“It's Relentless”: Providers' Experience of Pediatric Chronic Critical Illness

Abstract

Background:

Children with chronic critical illness (CCI), those children with repeated and prolonged hospitalizations along with technology-dependence or multiple organ system involvement, are increasing in number. The intensive daily needs of these children, during hospitalization and at home, affect both clinicians and families.

Objective:

To assess clinician experiences of burnout and clinician perceptions of family burnout in caring for children with CCI.

Design:

Semistructured interviews with 44 stakeholders known for pediatric CCI expertise were audio-recorded and transcribed. Participants characterized their experiences with provider and family burnout.

Setting/Subjects:

Stakeholders were from five metropolitan areas, representing a variety of professions (i.e., inpatient/outpatient clinicians, home health providers, and policy professionals).

Measurements:

Content analysis was performed on interview transcripts.

Results:

Participants reported that both clinicians and families caring for children with CCI experience some level of burnout, although stakeholders note that families may experience burnout differently than clinicians. Burnout results from the following: (1) escalating daily care needs; (2) intense relationships between clinicians and families; (3) uncertain outcomes; (4) feeling unprepared to care for children with complicated medical needs; and (5) the stress and emotional toll of caring for a child with CCI.

Conclusions:

Managing the medical needs of children with CCI can be associated with clinician and parent burnout. Strategies to support clinicians and families are needed to ensure high quality of care for these children, as well as maintain an appropriate number of clinical providers for this vulnerable subset of children with medical complexity.

Introduction

The number of children with medical complexity is increasing, utilize disproportionate healthcare resources.^1,2 Children with chronic critical illness (CCI), a subset of children with medical complexity, generally have multiple organ involvement, reliance on medical technology, and prolonged hospitalizations, including intensive care.^3,4 Estimates suggest that children with CCI account for 0.4% of all United States children or ∼3% of children with medical complexity,⁵ but utilize as much as 50%–60% of hospital resources for children.^2,6 The intensive daily needs of these children, during hospitalization and at home, affect both clinicians and families, both emotionally and physically.

For clinicians, the medical complexity of children with CCI is challenging. Facilitating multidisciplinary decision making for these children is particularly demanding, and is often hampered by the lack of a long-term relationship with the child and family, and the known difficulties with communication between inpatient and outpatient providers.^7–9 Healthcare systems are poorly adapted to meet the needs of CCI children and clinicians often have to dedicate personal resources (i.e., time) to care for them. Lack of consistent communication and clear goals of care frustrates both clinicians and parents who may suffer significant psychological distress observing a child's pain and suffering,^10,11 deteriorating health,¹² and death.

For families, home care for CCI children is characterized by “medicalization” of the home environment. The need for medical technology to sustain vital functions, multiple medications, and for some, home healthcare nursing, necessitates building the families' daily schedule around the child's medical needs. Frequent physician visits, unexpected emergency room use,^5,13 and hours spent on care coordination impinge on parents work productivity and time with other children, and decreases quality of life.⁵ Child care providers, both in the community and within the family, are often unwilling to take on the added responsibility of a child with special needs, leaving parents to shoulder the burden alone; an inpatient hospitalization frequently comes as a relief for parents in need of respite.¹³ Family finances are adversely impacted.^5,13

The burden clinicians and parents experience caring for children with CCI can lead to symptoms of burnout, a psychological condition characterized by emotional exhaustion, depersonalization of patients, and a reduced sense of personal accomplishment.¹⁴ Although the concept of burnout was derived for clinicians, parents provide CCI children with substantial medical care; so the concept may be relevant for these families, even if not experienced in exactly the same way as clinicians. Parent burnout, defined as chronic stress and exhaustion, may be the result of the emotional and physical demands of parenting a CCI child, and the need for ongoing advocacy on the child's behalf within complex healthcare and community support systems.^15,16 The daily burden of care can adversely affect parents' health-related quality of life.^17,18 Because children with CCI can survive into early adulthood, it is essential that clinicians, family, and caretakers of these children derive adequate support and relief, so that they can continue to provide quality care. As part of a larger study, we asked medical professionals with extensive experience with children with CCI about burnout among clinicians and parents caring for these children.

