Meaning-Making Among Parents of Children With Severe Neurologic Impairment in the PICU

Abstract

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DOI: 10.1542/6345640450112

Video Abstract

BACKGROUND AND OBJECTIVES

Parents and family caregivers of children with severe neurologic impairment (SNI) experience many stressors, especially during their child’s critical illness. This study aimed to examine parent experiences around the time of their child’s PICU care to explore ways parents make meaning in relation to these stressors.

METHODS

This qualitative study of data from a single center in the United States followed Consolidated Criteria for Reporting Qualitative Research guidelines. One to one semistructured interviews queried parents’ psychosocial well-being around the time of their child’s PICU care. Eligible participants had a child with an SNI condition for >3 months admitted to the PICU for >24 hours with an expected length of stay >1 week.

RESULTS

Data were analyzed by a research team with expertise in palliative care, psychology, critical care, and qualitative methods. Fifteen family caregivers of 15 children participated. Children were a median of 8 years old (interquartile range 4–11.5) and 80% (n = 12) had congenital/genetic conditions. Parent/family caregivers were a median age of 39 years old (interquartile range 36–42.5); 20% (n = 3) self-identified as fathers and 47% (n = 7) as having to a minority racial background. Parents discussed ongoing meaning-making that occurred through domains of comprehension and purpose, and themes of understanding of other people and the world around them. Subthemes focused on appreciation/acceptance, adaptability/accountability, valuing all lives, and learning/teaching about their child.

CONCLUSIONS

Meaning-making may be an opportunity for support in the PICU among parents/family caregivers of children with SNI.

What’s Known on This Subject:

Children with severe neurologic impairment make up <1% of the pediatric population, but account for many PICU admissions in children’s hospitals. Parents/family caregivers of children with severe neurologic impairment face many stressors, which are heightened when navigating their child’s critical illness.

What This Study Adds:

This study suggests that aspects of meaning-making occur among parents/family caregivers in the context of their PICU experiences. Themes included comprehension and purpose, with subthemes focusing on appreciation/acceptance, adaptability/accountability, valuing all lives, and learning/teaching about their child.

Children with severe neurologic impairment (SNI) have a wide variety of central nervous system conditions that result in permanent or progressive motor and cognitive impairment.¹ Children with SNI have complex medical needs, and >75% are assisted by medical technology such as feeding tubes or respiratory supports to sustain their health care needs at home.^1–3 Although children with SNI make up <1% of the pediatric population in the United States, they account for a quarter of bed-days and about half of PICU admissions in pediatric centers.^4,5 Despite this, little is known about the experiences of their parents and family caregivers during these stressful times.

In the PICU setting, elevated distress among parents impacts family caregivers’ ability to advocate effectively and to make important medical decisions for their child during critical illness.^6–8 This stress likely extends beyond the baseline stressors many families of children with SNI experience because of the lifelong nature of their child’s condition and their expertise about their child’s health care needs.⁶ Thus, understanding and finding ways to bolster the psychosocial well-being of parents and family caregivers is imperative to PICU care for the child and their family.⁹

One important aspect of psychosocial well-being is meaning-making, which is defined as the process by which people understand, or make sense of, the events and relationships in their lives, as well as of themselves.^10,11 Meaning-making typically involves aspects of comprehension (ie, a cognitive process regarding what has been learned) and purpose (ie, a motivational process regarding how this learning goes beyond one’s self).¹² Meaning-making is a potential resource that can mitigate stress and improve well-being. It is often conceptualized globally (eg, Is life meaningful?) and situationally (eg, How do I make meaning from this event?), and assessed after the acute stress has passed.¹³ This limits an understanding of the process by which meaning-making occurs, which may be particularly relevant for families navigating SNI where stressors are chronic and ongoing.⁶ Yet, little is known about the meaning-making experiences of parents and families of children with SNI. This study aimed to examine stressful experiences among parents around the time of PICU care and to explore meaning-making as a way parents integrate these stressful situations into their lives.

