Navigating Stress in the Pediatric Intensive Care Unit Among Parents of Children with Severe Neurological Impairment

Abstract

Introduction

Children with severe neurological impairment (SNI) make up nearly 50% of pediatric intensive care unit (PICU) admissions, yet little is known about how their parents and family caregivers navigate stress during these difficult times.

Methods

This qualitative single-center study used content and thematic networks analysis to evaluate data from 1:1 semi-structured interviews conducted around the time of PICU discharge with parents and family caregivers of children with SNI to examine ways they navigate stress. Proportions of participants reporting each theme and subtheme were calculated.

Results

Fifteen parents/family caregivers of 15 children with SNI participated. Children were a median of 8 years old (range 1-21 years) and the majority had congenital/chromosomal conditions leading to their neurologic condition (80%, n=12). 20% of participants were fathers (n=3) and 45% (n=7) reported identifying as having a minority racial background. Themes included 1) self-activation, and 2) letting go and the majority (80%, n=12) of parents reported using both self-activation and letting go strategies. Within each of these themes, 5 subthemes illustrated ways parents navigate stress. The most reported subthemes were advocating and showing up (53%, n=8) and being supported by compassionate clinicians (67%, n=10). Themes/subthemes were used to create recommended language to guide clinicians in supporting parents.

Conclusion

Parents and family caregivers of children with SNI employ various ways to navigate stress in the PICU. Themes from this study can be used to develop interventions that meet the psychosocial needs of parents and family caregivers of children with SNI during highly stressful times.

Introduction

Children with severe neurological impairment (SNI) have static or progressive central nervous system conditions that result in motor and cognitive disability and medical complexity.¹ Many children with SNI have congenital conditions or brain injuries resulting in the need for parent and family caregiver support as well as medical technology to assist with everyday activities.² Although <1% of children have SNI in the United States, children with SNI make up about 25% of admissions at children’s hospitals and approximately half of pediatric intensive care unit (PICU) admissions nationally.^3,4

During times of their child’s critical illness, parents and family caregivers must navigate many stressors.^5,6 These stressors are heightened among parents/family caregivers of children with SNI who must provide comfort, advocacy, and decision-making for their child - often as their child’s voice.⁷ How these caregivers navigate stress has implications for their child’s health outcomes. Yet, little is known about the impact of these stressful experiences on parents/family caregivers, nor the strategies they use to navigate challenges related to their child's PICU care. Although this likely involves harnessing resources to manage the demands caused by these stressful experiences,^8,9 developing a better understanding of parent and family caregiver coping may inform how clinicians can support parents of children with SNI to promote the wellbeing of both the child and family.

This study aimed to examine how parents and family caregivers of children with SNI navigate stressful experiences for themselves and their child in the PICU.

Methods

This inductive qualitative study was part of a larger study examining the experiences of parents and family caregivers of children with SNI throughout their child’s PICU admission. We followed consolidated criteria for reporting qualitative research (COREQ) guidelines for conducting rigorous qualitative research.¹⁰ The study was IRB approved through the children’s hospital.

This study was conducted at a single quaternary academic center with a 32-bed PICU serving the northwest region of the United States. Eligible parents/family caregivers were English-speaking and the legal guardians of a child with SNI ages 3 months to 25 years-old. The child needed to have their SNI condition for at least 3 months (so that caregivers had baseline experience), to be in the PICU for >24 hours with an expected length of PICU stay >1 week, and a prognosis of survival of >4 weeks (as estimated by the PICU team to limit burden on families if their child was expected to be at end-of-life). Eligible participants were identified using the daily PICU census lists in the electronic health record. The child’s clinical and SNI status (per the Allen et al.¹ definition and operationalized through caregiver dependency for activities of daily living and communication) were confirmed with the PICU team prior to approaching parents/family caregivers. Eligible participants were consented in-person.