Methods

Medical professionals (participants) completed audio-taped, semistructured interviews between December 2015 and March 2016. For this study, “pediatric CCI” was defined as “children with complex and chronic medical conditions who require repeated and prolonged intensive care unit hospitalizations.” Participants were recruited using purposive and snowball sampling. This sampling frame is useful when the population being studied is a diverse group, as is true with CCI children.¹⁹ Beginning with clinicians known by the authors for their expertise with CCI children, and continuing until professionals with diverse roles related to CCI care were included, participants were recruited from five metropolitan areas: Seattle, WA, Houston, TX, Jackson, MS, Baltimore, MD, and Philadelphia, PA. Participants included physicians, nurses, social workers, and healthcare administrators caring for CCI children in the neonatal or pediatric intensive care units, other inpatient sites, rehabilitation facilities, outpatient pediatric practices, and home. The Institutional Review Board granted study approval; oral consent was obtained.

Participants were asked two questions: (1) What is your experience with clinician burnout in caring for children with CCI; and (2) What is your experience with family burnout in caring for children with CCI?

Interviews were transcribed and content analysis performed, systematically coding participant responses into common themes.²⁰ Individual investigators first reviewed responses to each question and assigned codes, and then investigators jointly reviewed individual codes and grouped them into families. Similar code families were combined into themes. One investigator (R.D.B.) reviewed all transcripts with the master codebook looking for coding discrepancies; all discrepancies were resolved through discussion. Themes are illustrated through stakeholder quotations, edited for clarity and anonymity. Participants are identified by their professional roles.

Results

Forty-four eligible professionals participated in the study (Table 1). Many participants had multiple CCI roles, such as a physician performing both inpatient and outpatient care, or a nurse performing patient home care and administration of a home healthcare company.

Table 1.

Demographic Characteristics of Clinicians

	Primary role
Metropolitan area	Physician	Nurse/nurse practitioner	Social worker	Other
Baltimore, MD	5	6	1	1
Jackson, MS	5	2	3	1
Philadelphia, PA	5	4	0	0
Huston, TX	3	3	0	0
Seattle, WA	5	0	0	0

Is CCI care associated with caretaker burnout?

Most participants reported that both clinicians and families experience a form of burnout related to the care of children with CCI. Clinicians described personal experience with this in themselves and colleagues. Some felt that clinician burnout is not more likely for this population than for any other patient group. Several noted that working with CCI patients can reduce clinician burnout because helping these very vulnerable children and families can be meaningful.

Participants noted that the concept of “burnout,” typically described for clinicians, is not a perfect fit for parents, yet most felt parents of these children do have substantial stress and distress related to their child's daily care needs and illness severity.

I'm aware of it in myself. I'm aware of it in colleagues. I'm aware of it in everyone involved in taking care of them. State 5, Physician

Many people are incredibly resilient and strong,… the reason why I'm still a clinician is because not a day goes by that [my]patients don't inspire me with their personal strength. State 1, Physician

But family burnout, I think, is real. The families sometimes just get so frustrated that this is their life… [burnout] is not going to map because it's about how you treat clients and it's about the depersonalization of people coming to you. These families don't depersonalize their child… I don't think it's so much that they burnout, it's that they wind up with what would have been called context-driven depression-anxiety because they're overwhelmed with the tasks State 3, Physician.

Relentless and escalating care needs

The most common aspect of pediatric CCI care that participants associated with burnout was the relentless and escalating daily care needs of these infants and children. Clinicians struggled with multisystem complications that require constant medical attention, yet rarely are “fixed.” The illness complexity demands substantial clinician effort, yet the child's response to therapy can be difficult to detect or quantify. Participants described that children with CCI become progressively sicker over time, increasing clinician anxiety about high-risk medical management. Participants noted that families' lives are often organized around the constant care and monitoring needed by these children and that, among parents, mothers typically provide much of a child's daily care and were more likely to experience a form of burnout.

But burnout can be quite significant, especially if you invest a lot in them, and you don't see them going anywhere, and you can't deal with the fact that you aren't able to help them get better. State 1, Physician

And these are fragile patients. You have to worry, “Well, I'm going to try this, but what if? What if I miss something? What if that's not the right answer? What if I shouldn't have tried to keep them at home? What if I should have brought them in [to the hospital]?” State 2, Physician

And just over time, as the requirements for care increase, …by the time that kid has been ill for a couple of years, the parents are just so used to setting up the feeds, and okay, now we have trach care, and now we're on a ventilator, and they have to be monitored all the time, but we lost our nurse so I'll just stay up for 18 hours a day, and then I'll drive the other kids to school. I think, in my experience, moms tend to take on more and more and more, and there tends to really be no relief for them. State 5, Physician

Intense relationships

Participants noted that pediatric CCI care challenges relationships within and outside of the hospital. Clinicians note that their frequent interaction with children and families, and the recurrent need for serious discussions and decisions, intensifies the clinician–parent relationship. For some, this intensity is personally rewarding. For clinicians caring for multiple CCI children, these demands can become overwhelming. Clinicians remarked that these families can become angry and mistrustful of clinicians as their child's condition deteriorates.

