“100 Things I Wish Someone Would Have Told Me”: Everyday Challenges Parents Face While Caring for Their Children With a Tracheostomy

Abstract

Equitable access to appropriate care, emergency department services, and in-home support aids are needed to minimize the occurrences of adverse events that have a significant impact on families. However, many families of children with medical complexity (CMC) lack consistent care due to issues of health inequity. We conducted 11 qualitative interviews with primary caregivers who were asked about their experiences of providing care to children who have a tracheostomy and are supported by multiple life-saving machines at home. Guided by ecological systems theory, we identified three themes that contextualize the lived experiences of the participants who expressed needs that arose from poor interactions within the mesosystem. Findings convey participant frustrations that result from insufficient support, ineffective training, and inadequate healthcare coverage. Although each theme is organized systematically to emphasize specific concerns within the mesosystem, together these themes emphasize the inextricable relationship between daily needs with systemic barriers to care. We provide a discussion of these needs with a broader context that also impacts the perceived quality of care among families managing the needs of their children who are supported by life-saving technology. By addressing existing challenges and identifying opportunities for improvement within the healthcare system, we seek to contribute to the collective effort of advocating for ethical systemic change on behalf of CMC and their families.

Introduction

Children with medical complexity (CMC) refers to a diverse group of pediatric patients who have chronic multiple and severe medical conditions (Gallo et al., 2021). CMC typically have a combination of medical, developmental, and functional needs that impact various aspects of their lives (Edelstein et al., 2017). In particular, children who have undergone a tracheostomy represent a complex cohort of CMC patients due to their sustained reliance on medical technology for long-term survival. Pediatric tracheostomy is a life-saving procedure for children with severe respiratory compromise or upper-airway obstruction (Yilmaz et al., 2022). Approximately 4000 children in the United States undergo tracheostomy yearly, with a mean age of 3 years (Hartnick et al., 2017).

Although children with tracheotomies are living longer because of advances in technology (Berry et al., 2013; Burns et al., 2010), significant health issues associated with the tracheotomy are steadily increasing in the United States. It is estimated that CMC contribute to 20,000 hospitalizations annually (Zhu et al., 2015). Within the first 6 months of receiving a tracheostomy, 60% of CMC are readmitted to the hospital for a tracheostomy-associated respiratory infection (Graf et al., 2008; Zhu et al., 2015). Additionally, children with tracheostomies often require complex and coordinated medical care from multiple healthcare providers (Gilspen et al., 2022; Morrison et al., 2022). Gill et al. (2021) report that children with complex conditions account for billions of dollars in medical costs annually, and among the costliest conditions are respiratory failure and pneumonia. However, reasons behind the frequent hospitalizations and emergency room visits are still not fully understood (Gill et al., 2021; Gipsman et al., 2022; Morrison et al., 2022).

Despite the increasing prevalence of pediatric tracheostomy, families do not receive the support they need throughout the trajectory of care. Instead, they are entered into a healthcare system that is rife with ineffective communication pathways that ultimately contribute to compounded feelings of fear, distrust, and overwhelm (Foster et al., 2019; Mai et al., 2020; Nageswaran & Golden, 2017). Furthermore, the care CMC receive is not isolated to the hospital environment (Feudtner & Hogan, 2021; Lin et al., 2020; Morrison et al., 2022). Rather, children with tracheostomies necessitate specialized care, monitoring, and maintenance from their medical team as well as their primary caregivers and community support networks (Foster et al., 2022; Lin et al., 2020). Given the steadily increasing prevalence of readmissions and rising healthcare costs, scholars are working to conceptualize innovative frameworks that supplement existing medical models to better facilitate support with patients and caregivers (Allshouse et al., 2018; Feudtner & Hogan, 2021; Sonsteng-Person et al., 2023).