One-on-one semi-structured interviews were performed around the time of PICU discharge either in-person or once the family was home (based on parental preference) with a member of the research team (JB, EO) who was not directly providing care for the child/family at the time of the study. The interview guide was developed by a group including pediatric palliative care (JB, AR), complex care (JB), communication (JB, AR), trauma (EO) and resilience (JYF, AR), intensive care (SW), and qualitative (KB) researchers. The drafted guide was piloted among 2 parent advisors for understandability and usability. Open-ended questions in the guide queried 1) stressors and 2) aspects of navigating PICU experiences as a parent/family caregiver. Interviews were audio-recorded, professionally transcribed, and de-identified prior to being uploaded for analysis into Dedoose, a cloud-based qualitative analytics software.¹¹

Two study team members (JB, EO) reviewed all the transcripts making note of common content to iteratively create the codebook. Once the codebook was finalized, transcripts were coded by a primary coder and subsequently reviewed by a secondary coder using the memo function in Dedoose to resolve disagreement. Coding discrepancies were adjudicated through group meetings with qualitative expert oversight until code saturation was reached (whereby no additional code categories were identified and the codebook stabilized).¹² Data were then broken down into themes and iteratively analyzed using thematic networks analysis by the analysis team (JB, JY, EO, KB).¹³ Once the themes were finalized, proportions of participants reporting each of the themes and subthemes were compared to determine those most commonly described within the dataset. The analysis team then used these key themes to propose phrases for clinicians to engage and support parents based on experience and prior evidence.^14-16

Results

A total of 15 parents and family caregivers of 15 different children with SNI completed interviews (Table 1). Twenty percent were fathers (n=3) and 45% (n=7) self-identified as having a minority racial background [13% (n=2) as Asian; 13% (n=2) as Black or African American; 13% (n=2) as American Indian or Alaska Native; and 6% (n=1) as Native Hawaiian or Pacific Islander]. Children were a median of 8 years-old (range 1-21 years), had a median PICU length of stay of 10 days (IQR 5.25, 14.5; range 4-52 days), and the majority had congenital/chromosomal conditions leading to SNI (80%, n=12). Prior to admission, all the children used medical technology at baseline and were seen by 6 or more subspecialists in the last 12 months.

Table 1:

Demographic information

Characteristic	Results
Child	n=15
Age, median in years	8 (IQR 4,11.5; Range 1-21)
Gender, n (%)
Female	8 (53)
Male	7 (47)
Race1, n (%)
White	9 (56)
Black or African American	4 (25)
Asian	2 (13)
American Indian or Alaska Native	1 (6)
Ethnicity, n (%)
Non-Hispanic	11 (73)
Hispanic	4 (27)
Primary SNI diagnosis, n (%)
Congenital/Chromosomal	12 (80)
Static Central Nervous System Conditions	3 (20)
Assistance by technology at home1, n (%)
Feeding tube	15 (100)
Non-invasive Positive Pressure Ventilation	3 (20)
Tracheostomy with/without Ventilator	3 (20)
Ventriculoperitoneal Shunt/Baclofen Pump/Vagal Nerve Stimulator	2 (13)
Number of home medications, n (%)
3-5	1 (7)
6-10	5 (33)
11-15	4 (27)
>15	5 (33)
Number of subspecialists seen in the last 12 months, n (%)
6-10	6 (40)
11-15	6 (40)
>15	3 (20)
Number of PICU admissions in the last 12 months including recent admission, n (%)
1-2	11 (73)
3-5	4 (27)
Followed by palliative care team during PICU admission, n (%)	11 (73)
Code status of full code, n (%)	15 (100)
Parent and Family Caregivers	n=15
Age, median in years	39 (IQR 36,42.5; Range 28-55)
Relationship to child, n (%)
Mothers	12 (80)
Fathers	3 (20)
Race1, n (%)
White	9 (56)
Asian	2 (13)
Black or African American	2 (13)
American Indian or Alaska Native	2 (13)
Native Hawaiian or Pacific Islander	1 (6)
Ethnicity, n (%)
Non-Hispanic	12 (80)
Hispanic	3 (20)
Educational background, n (%)
High school degree or equivalent	3 (20)
Some college without degree	3 (20)
Associate degree	2 (13)
Bachelor’s degree	7 (47)
Annual household income, n (%)
<$50,000	2 (13)
$50-100,000	7 (47)
>$100,000	3 (20)
No response	3 (20)
Number of other people in the home, median	4 (IQR 3,5; Range 0-8)

¹Multiple selections possible

IQR: interquartile range; SNI: severe neurological impairment

Participants reported a range of ways they navigated stress in the PICU which were synthesized into 2 themes: self-activation and letting go. An examination of the proportion of parents reporting each of the themes revealed that 80% described both themes (n=12). Within each theme, 5 subthemes emerged. These themes and subthemes are described below in detail and are italicized for clarity. The proportion of parents whose data were used to develop each subtheme is shown in Table 2 along with representative quotes.