Methods

This study was part of a larger mixed-methods study examining stress and psychosocial well-being among parents and family caregivers of children with SNI in the PICU. This study was approved by the children’s hospital institutional review board. We followed consolidated criteria for reporting qualitative research guidelines for rigorous qualitative methods.¹⁴ The study was conducted at a single academic pediatric center with a 32-bed quaternary PICU serving the largest region of the United States. Eligible parents and family caregivers were identified using the daily PICU census list and included those who were English-speaking and had a child:

1. ages 3 months to 25 years with an SNI condition (defined according to Allen et al¹ with the need for caregiver support for activities of daily living and communication) for >3 months and previous time at home (so participants had some baseline experience with their child’s condition before PICU admission);

2. admitted to the PICU for >24 hours with an expected length of stay of >1 week (to target long stays in the PICU); and

3. who were not expected to die within the next month.

Once eligible participants were identified, the study team then confirmed eligibility regarding SNI status, length of stay, and estimated prognosis with the primary PICU team. Parent and family caregivers were then consented in-person and given a $50 incentive at enrollment.

Semistructured, 1:1 interviews were performed as soon as feasible for the participant after PICU discharge either in-person in the acute care setting or by phone/videoconference once the child/family were home (for flexibility given participants’ caregiving responsibilities). Interviewers had qualitative (J.B., E.O.) and stress-trauma (E.O.) or pediatric palliative care (J.B.) professional training backgrounds and were not providing treatment for any of the children/families at the time of their study involvement. Interview prompts were piloted with 2 bereaved parents of children with SNI who were study advisors to test for relevance and understandability. Interview prompts queried participants regarding their experience during and after the time of their child’s PICU admission (eg, “Tell me about a difficult experience you have had as a parent in the ICU with your child. How did you get through it?”) (Supplemental Information). Interviewers used active listening and repeat-back techniques during interviews to confirm understanding of participants’ responses. Interviews were audio-recorded, professionally transcribed, and deidentified before analysis.

Interview transcripts were uploaded into Dedoose,¹⁵ a Web-based application for analyzing qualitative data. The analysis team included pediatric palliative care (J.B.), health psychology (M.O.), and a qualitative research expert (K.B.). The analysis team used thematic analysis of data. To develop the codebook, each transcript was read as it was completed by the primary and secondary coders (J.B., E.O.) to develop a list of concepts and potential codes. Once a preliminary codebook was established, the codes were then applied across 2 transcripts in full, reviewed in discussion, and revised to create the final codebook. The primary coder (E.O.) then reviewed all the remaining transcripts to apply codes directly, whereas the secondary coder (J.B.) used the memo function to indicate areas of coding disagreement. Discrepancies between the coders were resolved through adjudication during a series of 1-hour videoconferences among the entire analysis team (E.O., J.B., M.O., K.B.). This process was repeated until consensus and code saturation were reached.¹⁶ Coded data were then broken down into themes and then iteratively analyzed using existing meaning-making conceptual models to structure data interpretation.^10,13 This process involved iterative meetings with the analysis team, which reviewed the interplay between the conceptual models and the themes/subthemes that emerged from the data.

Results

Thirty-four parents and family caregivers were approached for this study. A total of 25 parents participated in the study, and of those, 15 parents/family caregivers of 15 children participated in interviews and were included in this analysis (Table 1). Children were a median age of 8 years old (interquartile range. [IQR] 4–11.5; range 1–21); the majority had congenital/chromosomal SNI conditions (n = 12, 80%) and were assisted by technology (n = 15, 100%). In the 12 months before study participation, 73% (n = 11) had 1 to 2 and 27% (n = 4) had 3 to 5 PICU admissions. Parent and family caregiver participants were a median age of 39 years old (IQR 36–42.5; range 28–55); 20% (n = 3) self-identified as fathers, 13% (n = 2) as Asian American, 13% (n = 2) as Black or African American, 13% (n = 2) as American Indian or Alaska Native, 6% (n = 1) as Native Hawaiian or Pacific Islander, and 56% (n = 9) as white. Interviews were conducted a median of 11 days after PICU discharge (IQR 5.5–15; range 0–27) and lasted a median of 50 minutes (IQR 39.5–52.5; range 22–63).

TABLE 1.