Through this qualitative exploration into the daily lives of caregivers of CMC, we examine the ways in which caregivers are interacting with healthcare networks. Guided by ecological systems theory, we identified three themes that focus on the interpersonal interactions between the primary caretakers and health service providers. Each theme emphasizes a particular need expressed by CMC caregivers that arose from their interactions with the healthcare microsystem. We seek to address the ongoing needs of caregivers and to inform future research aimed at building more effective connections between microsystems and throughout the entire ecological system.

Methods

The authors embarked on an exploratory qualitative research study to understand the lived experience of family members caring for a child with a tracheostomy post-hospital discharge. Physicians and other stakeholders at Children’s National Medical Center discussed the importance of improving care for CMC in the hospital and post-discharge. Their medical expertise and professional experiences provided essential background for the current study and informed the research aim(s) that guided a solution-focused inquiry that would be used to fund specific projects through an internal grant, the Children’s National Hospital Founders Auxiliary Board Grant. Through exploration into the lives of CMC and their caregivers, we learned about the interpersonal interactions between the primary caretakers and health service providers.

Theoretical Framework

Ecological systems theory (EST) (Bronfebrenner, 1986, 1994) provides a comprehensive organizational framework that encourages scholars and medical professionals to consider the complexity of interpersonal connections that form within and between healthcare subsystems (Cordon, 2013; Ginter et al., 2017). Bronfebrenner (1986) used concentric circles, each representing a subsystem (i.e., individual, microsystem, mesosystem, exosystem, macrosystem, and chronosystem), to conceptualize the complex relationships that form between individuals and their environments. At the center of the model is the individual. Next is the microsystem which represents people having the most impact on the individual (e.g., for a child, it could be parents, doctors, peers, and teachers). The relationships between the individual and their microsystems are also conceptualized within the context of the exosystem and macrosystem (Bronfenbrenner, 1986). These larger circles represent broader social influences, such as laws and policies (i.e., exosystem), societal norms, attitudes, and ideologies (i.e., macrosystems), and sociohistorical significance (i.e., chronosystem). It is important to note that the nature of these interactions, between the subsystems, is bidirectional. These interactions are what form the mesosystem. The mesosystem not only includes the bidirectional interactions but also the interconnectedness of those interactions. For instance, a home health nurse who directly interacts with the CMC also interacts with the primary caregiver. At the same time, the primary caregiver shares individual relationships with the child and the home health nurse. When considered together, these interactions and relationships represent a network of influence.

The purpose of this paper is to focus on how the interactions within the mesosystem are impacting the primary caregiver and their child with a tracheostomy. Through the lens of ecological systems theory, we present three themes that emphasize the needs of the participants that arise from interpersonal interactions between the primary caretakers and health service providers. We then continue our multilayered systematic discussion by linking the mesosystem interactions to broader healthcare inequities that exist throughout the United States.

Research Aims

The research aims of this research are three-fold: (1) to investigate the nature and dynamics of interactions within the mesosystem that affect primary caregivers of children with tracheostomies, (2) to explore the impact of mesosystem interactions on the well-being and caregiving experiences of primary caregivers, and (3) to examine the connection between mesosystem interactions and broader healthcare inequities in the context of tracheostomy care in the United States. To consider each of these aims, we asked the following research questions:

• 1. How do interactions within the mesosystem influence the experiences and challenges experienced by primary caregivers of children with tracheostomies?

• 2. To what extent do mesosystem interactions in healthcare contribute to the physical and emotional well-being of primary caregivers and their children and what are the mechanisms through which these inequities manifest at broader societal levels?

Setting and Study Participants

Data for this current study is from a larger study that sought to explore factors contributing to perceived challenges of accessing quality healthcare. This project received IRB approval from Children’s National Hospital. The IRB protocol allowed for interviews to be conducted on a HIPAA-compliant Zoom platform with caregivers from several regions in the United States. The PI sent each participant a parent information sheet and an e-mail explaining the study. Participants sent back their signed consent form via e-mail before a Zoom interview was scheduled.