Table 2:

Coping themes, subthemes and representative quotes

Proportion of Parents Reporting Each Theme/Subthemes	Themes, Subthemes, and Representative Quotes
13 (87%)	Self-activation: Activating one’s strengths or resources
8 (53%)	Advocating and showing up I think the parents know their child best. Even though sometimes we’re not always right, our instincts are what gets us there. (Parent 15) The older she gets and the more we know about her stuff, we know what has worked in the past and may continue to work in the future, the team often defers to me as the expert on [my child], and even with the knowledge that I probably know more about her condition, based off of just one life experience. (Parent 4)
5 (33%)	Finding moments for self-care Exercise is so helpful mentally. Even if there was a field next to [the hospital], we could just go be outside. I’ll go out and sit on the steps, and it just doesn’t feel like enough of a break. (Parent 13) Just getting up, doing something for yourself every once in a while. (Parent 19)
2 (13%)	Seeking understanding and education I remember when she was first admitted in the hospital, it was really hard for me just to digest everything . . . I learned about her condition, and I was pregnant at the time, and it was just a hard time for me . . . but now I just feel like I know what I’m doing here, just because she’s been admitted more than once. (Parent 16)
2 (13%)	Accessing support from family and friends It’s a mix of both aunties and grandpas [that’s] what strengthened us, ‘cause that’s really how we get through things is leaning on each other and being there for each other . . . family and everybody checking in, making sure that we were okay, and each side of the family brought different things to us that helped us get through. (Parent 15) Definitely my husband, and then my daughter . . . Obviously the whole family, but those two really were the rocks that got me through it . . . when it was trying to make a big decision . . . they were always there, and my daughter was like a little mini me. I talked to her about everything about [my child’s] care. (Parent 15)
1 (7%)	Harnessing positivity That question like ‘Where do you see your child [in a few] months?’ You don’t know, but for us, it was when we were on ECMO, we knew we were going to get off of ECMO and be better. That was our energy, and anybody who walked into our room and didn’t share our energy was not welcome. (Parent 8)
14 (93%)	Letting go: Putting trust in others or circumstances and allowing for distance
10 (67%)	Being supported by compassionate clinicians She got into code blue . . . and for a moment we thought that she was going to die, but the way the doctors treated us, the way they provided confidence and respect to us, the way they treated us, we felt that we had nothing to worry about. The way they spoke to us, we were just kind of calm and we knew that they were going to get [our child] moved forward. (Parent 2) [Our surgeon] brought those really difficult things up right after she had completed surgery on him, and that really spoke to me and made me feel as though, ‘You know what? Somebody’s really looking out for 1) us and our feelings, and 2) at what point is enough, enough for [our child]?’ That, I think, was very profound for me. (Parent 23)
5 (33%)	Letting clinicians lead I mean even though this time around has been harder . . . I feel comfortable with the doctors. I know the doctors are doing everything they can for her. (Parent 16) Having a doctor that you could tell cared and that was super-funny and super-nice. [My child] is a super-happy, upbeat kid, so when other people come around him and they’re upbeat and happy, it puts me at ease, because [my child] doesn’t feel as worried or stressed out. (Parent 10)
4 (27%)	Giving into distraction There was so much going on that I used my work as a distraction. (Parent 23) Decompressing . . . me and my wife have been going back and forth. We go [home] and we take care of the other kids, and then we come back down to the hospital. I think that helps a lot. (Parent 19)
3 (20%)	Disconnecting from emotions I don’t know how you make it through. I feel like when you’re in the PICU, you just do. You’re in survival mode, everybody is. (Parent 10)
1 (7%)	Leaving it to faith and spirituality [Friends and prayer] enabled us to ‘Okay, let’s walk through this slowly like nothing bad has happened.’ Taking that perspective and then trying to go forward in that mindset: ‘It’s gonna happen when it’s gonna happen,’ and try to be at peace with that. (Parent 20)