Demographics

Characteristic	Results
Children	N = 15
Child age, median in y	8 (IQR 4–11.5; range 1–21)
Child gender, n (%)
Female	8 (53)
Male	7 (47)
Child race,a n (%)
White	9 (56)
Black or African American	4 (25)
Asian American	2 (13)
American Indian or Alaska Native	1 (6)
Child’s ethnicity, n (%)
Non-Hispanic	11 (73)
Hispanic	4 (27)
Child diagnosis, n (%)
Congenital/chromosomal	12 (80)
Static central nervous system conditions	3 (20)
Child assistance by technology at home,a n (%)
Feeding tube	15 (100)
Noninvasive positive pressure ventilation	3 (20)
Tracheostomy with/without ventilator	3 (20)
Ventriculoperitoneal shut/baclofen pump/vagal nerve stimulator	2 (13)
Child’s number of home medications, n (%)
3–5	1 (7)
6–10	5 (33)
11–15	4 (27)
>15	5 (33)
Child’s number of subspecialists seen in the last 12 mo, n (%)
6–10	6 (40)
11–15	6 (40)
>15	3 (20)
Child’s number of PICU admissions in the last 12 mo including recent admission, n (%)
1–2	11 (73)
3–5	4 (27)
Child’s code status full code, n (%)	15 (100)
Parent/family caregiver	N = 15
Caregiver age, median in y	39 (IQR 36–42.5; range 28–55)
Caregiver relationship to child, n (%)
Mothers	12 (80)
Fathers	3 (20)
Caregiver race,a n (%)
White	9 (56)
Black or African American	2 (13)
Asian American	2 (13)
American Indian or Alaska Native	2 (13)
Native Hawaiian or Pacific Islander	1 (6)
Caregiver ethnicity, n (%)
Non-Hispanic	12 (80)
Hispanic	3 (20)
Caregiver 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)
Caregiver reported annual household income, n (%)
<$50 000	2 (13)
$50–100 000	7 (47)
>$100 000	3 (20)
No response	3 (20)
Caregiver reported number of other people in the home, median	4 (IQR 3–5; range 0–8)

^a Multiple selections possible.

We mapped interview data onto 2 theoretically derived^10–13 domains of meaning-making:

1. comprehension, a person’s understanding of who they are, what the world is like, and how they fit into it; and

2. purpose, a person’s discernment of, commitment to, and engagement in their personally meaningful goals.

Within each of these domains, 2 similar themes were used:

1. personal understanding and change; and

2. understanding and changes appreciated in other people and in the world.

Within each theme, there were 2 to 3 subthemes that emerged, which are reviewed in detail below and italicized for clarity. Additional quotes from participants are shown in Table 2.

TABLE 2.