Participants were recruited using purposive and snowball sampling through the “Tracheostomy” Facebook group and Children’s National Hospital internal communication. Participants (N = 11) were included if they identified as caregivers of CMC who had a tracheostomy and were supported by multiple life-saving machines at home such as a ventilator, humidifier, pulse-oximeter, suction machine, and the myriad medical supplies required for people with a trach.

Participants shared homogenous characteristics as the majority (n = 9) identified as mothers and married. All participants resided in the United States, representing eight different states. Their ages ranged from 27 to 55 (M = 36). Only one mother was divorced at the time of the interview. One female participant identified as a Latina grandmother, and she was also the only participant who did not identify as White. The only male participant was married to a fellow female participant. Although the married couple represented the same family unit, their varied roles contributed different perspectives of their lived experience for this study. It should be noted that study participants all self-identified as a primary caregiver to the child. Participants (n = 10) reported either one or two other children in the household. The age range of the children receiving care was 16 months to 11 years and one child had recently died.

Data Collection

Data was collected from March 2022 to November 2022. The first author conducted semi-structured interviews with primary family caregivers. The interview guide outlines open-ended questions used to investigate the participants’ experiences of negotiating care for their child. The interview questions were informed by experiential observations and intuitional knowledge acquired within the pediatric hospital environment, as both the first and third authors work for the Children’s National Hospital. For instance, given their background working in children’s hospitals, gaps in care were identified by the first author, and questions were selected to probe caregivers’ experiences throughout the trajectory of care for their child (e.g., Describe your hospital care experience/s, Describe everyday use and issues with care, Can you tell me a story about an emergency situation you have experienced at home?). Additionally, participants were asked about their child’s health condition (e.g., How old is the child? How long has the child had the tracheostomy? Are there any other children in the household?).

Researchers’ Positionality Statement

As the Director of a Biodesign Program embedded within a major U.S. pediatric hospital, Sherman is responsible for collecting information pertaining to patients’ clinical needs, conducting research, and co-creating design solutions with medical staff. She primarily uses qualitative methods to explore healthcare environments (e.g., hospitals and long-term home care situations) to identify opportunities for innovative technological solutions. Bower is a human development and family science scholar and a professionally certified ATLAS.ti trainer. Skilled in qualitative research design and methodology, her research focuses on resilience and well-being among vulnerable populations across the life course. Eskandanian is a Vice President and Chief Innovation Officer at Children’s National Hospital with expertise in the management of large-scale pediatric research and innovation initiatives and has been the principal investigator on private and federally funded commercialization and pediatric device innovation programs. Together, the research team’s experience working with families, clinicians, and hospital administration informs our comprehensive understanding of complex issues faced by CMC and their families who care for them. In the next section, we demonstrate how our positionalities informed our analysis and the steps we took to develop methodological rigor through reflexivity.

Data Analysis

Each interview was transcribed, and participants were given a pseudonym to maintain confidentiality. Interviews were primarily transcribed using the Zoom transcription tool; however, we also ran transcripts through Ebby, an artificial intelligence (AI) transcription platform, to assist with improving transcription accuracy (Ebby, 2023). The transcriptions were then uploaded to ATLAS.ti 9 for Mac, a qualitative data analysis software (QDAS), where we conducted the analysis of the data. In ATLAS.ti, we categorized quotations via open coding and developed a coding structure to identify major concepts within the dataset that informed the thematic development code groups (Friese, 2019; Saldana, 2016). When appropriate, we also used in vivo codes to capture the nuance of quotations (e.g., wish I had known) and remain close to the meaning of the data.

To develop an analytical framework, we used several tools in ATLAS.ti to demonstrate our methodological rigor (Bower et al., 2021; Whitaker & Atkinson, 2021). Code comments were created to strengthen the internal consistency (i.e., agreement) of our analytic framework (Friese, 2019). Each code began with a broad definition; however, as the analysis evolved, so did our definition of specific codes. For instance, during a routine team meeting, we noted that our code, Trach-Care Training, was becoming oversaturated (i.e., taking on a different meaning and becoming vague). Based on our accrued knowledge and interactions with the data, we determined we needed to split the code into two sub-codes: For Home Health Nurses and For Caregivers. By reflexively creating code definitions and auditing the meaning of the code as our understanding evolved, we demonstrate the flexibility of our analysis, while also maintaining the validity of our analytical framework (Bower et al., 2021; Friese, 2019; Woolf & Silver, 2018).