Families voice to clinicians that they prefer to restrict their child's care team to a select number of clinicians. They also regret needing to rely heavily on others to meet their child's needs. They describe how relationships with extended family or friends can strain when people tire of the child and family's constant struggles. When these supports diminish, families struggle to forge new relationships with potential helpers.

It was extremely emotionally draining dealing with those three families, even though I had several other babies on my service, [the]majority of my time was spent talking to those families every day. I can see where people could get burnt out dealing with that on a daily basis. State 2, Physician

But there are a lot of very intense situations, a lot of very intense decisions…In all honesty there are some of the families who because of the stress and the anguish, they lash out and it's completely understandable, but at the same time… State 2, Physician

And then just the chronicity of it. Sometimes unremittent, so year after year after year they're providing medical care. For some families it's difficult to allow others to help or to care for their child instead of them, and that contributes to burnout. It's pretty high and very significant. State 4, Physician

Uncertainty

The stress of caring for pediatric CCI patients is also increased by the uncertainty related to their care, specifically the uncertainty about whether the child's illness is becoming life threatening and whether medical interventions are prolonging suffering for the child without benefit. Clinicians reported finding it very difficult to be responsible for treatments/procedures that cause these children more pain and discomfort. Clinician perceptions that a child is suffering often lead to difficulty understanding why parents elect to pursue burdensome therapies.

Families struggle with their child's decline, and the difficulty knowing which exacerbation will be “the last.” Participants perceive that this results in intense and exhausting vigilance for parents.

I think clinicians get burned out because they feel like some parents pursue interventions that the clinicians wouldn't recommend because the clinicians feel like the child has a poor quality of life. I think that's a subjective assessment, but I think it feels very real for the clinicians who suffer moral distress over it. State 5, Physician

I think it's definitely an issue, especially I would say for families. I can't imagine running a hospital at home all the time, basically, and fighting all these battles to get the child what they need. Never knowing really what tomorrow holds. Never knowing… how long you have with your child. State 2, Physician

I wasn't prepared to do this

Participants noted that few clinicians have training specific to the pediatric CCI population, which leaves them feeling stretched to deliver this care. They also describe multiple voids and inefficiencies in the medical system that substantially increase the time and effort that must be devoted to care for these patients. Often this time and effort come from clinicians' personal resources.

Families also report to participants feeling unprepared to meet their child's complex needs. For many, it took a long time to accept that their child's needs were chronic and were not likely to go away, and that resources are not always available within the systems of care.

These children are often like canaries in the coal mine in the sense that they quickly make evident lots of cracks in system of healthcare, and they either fall through those cracks or they're exposed to something through one of those cracks that is hard to watch and can be frustrating. Therefore, if you are not prepared as a clinician to figure out how to handle the frustrations of witnessing some of this going on, then it's just going to be a frustrating job that can lead to symptoms of burnout. State 3, Physician

I think when it's a stressful situation or when families are stressed and when the clinicians have limited resources that it can create burnout because you feel like regardless of how hard you try, there's no way that you can meet the needs of that family. State 4, Nurse/Nurse Practitioner

Impact on caregiver

Participants described how pediatric CCI care can undermine the personal rewards that often motivate clinicians, the hope to cure or significantly improve patients. Clinicians often have very long relationships with these patients and families, and the personal/professional boundary can blur. Clinicians described the impact on their own health and well-being that can arise from the substantial effort required by CCI patients. They acknowledged guilt about their own stress, knowing that family care demands are much greater.

Participants recognized an emotional toll that families experience related to their child's illness. Families also describe a physical toll that comes from the significant daily care. While the bulk of this falls on the parents, especially the mother, it affects the well-being of the entire family.

… Certainly, everybody gets very involved with children that they take care of for a long time. The emotional commitment is quite high. You tend to either withdraw from them, to some extent, become much more dispassionate, or you get overly involved with them and throw a lot of your own resources emotionally and time-wise into them. State 1, Physician

It's a high stress job for a provider because the kids die. The kids get really sick, and so there's a lot of guilt and self-blame if a kid gets sicker or passes away. That's heavy to live with. State 4, Physician

[Parents are] really stressed and feeling torn in lots of directions: trying to keep the home fires burning, spend time at the hospital, take care of their other kids. Some of my clients' parents develop their own health issues as a result, so it's very, very challenging.