Meaning-Making Domains, Themes, Subthemes, and Representative Quotes

Domains, Themes, and Subthemes	Quotes
Comprehension: A person’s understanding of who they are, what the world is like, and how they fit into it
Personal understanding
Appreciating life’s moments	• There has been a bit of a gift in all of it because I don’t take for granted the moments that are good and the simple things, like [my child] holding his head up, or being able to use one of his hands again. It was tiny moments ... even if it’s just us being together. (Parent 6) • [Our experiences have changed] our zest for life or perspective on life. ... Now I see it as a much more delicate thing that’s not to be taken for granted, because it can change in a moment’s time. (Parent 4) • There is going to be a collective wound when we end up losing her, and I hope that we’ve done a good job working through the emotional pieces of that with our kids anticipat[ing] and just embracing every d and every moment with her. (Parent 3)
Accepting what’s uncontrollable	• It just is what it is, and that’s it. Sometimes, you have to rest in that and then keep moving. Sometimes, you have to dismiss how differently your life is, because reflecting on it too much isn’t really going to answer very many questions. (Parent 11) • None of us chose this life, but we can make the best with what we’ve got and help other families do the same. (Parent 6) • I can’t predict, nor can I control everything, and that’s a big thing for me. … I’ve learned that I don’t always get a say in what happens. (Parent 14)
Acknowledging adaptability and growth	• I was heading into my 30s by the time that [he] was diagnosed, and it flipped our lives upside down. I’ve learned more than I ever want[ed] to know about medical stuff. (Parent 6) • What we’ve learned also is we know how to do a whole bunch of medical things, which is very interesting. (Parent 12) • You know, she was born with her condition, which led [to] her [being] in a wheelchair, but we functioned well as a family. We integrated [within] our community as a family, and [our daughter] participated in school activities as an individual. (Parent 4)
Understanding of other people and the world
Seeing uniqueness and value in all people	• What I’ve learned by being [child’s] parent is that all people have value; that everyone has a purpose and a reason for being on the earth. (Parent 14) • I’ve learned from my son is how full of a life people with neuro things have, as full as anyone else’s. (Parent 15) • Our main focus [is] keeping [our child] well, but we want them to be seen, known. … Not necessarily with the medical things, but just as a human. (Parent 14)
Witnessing my child’s impact	• [Our child] always had a way of really attracting people to him. People have always really liked him. … wanting people to see that he’s not just special to our family; he’s special to other people, too, and when he’s healthy, people are excited and happy. When he’s not, his absence is felt, too. (Parent 11) • Any little thing that she does, or any type of interaction that she has with the staff, it warms hearts. I find that holistically, across the board … she warms the hearts of even the tough and crispy staff. … She’s gotten under their armor and they’re very [glad] to see her and they get a smile from her. Then, it’s a big d in their lives, too. (Parent 3) • [Our child] makes everyone … a little calmer. He’s very relaxing and fun, and makes you enjoy things differently than you did before him. (Parent 12)
Purpose: A person’s discernment of, commitment to, and engagement in their personally meaningful goals
Personal change
Being responsible and accountable	• I learned that there’s many doctors that come and go, and that I have to really advocate for her, ‘cause I am the one who knows her more. I think the first time I got into the hospital, I really was not sure what to say. I was very intimidated on what I could and could not say, but the more that I’m here at the hospital, the more that I know that I can say a lot more for her and advocate for her, and I have to really be like, ‘No, this is what she has to do,’ or ‘This is what has worked in the past.’ (Parent 9) • Before she was even born, it was all-consuming, because I was in the hospital for 2 wk trying to keep her in my belly, and then once she came, she went straight to the NICU and had lots of complications, and then just ever since then, she’s beyond anything I could’ve imagined, both in challenges and amazingness. … But I also have my d where I’m just beyond tired and I need time. It’s a lot, but she’s amazing and been my whole life. (Parent 1)
Implementing my skills	• We can nurse him back up from his sick settings to baseline, ‘cause he’s a slow mover. We understand him and his needs, and [his doctor] looked at him and said, ‘cause he knows us and what we’re comfortable with, was able to tell us, ‘You know we would trust you because of your experience and how we see you take care of him to take him home before he’s out of the sick area,’ if we wanted to, and that was really good for us to hear. (Parent 15) • [The clinician’s said] ‘Okay, if you feel like you can handle her care, knowing that she needs suctioning every so often and an inhaler every 4 h all throughout the d and night, it’s up to you. If you feel comfortable, then, yeah, we’ll approve it and let you go home.’ And that … they at least trusted that I was able to complete the return to baseline in a home environment, which was nice. (Parent 3)
Learning patience and how to be a better person	• I think it really has just humbled me and taught me to be patient and be a better person in general and not be so short with people. It’s really opened my eyes to a lot of things. (Parent 8) • This is the only parenthood I know, so I don’t know that I’ve changed as a parent, ‘cause she’s always had health concerns and she was born with these health concerns. … Definitely changed me as a person. I think it’s definitely made me a little more fierce, a lot smarter in a lot of ways, a lot stronger in a lot of ways. (Parent 1) • I’ve said so many times, [child] has taught us so much about just normal life things, without ever uttering a word. Just resilience and acceptance and love. (Parent 14)
Changes in other people and the world
Centering my family	• It’s completely changed the way I think about life and my kids, and pretty much we just live and breathe our children. Every decision we make is revolved around them and what’s best for them and their quality of life. (Parent 6) • I like to say that my kids are super-spoiled. They have a weight that they carry with all of the stuff that we have them help us with with [our child], and so a little spoiling to try and maybe balance out. (Parent 3)
Being a teacher	• That’s all I can do and just keep going, at the end of the d, ‘cause that’s all that matters, is that I’m educating people on things that they don’t know. (Parent 8) • The team often defers to me as the expert on [my child]. … They’re the medical people and I’m the expert [on my child]. I’m not pretending like I know all the things about all the things, but I do know her and what works and what’s worked past and how she manages sickness. (Parent 3)

Domain 1: Comprehension

Within comprehension, the theme of personal understanding focused on how parents and family caregivers thought that they had meaningfully changed in their understanding of themselves. Within this theme, 3 specific subthemes emerged: (1) appreciating life’s moments, (2) accepting what’s uncontrollable, and (3) acknowledging adaptability and growth.