Theme 1: Self-activation

The theme of self-activation encompassed activating one’s strengths or resources to navigate stress. These were the strategies that required self-starting, motivated efforts on behalf of the parent. Eighty-seven percent (n=13) of participants described self-activation strategies in their interviews. Within this theme, five subthemes emerged. The first was advocating and showing up, which involved being at the bedside as their child’s voice and ensuring their child received the care they needed. Over half of participants (53%, n=8) described efforts to manage stress that were included in this subtheme. One parent shared:

I didn’t miss one round . . . because I wanted to be there front and center and be able to give my narrative based on what I was seeing or feeling.

(Parent 23)

Parents appreciated collaboration with the PICU team and emphasized that years of caregiving gave them specific expertise about their child, which was needed to inform everyday medical decision-making around critical illness.

The second subtheme was finding moments for self-care, which was described by a third of participants (33%, n=5) and encompassed parents’ descriptions of their need to exercise and sleep, spend time outside of the hospital, and/or do something for themselves. One parent shared:

Just trying to take care of yourself and give yourself grace . . . To realize that you’re a part of the equation to getting your kid better . . . because at a certain point, if you’re just so exhausted and not fed, hydrated and supported by others, then you’re gonna fall apart.

(Parent 1)

The third subtheme described by 13% of participants (n=2) was seeking understanding and education and included the ways parents described learning more about their child’s illness to manage stress. One parent shared:

My coping mechanism for the stress is asking as many questions as I can think of . . . if I’m unsure about something, I keep asking until I get it answered.

(Parent 21)

Participants also described seeing both their knowledge about their child’s condition and their familiarity with the PICU system as being extremely helpful in dealing with stress.

The fourth subtheme described by 13% of participants (n=2) was accessing support from family and friends and described the support parents received from family members and friends. Parents talked about not only the importance of their child’s other parent, grandparents, aunts, and uncles, but also the importance of their child’s siblings. They explained that siblings, even if they were young, understood their family well enough to help make important decisions, to provide comfort and reprieve from the PICU, and to ground/anchor parents.

The fifth subtheme was harnessing positivity, which was described by 7% (n=1) of participants. This involved maintaining a positive mindset, even when there was bad news or fears about their child’s worsening health or even death. One parent stated:

Once we got the [understanding] of what’s going on [with ECMO], we just knew what to do to move forward through this process and to keep ourselves focused and positive.

(Parent 8)

Theme 2: Letting go

The theme of letting go encompassed putting trust in others or circumstances and allowing for distance to reduce the stressfulness of their child’s PICU illness. These strategies focused on relinquishing control and/or distancing to see a different perspective. Ninety-three percent (n=14) of participants described letting go strategies in their interviews. Within this theme, five subthemes emerged. The first was being supported by compassionate clinicians, which was described by 67% (n=10) of participants. This subtheme centered on being able to be cared for from an emotionally supportive standpoint by clinicians. Parents discussed the importance of having clinicians who were kind and who embraced humor. One parent stated:

I really felt supported by [this one clinician] and he was always very kind and upbeat, and [my child] liked him . . . He just made it easier.

(Parent 10)

These clinicians also checked in on how parents were doing and cared about what was happening beyond the hospital walls. Embracing this compassion diminished stress for parents and helped them to navigate their child’s PICU care.

The second subtheme was letting clinicians lead, which was described by one-third of participants (33%, n=5) as the comfort they took in knowing that clinicians were doing the very best for their child, so that they could trust their recommendations and medical decisions. One parent shared:

[Knowing] his neurometabolic doctor cares what happens to him and . . . knowing that he was in the absolute best care that he could possibly be in and leaving it up to their knowledge.