The descriptive codes were then organized into a coding structure (Saldana, 2016) by categorizing the similarity and variability across participant interviews. As we transitioned to a more conceptual phase of our analysis (i.e., from open coding to code grouping), it was important that we continued to bridle our subjectivities. To borrow from reflective lifeworld research, bridling refers to the self-interrogation of researcher subjectivities to create space for “not-knowing” (Dahlberg & Dahlberg, 2019, p. 4). For example, we each disclosed our positionalities in relation to this project, and although we each bring significant expertise to this project, we position ourselves as learners. Through memoing, team discussion of the data, and member checking, we reflected on what we learned from the participants and from one another, which in turn informed our interpretations of the data. Our conceptual memos in ATLAS.ti provided a space for us to explore the conceptual linkages between descriptive codes to further develop code groups into themes. For example, the Peer Support code group included codes such as Support Groups and Social Media Networks since both codes express the perceived availability of peer support. We then considered the meaning of each code group through the lens of EST. This was an important shift in our framework because we moved away from a description of perceived challenges to the interpreted outcomes from exchanges between microsystems. While our subjectivities facilitated our interpretation of participants’ needs, it was ultimately our analytical framework (i.e., coding structure + theory) that helped us to systematically identify three interactional pathways that contextualized the experiences and needs of the caregivers.

Findings

Across the three themes, caregivers express their frustrations resulting from insufficient support, ineffective training, and a lack of integrated care. Guided by EST (Bronfenbrenner, 1986), each of the three themes emphasizes a specific concern within the mesosystem. However, when considered together, these themes underscore the inextricable relationship between daily needs with systemic barriers to care. Through this research, we hope to raise awareness of the opportunities and challenges to better support families who are caring for CMC.

Insufficient Peer Support

This theme is characterized by the availability of peer support and its purpose within the mesosystem. Unanimously (N = 11), parents reported relying on peer support to meet their child’s needs; however, support networks were not easily identifiable and required effort on their part. Prior to leaving the hospital, caregivers expressed interest in participating in peer support programs that focus on sharing information and perspectives that are unique to parents. It is imperative to consider interactions between a primary caregiver and their child when examining the expressed need for support. For instance, Carla, who spent months in the NICU, said, “I wish there had been a support group [in the hospital]. There were a lot of trach babies in our NICU, it would have been so nice to meet weekly and talk.” Kelly also contributed to this sentiment, speaking directly to the desire to connect to “other moms who are going through it.”

The need for a particular type of peer connection is influenced by the existing relationship between the caregiver and their child. If not readily available, some caregivers explained how they actively sought out and offered peer support, thus expanding their microsystem to include another important interaction. For instance, Anne shared:

I’ve been very vocal about the need for peer support at the hospital. I offer my time for moms to come here to my house, while their babies are in the hospital. I’ve had a few moms do that, where I can show them “what it’s really like.” If I didn’t volunteer, they (the parents) wouldn’t have a clue when they got home. I’m trying to write a “how to” manual so that the hospital can give it to new parents. For example, it would explain how to set up a stroller, because no one told us how to do that in my hospital. Or how to get in and out of the car (with all the equipment). For us, daily living was a big guessing game.

In response to the lack of support groups offered within the hospital environment, most participants found peer support through online social networking groups. For instance, Genevieve shared ways in which a Facebook group helped her connect to other parents and Carla explained how social networking helped her locate and receive medical supplies and equipment for her child:

The Facebook group was the biggest help ever, they were amazing ... people are always giving away free items. The rule is we only pay for shipping. With all the trach supply issues the “underground medical supply share” has been a lifesaver for many families, including us.