In appreciating life’s moments, participants described feelings of gratitude and “not taking for granted” the small things in life. These small things included the developmental milestones their child reached or moments together as a family. One parent shared:

“Being a parent who now has experienced the PICU more than once and just knowing that, for us, life is unpredictable, so these moments … that other families get to experience and the joy and happiness with my kiddos … those are the moments that are so important.” (Parent 6)

Accepting what’s uncontrollable was another subtheme, which, to participants, meant releasing their need to push back against or change/modify things for their child, their family, and their own experience. Participants described adopting the mentality of “it is what it is” and “making the best with what we’ve got.” One parent shared:

“What I’ve learned about myself is that I can’t predict, nor can I control everything … I’ve learned that I don’t always get a say in what happens.” (Parent 14)

Finally, participants described acknowledging adaptability and growth as a third subtheme. This was particularly important regarding participants’ medical knowledge and skills, and “learning how to troubleshoot” technology and their child’s health issues. One parent shared:

“Having a kid on a trach is learning how to troubleshoot, because everything that connects to the trach has multiple failure points.” (Parent 15)

Within the domain of comprehension, the second theme was understanding of other people and the world. This theme described the ways in which caring for their child changed participants’ understanding of other people and the world around them. Within this theme, 2 specific subthemes emerged: (1) seeing uniqueness and value in all people, and (2) witnessing my child’s impact.

In seeing uniqueness and value in all people, participants shared how their child had opened their eyes to “how full of a life” children with neurologic disabilities have; “as full as anyone else’s.” One parent shared:

“I have more compassion for other people just in general because of her.” (Parent 5)

For the subtheme of witnessing my child’s impact, participants described the ways they understood and interpreted their child’s interactions with other people. Participants recalled relationships that their child had with other neurotypical children and other members of their extended family, and how these interactions were deeply loving, respectful, and important. One parent shared:

“He’s really sweet and makes everyone a little more loving.” (Parent 12)

Domain 2: Purpose

The second domain described by participants was purpose, or a person’s discernment of, commitment to, and engagement in their personally meaningful goals. Within the theme of personal change, 3 subthemes emerged: (1) being responsible and accountable, (2) implementing my skills, and (3) learning patience and how to be a better person.

In terms of being responsible and accountable, participants discussed how they took better care of themselves because they needed to be well enough to advocate and care for their child, especially in the PICU setting. One participant shared:

“It’s developed a greater sense of responsibility and accountability … I’m accountable to her … I have to pull through and make sure I make [things] happen for her.” (Parent 7)

The subtheme of implementing my skills involved participants enacting their own skill sets to meet their child’s needs. This was often described because participants noticed clinicians trusted them to continue technical/challenging aspects of PICU-level care for their child at home. One parent shared:

“We ended up getting to go home on Christmas Eve, ‘cause it was really important to me … but she was not back to baseline by any stretch … but the team definitely deferred to me.” (Parent 3)

Finally, participants described the subtheme of being more patient and how to be a better person. This culminated in the actions of being a parent who was able to love more fully and openly. One participant shared:

“I think he’s made me a better parent all the way around. Not to say I don’t get frustrated. He’s 16, so he drives me nuts sometimes, too, like he’s supposed to, but, overall, I’ve learned a little more understanding and patience.” (Parent 6)

Within the domain of purpose, participants also described how their experiences had resulted in changes in their relationships with other people and the world. Within this theme, 2 specific subthemes emerged: (1) centering my family, and (2) being a teacher.

For the subtheme centering my family, parents described how their life was focused on being present with their child with SNI and their siblings. One participant shared:

“It changed the way that I viewed family … We always were like a team, but I would say we’ve hunkered down with the kids a little more.” (Parent 3)

Finally, participants described the subtheme of being a teacher to other people surrounding their child’s illness, technology needs, and quality of life. This not only included the parents, but also the child through what they taught clinicians in the PICU and the broader public. One parent shared:

“Even to the outside public, having a child with special needs, you’ll get looks sometimes … In the beginning, when we first had our trach, I would get really upset that people would give us these looks or ask these questions, but [now] I’m like, ‘Well they’re only asking because they don’t know.’ Now, the job is to educate.” (Parent 8)

Discussion

We found that, during stressful life experiences, parents and family caregivers of children with SNI in this study engage in meaning-making. For participants, this occurred both in terms of their personal comprehension and purpose, as well as their understanding and actions toward other people and the world around them.