State 1, Lawyer

Impact on child's care

The burnout experienced by clinicians and related symptoms in parents were noted to affect the child in multiple ways. Clinicians who experience burnout commonly leave their role as a provider of pediatric CCI care, further whittling the available services and leaving families to transition to new clinicians. Clinicians who continue in their role may avoid CCI patients, increasing the demands on their colleagues. Family burnout and exhaustion can result in lapses in their child's home care. Families develop a tenuous home life balance, and stressors posed by siblings or jobs can also undermine the time available for the CCI child's care.

I can see the burnout already in our staff. We have already rotated some providers and I have watched families have to change. State 2, Physician

Private duty nurses will take themselves off a case or they'll remove themselves for a weekend and the families get left with nothing, if they decide they need a break. State 4, Nurse/Nurse Practitioner

For clinicians, the burnout obviously may result in…not necessarily wanting to take up clinical duties, maybe moving more rapidly through patient care, instead of thoroughly. Children may tend to have more acute illnesses, as a result of either the stress that [parents are] feeling as well, or the potential lapses in care due to the caregivers inability to meet all those needs. State 1, Physician

Mitigating burnout

Reducing clinician burnout was felt to be a priority, but participants spoke of clinicians struggling to engage in activities known to be helpful. Case debriefings, enforced time off, creative scheduling by team leaders, and support from colleagues were cited as beneficial activities. Clinicians infrequently practiced self-care, an acknowledged antidote to burnout.

Some participants cited developing strong connections with children and families as protective factors. Others recounted learning important life lessons from CCI children and families, which were highly valued and provided additional meaning to their challenging work.

…Instead of running the board and getting rounds started at a timely fashion, we need an extra 20 or 30 minutes to do mindfulness preparation, which we do two mornings a week, or we have to have our staff reflection moved up more than it's scheduled to really talk about a difficult case or we just need to debrief on something, I will absolutely make that a priority. I am really concerned. I think [burnout] is a tremendous risk and I think it's the nature of the job. State 5, Physician

We talk about it. Try to take breaks. We acknowledge it in each other… at both our NICU center and at our pediatric Children's Hospital, those are important venues to remind yourself of the humanity of why we went into this to begin with. State 5, Physician

We certainly haven't taken any steps to measure [burnout] but just anecdotally, it seems very high. It is certainly among our colleagues. I don't think we do enough self-care. State 2, Physician

Discussion

Children with CCI have unremitting needs that challenge the current system of healthcare, both in the hospital and at home. Participants in this study report that burnout is high among clinicians and parents caring for CCI children, which can potentially contribute to poor quality of care for the most vulnerable of children. Indicators of burnout are obvious in the quotations of the participants. For some clinicians, although, the strength and composure demonstrated by these children and families sustain and inspire them.

Burnout occurs in 40%–50% of pediatric physicians, with an increase in the percentage of physician affected from 2011 to 2014.^21–23 It is a significant contributor to reduced job performance and job turnover among both physicians and nurses.^22,24–26 Symptoms of burnout are related to medical errors with a direct relationship between reported increasing levels of depersonalization and increasing risk of error.^27,28 Clinicians suffering from burnout leave their current job at high rate. A study of physicians in one large healthcare system showed that the higher the score for emotional exhaustion on a burnout scale, the greater the likelihood of reducing working hours in the next 12 and 24 months.²² Burnout also adversely affects physician–patient communication, resulting in an increased negative discourse during clinical encounters.²⁹ Among an already small pool of physicians, burnout can reduce the number of clinicians available and willing to care for the CCI,³⁰ a group of children and families where continuity of care is vitally important. Not surprisingly, reducing clinician burnout has become a priority for healthcare systems to help stabilize the work force, improve patient safety and quality of care, and increase family satisfaction with medical care.

Participants in this study perceived that parents of children with CCI have significant stress related to the constant and often escalating demands of childcare. This result is supported by systematic reviews of the daily experience of living with a child with special healthcare needs. Parents report feeling neither prepared for the needs of their child at home nor bolstered by the medical community in attempting to meet those needs.^31–33 Parents report difficulty accessing community services, including primary care, and obtaining prescription drugs.⁵ Poor clinician–parent communication and inadequate coordination of healthcare are frequently reported barriers to family-centered care. Parents also value, but often find missing from medical care, clinician continuity³⁴; these shortcomings are a significant source of parental distress. Furthermore, “worry as a bona fide part of everyday life,” beyond the worry of normal parenting,³¹ contribute to the depression and anxiety often experienced by parents of children with medical complexity. Given these daily stressors, it is easy to understand how parents could demonstrate symptoms of burnout.