Doug countered that while Facebook groups are great, they also make parents aware of the stark reality: “Man, you see all the horrible stuff … people who are living it like you.” Tracheostomy Facebook groups also seemed to contribute to parent anxiety, since it is a constant live stream of problems parents are experiencing with their child’s health rather than a peer-information list-serve one can search for a particular problem.

Sufficient support can mean the difference between life and death for CMC with a trach. However, it is not the only factor. In the next section, we examine another need for support from trained medical professionals.

Ineffective Trach-Care Training

This theme is characterized by the availability of medical support and the range of influence it has on the lives of CMC caregivers (and CMC). This theme is broken into two subthemes that address distinct gaps in communication. First, we present the inadequacy of training provided to the family caregiver and then ineffective professional training for the home health nurse. Similar to the previous theme, interactions between medical professionals and family caregivers were necessitated by the needs of the CMC. However, dissimilarly, when these interactions did not meet the needs or standards of care required for the CMC, participants reported outcomes ranging from fear and chaos to death of a child.

For Family Caregivers

More than half (n = 8) of the participants indicated that the trach-care training they received in the hospital did not reflect the reality of their situation, which led to high levels of anxiety, multiple emergency situations at home, and subsequent calls to 911. Carla explained that she had to teach herself through experience:

I would love to type up a document called, “100 Things I Wish Someone Would Have Told Me,” or, “Questions I Asked That People in the Hospital Didn’t Know How to Answer.” The training was definitely lacking. I had to do a lot of it myself. I am lucky, because I am proactive. The nurses were like, “oh wow, okay, she’s coming in with more questions!” I had very good questions about typical day-to-day care that they just assumed I knew how to do. I am not a nurse, I was never in the medical field, so that was very frustrating.

Although several participants commented on the inadequacy of training, others also expressed intense fear and feeling overwhelmed by possible negative outcomes. Beth stated, “I didn’t understand why I was feeling scared, but now I know, it was the way she (the nurse) was explaining it that made me scared.” Justine reflected on a “dramatic” instance where she watched her child’s trach change in the hospital and left feeling ill-prepared should the worst-case scenario happen:

Just seeing the blood and everything, it was just so scary to know that I had to do that myself at home without a team of doctors, where I could press the code blue button and they come and help me ... it was terrifying to come home, and change out his trach for the first time, even with a nurse ... I used to shake during the trach changes. I was so nervous that I would do it wrong or hurt him.

This quote demonstrates ineffectual communication during training; meaning, the training offered does not account for the basic knowledge base of parents. Genevieve captured this sentiment with her statement:

Most American families are not prepared for stressful situations. Being a mother of a trach baby is already terrifying if you’re an emergency professional like me. But it’s more terrifying to think that discharge planners are imagining that everyone’s like me! Calling it (the lack of emergency training) a “parental failure” is wrong. It’s not a case of “non-compliance either.” It’s a lack of understanding, a lack of cultural understanding of where people are at .... By simplifying things too much and leaving out the edge cases they (the hospitals) are doing a disservice to families and their children.

For Home Health Nurses

Participants also shared insights regarding their unmet need for skilled nursing and home health services. In their time of need, several parents had not received adequate support which had severe outcomes. Anne recounted:

My son was getting the wrong medication, because they (home nurses) weren’t following orders, and if they didn’t understand something they didn’t want to be told that they were doing something wrong. Nurses are overworked, and there’s not enough training. I think there’s just so much to know. For example, he has a G-J [gastrostomy-jejunostomy tube] and there are so many nurses and respiratory therapists that don’t even know what that is, and to me it’s like, how could you not know what that is?

In this example, Anne identified several troublesome interactions that contributed to the poor quality of home healthcare. Seemingly, the relationship between the home health nurse and Anne was not built on trust or mutual respect, the nurse did not appreciate being questioned, and Anne felt invalidated. Without effective communication channels, we see that this mesosystem does not function effectively, creating more potential for stress for the caregiver, healthcare service provider, and CMC.

