents’ multi-dimensional health. Throughout this study, we heard from parents about their desire to hear and see more stories of what waiting for a transplant could look like from other families. As we have advocated for in previous work, the lack of supportive and guiding stories that families have access to while waiting for a transplant can make waiting feel bleak and uncertain and directly impact their mental health (Smith, 2022; Smith et al., 2023, 2024).

Our research is one of the few long-term narrative ethnographic studies in child transplantation and has conceptual, methodological, and clinical implications. The methodology facilitated an embodied engagement with how parents did waiting on a day-to-day basis and what waiting looked and felt like in different space-times. This contributes to a richer conceptual understanding of how waiting during child transplantation can impact parents and provides an invitation to develop more multi-dimensional resources for them in clinical environments and at home. Further, our narrative ethnographic approach and its multiple methods (observations, field notes, and interviews) afforded dynamic, layered narratives that highlighted the complex, contradictory experiences of waiting. More work is needed to understand how clinical and home environments can be adapted to better meet the needs of parents who are navigating complex, uncertain waiting processes.

Our study focused on waiting, child transplantation, and parents in Canada; however, further exploration of waiting processes in other health and illness contexts such as child disability, palliative care, and chronic illnesses is needed. Three families were White and spoke fluent English, and all families were well-educated and from middle-class backgrounds, representing a relatively privileged position. While the impacts of marginalization were not a focus of this study, future research exploring how inequities can impact how waiting is experienced on a daily basis and what supports may help parents would be valuable. For example, unlike our findings, not all parents may feel as sense of safety and comfort within hospital settings, especially if they have experienced racism, discrimination, sexism, and stigmatization. Additional work examining how diversity and marginalization influence waiting experiences is important for developing more inclusive and equitable practices.

Conclusion

In this article, we have contributed to a small body of work on the experience of waiting with a child’s life-threatening illness in different space-times through long-term narrative ethnographic immersion. We showed that waiting was replete with contradictions in that waiting was and-both, not either-or. Waiting at home could be simultaneously busy, unpredictable, monotonous, and still. Parents experienced suffering as inpatients and were also comforted by their interactions at the hospital. A home could feel like a prison and also be full of love and joy. It is this balance of “ands” that adds to the complexity and depth of waiting as a process in different space-times, as well as its narrative inconsistency in parents’ lives. The accounts presented in this article are not a definitive reading of the path through waiting but a way to think about waiting. We hope that other researchers, HCPs, and families will add to these narratives through empirical work and reflection, further lighting the way forward for future families going through uncertain processes and the HCPs guiding them.