Meta-analyses have shown that interventions to alleviate clinician burnout can be successful. Panagioti et al.³⁵ reported that system-level interventions are more successful than physician-level interventions. Changes in work schedule, workflow, workload, and training to improve communication resulted in small, but significant decreases in burnout. Participants in this study commented on altering rounds to debrief after a stressful case and adjusting clinician schedules for enforced “time off.” Few targeted training opportunities exist for clinicians concerning care of CCI children and skill building in parent-clinician communication, a critical component of CCI care, constitutes little of the educational curricula for clinician trainees.⁸ Medical education in both of these areas, as well as employee assistance programs, psychological counseling, and support from colleagues may reduce clinician burnout.

Individual interventions, such as mindfulness training, have also been successful in alleviating burnout,^36,37 particularly when endorsed by the healthcare system.³⁵ Lack of physician self-care, as cited by participants in this study and highlighted in a review by Wallace et al.³⁸ could be used as a precursor to burnout, signaling the need for intervention. Physician attention to their own physical and mental health has been proposed as part of a quality-of-care matrix.³⁸

Increased availability of respite care and primary care through a medical home may help mitigate burnout for parents of CCI children. Studies have shown that both in and out of home, respite care improves parents mental health.³⁹ A study by Mullins et al.⁴⁰ demonstrated that a 3–5 day inpatient stay for children with disabilities reduced parental distress as much as an intense 30-day treatment hospitalization for similar children; effects lasted for 6 months. As many as 24% of families in need of respite care have their need unmet⁴¹; 40% of families with children with unstable conditions, an apt descriptor of many CCI children, have an unmet need for respite. There are other barriers to respite care, in addition to lack of availability. Parents have difficulty navigating systems to qualify for and obtain respite care,^42,43 and in trusting caretakers for their child, whom they do not know well.^43,44 Coordination of care through a medical home provides children with continuity of care, and increases parents' knowledge of community resources, helps in troubleshooting access to services, and improves compliance with treatment.⁴⁵ The American Academy of Pediatrics Council on Children with Disabilities suggests that the medical home can be provided by primary care or subspecialty pediatricians.⁴⁶ For CCI children, a specialist who knows the child and family well and is familiar with community resources for the child's condition, may make the most sense.

Involvement of palliative care teams during the evolution of disease for CCI children could establish a consistent resource and means of support for clinicians and parents, during hospitalization and when children are at home.

Results of this study need to be considered within the context of its limitations. The sampling frame was nonrandom and participants were not evenly distributed across regions, which may introduce bias. A nationally representative sample of professionals caring for CCI children would be ideal to corroborate these findings. Since no state or national organizations exist for CCI clinicians from which to draw a sample, such a study will be difficult to conduct. The relationship between clinician and parent burnout may be bidirectional, each contributing to the other's experience of burnout. Experiencing frequent, intense interactions with families may also predispose the clinician to report burnout in parents, or may contribute to their own burnout. We did not ask parents of CCI children directly about their experience with burnout. Their perception of the burdens of CCI childcare may be different from that of clinicians' understanding of parent burnout. The next step may be a larger nationwide prospective study following CCI children, families, and clinicians, longitudinally. This approach could include clinicians with less experience with CCI and be more representative of the lived experiences of professionals and parents caring for CCI children. Finally, the investigators of this study, all of whom work in intensive care, may have subconsciously projected their own views of and experience with burnout when interpreting the data, although no investigator self-identifies as experiencing burnout. This is a serious consideration for all clinician-researchers studying this topic.

Conclusion

Children with CCI have substantial and unrelenting care needs that are associated with symptoms of burnout in professionals and parents. Burnout can have a detrimental effect on quality of care in the hospital and community, and at home. Mitigating burnout takes intentionally altering the burden of childcare and purposely engaging in self-care for both professionals and parents. Intermittent changes in work schedule and workflow may be helpful for clinicians. Respite care and utilization of a medical home may ease parents' burden.

Footnotes

Acknowledgments

The authors would like to thank the members of the CCI Working Group for their contributions to this work.

Author Disclosure Statement

No competing financial interests exist.

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