In the event of an emergency, trust is paramount for these caregivers. However, several participants shared instances when poor decision-making during emergency situations further fueled their frustration. Livia shared:

We had an emergency where [child] was still very limp and not awake. The home nurse’s first instinct was to rub his sternum. She didn’t know to grab the blue bag by the oxygen tank and attach it to his trach and start bagging while calling for help. He wasn’t responsive and then she ran and got us. We called 911 and they came. The whole issue with home nursing was that she was not prepared for an emergency, in this case, a mucus plug.

Although parents are frustrated, they also recognize the broader systemic issue. There is currently a nurse shortage in the United States, and the impact is being felt by families with the greatest need for reliable care (Haddad et al., 2023). Justine explained:

Reliable nursing care is a problem. I’ve seen a lot of horror stories where the mom went to the grocery store and they came back, and their kid was picked up in an ambulance because the nurse missed something, or something happened. It’s a lot to trust anybody with your kid. It’s even more difficult to trust somebody with your kid that has special needs.

Lania shared an emergency scenario when her grandchild was “very limp” and unresponsive, suggesting the climactic event resulted from a professional care provider not being adequately trained. She recommended, “Home nurses that are taking care of trach kids need emergency training—they know how to suction, they usually know how to do trach changes, and change ties, but I think some emergency education would be so helpful.”

The interactions within this mesosystem demonstrate the need for more effective communication regarding trach-care training. The absence of appropriate communication is reflected in the caregivers’ mental health as well as the CMC’s physical health. For several caregivers, they did not feel equipped to meet the evolving needs of their child and others shared the direct impact deficient training had on the child. To improve the quality of communication between caregivers and medical professionals, participants suggest that more consideration be given to the level of training needed by parents and developing training protocols that change along with the child in various care settings (e.g., home care).

A Lack of Integrated Care

This theme is characterized by interactions among caregivers, healthcare services, and CMC. It is important to note that the data describes individual participant interactions, yet we recognize that this theme, more so than the previous two, is heavily influenced by broader EST subsystems (e.g., exosystem and macrosystem). The lack of cohesion between medical professionals, durable medical equipment (DME) companies, and insurance companies is creating a labyrinth of obstacles for participants. Between the reduced availability of DME and unyielding insurance companies, many participants voiced their frustration over not being able to access the supplies and equipment their child needed. Anne provided further insight:

I don’t think there are any good DMEs out there, from what I hear. I just found out yesterday talking to my Medicaid case manager that they are submitting payment for things that we’re not receiving … There was a time where we did not receive a new trach from the DME. He had a trach June of 2020 and then he didn’t have a new trach until February 2021, and it’s only supposed to be used five times.

Brooke also shared an experience with her DME company:

Last month, when we called in our [medical product] order, the service person at the DME said she could only send me two trachs. I told her that we normally get four per month, and to “please check our previous orders.” I knew they were going to try to short me this month. It all depends on who you talk to, because sometimes [the DME] will just let it go. I worry about the lack of supplies and I’m tired of the DME arguing about the requirements set by the doctors.

Anne later added that in order to provide her child with the supplies they needed, she “bought them on eBay for $80 a piece because a ‘trach mom’ was selling them illegally.” Several others also disclosed that they had purchased supplies from eBay or an online “black market.” This breakdown in communication is driving caregivers to explore alternative pathways in their mesosystem, where there is potentially more choice but also more risk.

Inaccessibility to quality DME is compounding already difficult circumstances of not being able to connect with consistent and reliable support. Doug shared that his family was “in a legal battle” because they were denied by [health insurance] a vibration vest that would reduce the number of trips to the hospital for his daughter, Sally. Although this would improve Sally’s quality of life, and ultimately result in fewer insurance claims (i.e., not needing to visit the hospital as often), he stated, “the insurance companies only care about their bottom line.” Genevieve shared a similar view pointing out the inequity of power between DME and patients, “Patients are profitable—don’t let anybody tell you otherwise. My son clears $36,000 a year in insurance reimbursements for the DME—fork over a Fisher-Paykel [a high-quality name brand of medical equipment] please.” In this quote, Genevieve is voicing her frustration over how much their insurance company profits off her son’s medical needs, yet when he needs a higher quality medical device, there is pushback.