(Parent 10)

The third subtheme was giving into distraction, which was described by 27% (n=4) of participants and involved breaks from the stresses of the PICU and their child’s advocacy and care needs. Parents described using work, playing games on their phone, or social media as ways to decompress and escape. One parent shared:

When I have a break at the hospital ‘cause she’s got nurses keeping track of her, I’m so out of it because it’s all I can do to just cope and like play a game on my phone . . . You just don’t always have the energy to keep looking into their medical needs.

(Parent 13)

The fourth subtheme, described by 20% (n=3) of participants, was disconnecting from emotions and described parents’ relinquishing of emotions to be able to cope with the demands of getting their child the intensive care they needed. One parent shared:

I always tend to feel the emotions of things after we’re into it. I get those mounds of stress when we’re talking about taking him to the hospital, but once we get going, I think it’s kind of like autopilot . . . Sometimes I feel slightly disconnected . . . it can be kind of a heavy situation, but you’re not fully feeling it.

(Parent 25)

Parents specifically talked about being in “survival mode” and delaying the processing of their emotions so that they could better manage difficult information and circumstances.

The fifth subtheme was leaving it to faith and spirituality, which was described by 7% (n=1) of participants and referred to leaning on prayer and/or the support of a faith-based community to bolster their psychological well-being. Faith and spirituality were also described as positive affirmations, encouragement, and well wishes to the child and family that they centered on to guide them during difficult times.

What was helpful for us, being in prayer . . . having family and friends who were praying with us, sending us encouragement.

(Parent 20)

Based on these themes and subthemes, the analysis team developed example language that may support clinicians to acknowledge and cultivate these various parent coping strategies with family caregivers (Table 3).

Table 3:

Themes/subthemes with example clinician language to engage and support parents and family

Themes/Subthemes	Example Clinician Language
Self-activation
Advocating and showing up	“I want to make sure we are developing the best possible feeding plan for your child. Can you tell me more about what you think will work best for her as she recovers from this illness?”
Finding moments for self-care	“I’m glad that you are thinking about how to take care of yourself while your child is in the PICU.”
Seeking understanding and education	“I can see how important it is to you to learn what might be going on with your child and to make sure you are asking all the important questions.”
Accessing support from family and friends	“You're right, the ICU can be really scary. Maybe, if your child is ever admitted again, it sounds like having a family member or friend here with you might help you feel better supported. What do you think?”
Harnessing positivity	“It sounds like you understand our worries about how sick your daughter is at this time and that remaining positive is what would be most helpful in this moment to your family.”
Letting go
Being supported by compassionate clinicians	“We care a lot about your son, and I’m glad you feel how cherished he is by our team.”
Letting clinicians lead	“It means a lot to hear that you think he is getting good care here and that we are watching over things. Do let us know if there are ways we can do an even better job of this while your son is admitted.”
Giving into distraction	“It makes sense that you would need some downtime and breaks from making important decisions all the time. If it’s okay, I’d like to talk to the rest of the PICU team to let them know how important those moments are – and to try to limit interruptions if we don’t have new or urgent information. Would you like me to do that?”
Disconnecting from emotions	“It sounds like you have found ways to cope with new information – so that you can be there for your child.”
Leaving it to faith and spirituality	“I see how surrounding yourself and your child with encouraging statements from the Bible is important to creating a supportive space in the ICU.”

Discussion

Parents and family caregivers in this study described a constellation of strategies they utilize to navigate the stress and challenges that arise when their child is in the PICU. Many used both self-activation and letting go techniques to find their way amid these stressful experiences.

This study adds to existing literature on strategies that mitigate stress from parents around the time of their child’s critical illness.^17,18 Other studies that have evaluated sources of stress at different timepoints (i.e., acute care, home setting) have generally supported concepts from the complex care literature of parental advocacy, information gathering, and being there for their child as their child’s expert as helpful strategies.^7,19,20 Additionally, studies have suggested the importance of relationships with family, friends, and clinicians as critical forms of support for parents.^17,21 In studies among parents of children with other forms of serious illness such as advanced cancer, notions of maintaining hope, faith, and positivity have been shown.^22-26 Many of these themes were also described by participants in this study, suggesting that parents of children with SNI may utilize similar strategies around the time of stressful PICU experiences with their child.