This study adds important information about how some parents and family caregivers of children with SNI experience and process periods of high, ongoing stress. This is critical to PICU care because studies suggest parental distress stems from the added complexities of prognostic uncertainty and health setbacks for their child.^17–19 Parents have also reported that retelling their child’s story and the need to advocate for their child’s specific care needs contribute to stress.^20–23 This study suggests that, alongside these stressors, come potential opportunities for meaning-making, including parent/family caregivers’ ability to understand themselves and other people differently (comprehension) and to take action to better the health and well-being of their child and family (purpose).

In this study, we leveraged existing foundations in meaning-making theory to explore the experiences of parents and family caregivers of children with SNI in the PICU context.¹³ Many of these theories posit meaning-making as a process of integrating lessons learned from stressful experiences to make sense of tough times in the months to years after the event.^24–28 Meaning-making describes the process of forming understanding and perspective, whereas meanings made are the resulting lessons learned. Our findings suggest parents and family caregivers of children with SNI have similar experiences as other people going through stressful circumstances and that meaning-making may occur alongside stressful life events.^24,26 This process of ongoing meaning-making may be particularly important for families navigating chronic serious illness.^29,30 Specifically, in this study, parents described actively building a greater understanding of themselves and their experiences in ways that were intertwined with difficulties. Additionally, there also was notable overlap of some themes and subthemes. For example, adaptability and growth pertained not only to learning about medical technologies, but also to appreciation for life and acceptance. Given that many of our participants self-identified as fathers and/or as having a minority racial background, this study also provides an opportunity to learn more about meaning-making from a diverse group of caregivers.

Similarly, in instances of disability when global meaning may be based on societal expectations of suffering or stigma related to bias about quality of life, meaning-making is likely important.^31,32 For example, parent/family caregivers may have preconceived notions of SNI and may come to redefine expectations for themselves, their child, and their family through a process of meaning-making. Specifically, many of the themes from participants in this study relate to personal growth and actions as learners and teachers, suggesting that these aspects of advocacy for their child in the health care setting and in society may be impactful. This may be particularly important in the PICU setting, where clinicians must partner with parents and family caregivers to understand the child’s health and wellness holistically so that the child can receive the best care possible.^7,33 Additionally, PICU clinicians may have a better understanding of a particular family by learning more from parents about meanings made from their experiences. This may be helpful in anchoring difficult conversations, medical decision-making, and guiding supportive care for parents during their child’s care.

Because stressful experiences among children with SNI and their families are likely to persist, finding opportunities for meaning-making and integration of these stressors with life’s meaning may be important areas for future research on psychosocial support for families.³⁴ Specifically, clinical applications in the health care setting might include opportunities to meet with other families for peer support groups to discuss shared experiences,³⁵ interventions to highlight families’ perspectives on their child’s health and well-being through narratives or photos,^36–38 and greater parent/family caregiver psychological support through interprofessional services to process their experiences.³⁹ The experience of stress and strategies to engage families are likely to vary by race, ethnicity, culture, gender, religion/spirituality, and other aspects that shape an individual’s experience and remain important areas for further research. Additionally, not all parents may make meaning in the PICU context.

This study has several limitations. It was a small, single-site study of mainly mothers, and additional parent participants may have identified other aspects of meaning-making. Interviews were conducted up to 1 month after PICU discharge and therefore were subject to recall bias and did not assess meaning-making at multiple time points. All participants were English-speaking, and therefore information from families who prefer a language other than English were not captured. Despite these limitations, this study adds important information about meaning-making among parents and family caregivers of children with SNI to the literature.

Conclusions

PICU care can be stressful for families, yet this study suggests that meaning-making may occur through the ways parents and family caregivers of children with SNI find comprehension and purpose in these experiences through appreciation/acceptance, adaptability/accountability, valuing all lives, and learning/teaching about their child.

Glossary

IQR

interquartile range

SNI

severe neurologic impairment