Discussion

This study explored the lived experiences of caregivers providing primary care to children with tracheostomies. Childhood illness can have negative effects on various aspects of the lives of family members, including their emotional well-being, social relationships, and financial well-being (Bush & Price, 2021; Wightman et al., 2019). As we outlined, systemic issues are pervasive throughout the trajectory of care, beginning at the hospital, following families into their homes, and through persistent interaction with medical professionals, insurance companies, and durable medical equipment providers. Guided by ecological systems theory and existing literature, the following discussion contextualizes poor interpersonal interactions occurring in the mesosystem that contribute to stress felt by caregivers of CMC.

The first theme focused on the participants’ need for peer support. They explained how connecting with someone who shared the same, if not similar experience, would help them navigate the uncertainty they faced regarding their child’s medical care. This is consistent with other literature that suggests connecting with others through shared experience promotes adaptability and resiliency of caregivers (Foster et al., 2022; Graham, 2016; Mullins et al., 2015; Watters, 2017). In the absence of hospital-organized peer support programs, these caregivers sought out other resources such as family and friend support networks (e.g., Lania was helping her daughter and grandchild) and social media groups (e.g., Facebook groups). Other scholars also found social media and online support platforms to be beneficial for exchanging information, sharing supplies, and building emotional connections (Huestis et al., 2020; Meyer-Macaulay, 2021). While these findings further substantiate the benefits of having integrated, inclusive support systems (e.g., family and friends, religious groups, workplace, healthcare settings, and community agencies), it is equally important to evaluate the impact of online or digital environments on individuals’ mesosystems. Participants in the current study also alluded to the risks involved with obtaining supplies and equipment, sometimes second-hand. As society evolves technologically, we should continue working toward solutions that mitigate risks associated with social networking in order to keep families supported and safe.

In addition to not receiving sufficient peer support, the second theme focuses on participants’ experiences of inadequate training in the hospital and after discharge. As CMC move from inpatient to outpatient care or from one healthcare facility to another, having a well-coordinated transition plan is vital for a thriving mesosystem. Participants did not feel they received in-hospital training that accurately reflected their level of expertise or reality of home care. Studies reporting similar findings suggest that caregiver-focused emergency training for parents of CMC before hospital discharge can help improve outcomes for these children by reducing emergency department visits, hospital readmissions, and caregiver burden (Amar-Dolan et al., 2020; Mullins et al., 2015; Nageswaran & Golden, 2017). Participants also expressed emotions of fear, distrust, and overwhelm once their children were discharged from the hospital. This data coincides with existing literature that reports the barriers to quality in-home care (Foster et al., 2019; Mai et al., 2020; Nageswaran & Golden, 2017). Difficulty accessing competent nursing care contributed to heightened levels of uncertainty among participants. While competent in-home nursing for children with tracheostomies is imperative for safety and respite (Mai et al., 2020), participants noted there was a shortage of well-trained home nurses and a lag in coverage by Medicaid and private insurance for these services. EST assists in identifying the even deeper meaning of this stress by providing a lens to interpret the interactions that occur between microsystems and macrosystems, which we will discuss next.

The final theme demonstrated the participants’ need for a cohesive healthcare system. Navigating inpatient and outpatient costs for children with tracheostomies was described by participants as a complex process often involving multiple stakeholders, insurance providers, and healthcare facilities. The inconsistency in communication and lack of cohesiveness across healthcare service providers further complicated the care participants were able to provide to their children. For example, participants shared that when they identified safer or more comfortable supplies, equipment, and technology, they were denied by their DME since Medicaid limited what they could cover. Existing literature also brings to the forefront the variation of healthcare support and resources in relation to the individual child’s needs (Foster et al., 2022). In response to this barrier, some states offer supplemental assistance programs. For example, the California Department of Health Care Services established the California Children Services (CCS) program to work across counties to provide diagnostic and treatment services, medical case management, and physical and occupational therapy services to children under age 21 with CCS-eligible medical conditions (CCS Program, 2023). Developing programs such as CCS across the United States would be an impactful shift toward a coordinated and integrated approach to delivering healthcare services (McLellan et al., 2022). Furthermore, to minimize devastating outcomes such as those shared by the participants, continued effort needs to be placed on facilitating systematic change.