Interestingly, this study also shows the various and seemingly opposing strategies parents employ to navigate stress. For example, subthemes such as: 1) advocating and showing up and giving into distraction, 2) seeking understanding and education and letting clinicians lead, and 3) harnessing positivity and disconnecting from emotions seem to be contradictory strategies. Although these subthemes may seem at odds, they are supported by existing psychological literature on coping and post-traumatic stress/growth.⁹ Specifically, a component of coping includes repertoire, or the bank of regulation strategies a person uses to manage stress - where diversity of strategies may be as important as how many total strategies a person has.^27,28 In other words, having coping strategies that are effective in a variety of stressful situations is critical – and therefore being able to tap into a range of strategies is essential for coping.²⁸ Similarly, there may not be a single direction or orientation a person uses to navigate stress. Instead, parents likely need a constellation of many strategies, akin to a “tool box”, so that they can utilize the strategy which fits a particular stressful moment at hand. ^8,9,29,30 Although some subthemes in our study were described by parents/family caregivers more often than others, it is likely that parents need to manifest different strategies at different times during PICU experiences. Additionally, for one parent there may not be strategies that are “good” (such as self-care) or “bad” (such as distancing/distraction), but rather multiple ways to cope in different circumstances.

Building on this, parents may need more supportive interactions in the PICU to process and navigate stress in their own ways at different times. Although this can be challenging for clinicians, judgement about parents and family caregivers being or not being present, being or not being vigilant, or being too much or too little of an advocate are likely unhelpful and potentially harmful to parents under duress. Instead, these strategies may vary for caregivers and even for the same parent depending on the circumstances – making it even more important for clinicians to accommodate the variety of ways parents navigate stress.¹⁸ Lack of awareness and attention to this has the potential to erode therapeutic alliance and impede supportive family-centered critical care.^7,14,19 Physicians receive little training on supporting parent coping, and therefore partnering with psychosocial clinicians such as social workers, chaplains, psychologists, interpreters, palliative care teams, and patient navigators among others is essential.

Ultimately, supporting parents and family caregivers of children with SNI in the PICU may be about facilitating the coping strategies each individual parent needs when they need it. Engaging with parents in this way through efforts in multidisciplinary primary and subspeciality palliative care may help parents to identify which strategies they are utilizing in the moment and help them build up this strategy more fully over the course of their child’s illness. Additional interventions that attend to parents preferred strategies and expose them to additional ones may be helpful. As themes/subthemes from our data suggest, future research that includes interventions that facilitate parental advocacy (e.g., personal narratives³¹) and that strengthen clinician compassion (e.g., bias reduction training³²) may be particularly useful for families of children with SNI.

This study has several limitations. It was a single-center study with a small sample size typical of qualitative research and chosen to balance diversity of study participants with feasibility. Interviews were conducted at one timepoint, which was during a period of high stress and after PICU discharge with the potential for recall bias. It also is unclear whether strategies parents employ to help with stress change or if one strategy becomes more helpful compared to other strategies over time. We also acknowledge that the stressful experiences among parents and family caregivers of children with SNI are likely to be much more complicated and longitudinal than this study was able to assess. In addition, we were unable to stratify our data by the child’s illness severity or parent/family level of experience but took these issues into account in inclusion criteria to obtain a range of perspectives. Additionally, this study included English-speaking parent and family caregivers only, limiting our understanding of the experiences of parents who prefer another language for their care.

Conclusion

Parents and family caregivers of children with SNI employ multiple ways to navigate stress in the PICU. Themes from this study can be used in developing interventions that are multi-faceted and flexible to meet psychosocial needs of parents and family caregivers of children with SNI.

Key Message.

This qualitative study of 15 parents of children with severe neurological impairment highlights various ways parents and family caregivers navigate stress in the pediatric intensive care unit, including both self-activation and letting go, with the most reported practices being advocating for their child and being supported by compassionate clinicians.

Abbreviations:

SNI

severe neurological impairment

PICU

pediatric intensive care unit