We presented findings in a systematic way to emphasize specific concerns resulting from the lived experience of caregivers. However, the challenges families of CMC face are nuanced and multilayered. These families continue to fall through the cracks, placing them at higher risk of caregiver burden due to resulting complications (e.g., decannulation, misplacement, or obstruction of the tube) (Hartnick et al., 2017). The issues across all three themes further support evidence of significant fractures within our healthcare system, which leads to an important question of whether our society values the lives of medically vulnerable populations. In the case of medically complex children, providing access to necessary medical care comes down to building more effective connections between microsystems and throughout the entire ecological system. The inaccessibility, unaffordability, and inequality are not new findings (e.g., Frantantoni et al., 2022; Kuo et al., 2017; LeGrow et al., 2022), but the pervasiveness of these issues after decades of research and policy reformation is concerning. We, as a society, need to ask ourselves how can we work together to build a system that promotes the betterment of these children and their families (Varkey, 2021).

Limitations and Implications of Future Research

The findings represent the most pressing care issues for parents/family members with CMC. A significant limitation is the sample for this study, which included predominantly female participants with limited racial and ethnic diversity from seven states of the United States. Additionally, this study did not collect data on household income and was not directly discussed by participants; however, they did mention the out-of-pocket costs they incurred, and income disparity among CMC caregivers is worthy of further exploration. Socioeconomic status (SES) can play an important role in relation to health and health-related stressors. Specifically, SES is linked to less access to healthcare, higher and ongoing environmental stress, and greater likelihood of childhood stress (Garrison & Rodgers, 2018). To improve health equity, future research should consider income inequality as well as other social and economic factors that influence the accessibility of social services, transportation, technology support, medical supplies, and respite care. The rules and regulations regarding payment for family caregivers vary from state to state in the United States. Selection bias may also influence findings because activated parents are more likely to have interest in participating in this kind of research.

Conclusion

This study conveys the myriad challenges of caring for a child with a tracheostomy through the transition from inpatient care to care at home. Although this article discusses the challenges within micro- and mesosystems, it is important to underscore the interrelatedness with other subsystems. As we outlined, systemic issues are pervasive throughout the trajectory of care, beginning at the hospital, following families into their homes, and through persistent interaction with medical professionals, insurance companies, and durable medical equipment providers. Childhood illness can have negative effects on various aspects of the lives of family members, including their emotional well-being, social relationships, and financial well-being (Bush & Price, 2021; Wightman et al., 2019).

It is important to ensure that access to care is distributed fairly and based on need rather than on factors such as socioeconomic status or insurance coverage. With the advancement of medical technology, the care of CMC raises important ethical questions about the responsibilities of society toward those who require extensive medical care (Varkey, 2021). While the question of society’s ethical responsibility toward CMC may be complex and nuanced, considerations such as the principles of beneficence, justice, and respect for human dignity suggest that there is an ethical obligation to provide necessary care and support (Varkey, 2021). To improve the quality of care over time, the healthcare system must work together to close the gaps that are influencing issues of quality, accessibility, and affordability.

Ethical Statement

Ethical Approval

Our study was approved by the Children’s National Hospital Office for the Protection of Human Subjects (STUDY00000094).

Informed Consent

The IRB protocol required that all participants provided written informed consent prior to enrollment in the study.

ORCID iDs

Jules Sherman https://orcid.org/0000-0002-1346-9137

Kyle L. Bower https://orcid.org/0000-0001-6043-356X