Parents Are the Experts: A Qualitative Study of the Experiences of Parents of Children with Severe Neurological Impairment During Decision-Making

Abstract

Context:

Parents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology/surgery, goals of care/advance care planning, or transitions of care.

Objective:

This study describes the experiences of parents of children with SNI during decision-making.

Methods:

Eligible participants were parents facing a decision for a child with SNI admitted to acute or intensive care units at a single tertiary pediatric center. Parents completed 1:1 semi-structured interviews and brief surveys between August 2019-February 2020. Demographic information was extracted from the child’s electronic health record. A team of palliative and complex care researchers with expertise in qualitative methods used thematic content analysis to formulate results.

Results:

25 parents participated. The majority had children with congenital/chromosomal SNI conditions (n=13, 65%), >5 subspecialists (n=14, 61%), and chronic technology assistance (n=25, 100%). 68% (n=17) were mothers and 100% identified as being their child’s primary decision-maker. Responses from parents included 3 major themes: 1) our roles and actions; 2) our stresses and challenges; and 3) our meaning and purpose. Responses highlighted the pervasiveness of parental decision-making efforts and parents’ advocacy and vigilance regarding their child’s needs. Despite this, parents often felt unheard and undervalued in the hospital.

Conclusions:

During hospitalizations, when parents of children with SNI often face high-stakes medical decisions, interventions are needed to support parents and ensure they feel heard and valued as they navigate their child’s medical needs and system challenges.

Key Message:

This qualitative study of parents of children with SNI facing decision-making in the hospital revealed not only the demands and stresses but also the meaning and purpose parents experience. As parents navigate their crucial roles, tools are needed to empower parents to be heard and to advocate for their child.

Introduction

There are a growing number of children with severe neurological impairment (SNI) in the United States.^1,2 Children with SNI have static or progressive central nervous system conditions resulting in permanent cognitive and motor impairment as well as medical complexity.³ Many children with SNI are assisted by chronic medical technology including supports for basic needs such as feeding (e.g., gastrostomy tubes) and breathing (e.g., non-invasive positive pressure ventilation).⁴ In the hospital, parents of children with SNI often face high-stakes medical decisions for their child including decisions regarding technology/surgery, goals of care/advance care planning, or transitions of care.⁵

For clinicians to be able to provide the best care possible for children with SNI, they must understand the experiences of parents. This is necessary because parents of children with SNI hold key information about their child’s health and well-being.^6,7 Specifically, parents are the most knowledgeable regarding their child’s physical and emotional needs as well as how their child reacts to illnesses and responds to treatments.⁵ For these reasons, parents’ experiences impact how successfully they can relate the complex and deeply individualized interplay of medical information, resource needs, cultural considerations, and values that are necessary to high-stakes decision-making for their child. And yet, there is little known about how parents of children with SNI experience the process of decision-making.^5,8–9

This study aimed to explore the experiences of parents of children with SNI, with a focus on decision-making and the communication practices that best support them in caring for their child in the hospital setting.

Methods

This study followed COREQ guidelines for qualitative research.¹⁰ A purposive sample of parents of children with SNI were selected from the acute and intensive care units at a single tertiary pediatric referral center. Interviews covered 3 major topics: 1) decision-making; 2) therapeutic alliance; and 3) communication (Appendix 1). Participants were: 1) the parents or legal guardians of a child 6-months to 25-years-old with SNI (defined as static or progressive central nervous system conditions resulting in permanent cognitive and motor impairment as well as medical complexity); 2) English-speaking; and 3) facing at least 1 high-stakes medical decision for their child (defined as decisions regarding technology/surgery, goals of care/advance care planning, or transitions of care). Children had to have been diagnosed with their SNI condition at least 6 months prior to their parents’ participation. To limit undue stress on parents, children also had to be admitted >48 hours and their primary clinical team had to approve of their parents’ potential study participation.

Once eligible parents were identified, they were placed on a study eligibility list and the study team (HL, KS or JB) made attempts to approach parents about the study on a weekly to twice-weekly basis depending on study team and parent availability. All study team members conducting parent interviews had training in interviewing parents of children with SNI and were not caring for the child at the time of their parent’s study participation. Parents provided consent to complete interviews, brief surveys, and to have demographic information extracted from their child’s electronic health record. Semi-structured interviews were completed at the time of enrollment whenever possible, but also could be scheduled for a subsequent time. Interviews lasted an average of 45 minutes (range 19–82), took place between August 2019-February 2020, and were completed in-person in private patient rooms, a nearby conference room on the unit, or by phone depending on COVID-19 restrictions. All interviews were audio-recorded and professionally transcribed with identifying information removed prior to analysis. Notes were also taken during interviews for participant checking in real-time. After interviews, participants completed brief demographic surveys on REDCap. The study team (HL, KS or JB) then extracted demographic information about the child’s SNI diagnosis, secondary diagnoses, age, chronic technology assistance in the last 12 months, number of specialists seen in the last 12 months, number of hospitalizations in the last 12 months, and code status from the child’s electronic health record into a study case report form in REDCap.

The study team subsequently conducted thematic analysis through an iterative multistage process. Transcripts were uploaded into Dedoose¹¹, a web-based software for conducting qualitative analysis. Comprehensive analysis focused on the identification of key themes across the dataset related to the experiences of parents. Members of the study team (JB, AT, HL, KS, DJ) iteratively developed a codebook of prefigured and emergent codes. The multidisciplinary study team included qualitative researchers with expertise in complex care and palliative care for children with SNI, communication science, and psychosocial intervention development. All transcripts were coded and reviewed by at least two study team members. Any outstanding issues were discussed with the study team during weekly meetings until code saturation was reached.¹² Excerpts from codes pertaining to parents’ experiences were then analyzed for relevant themes by all the authors during a series of video-conferences where data were presented, grouped, and regrouped based on discussion until final themes and subthemes were reached. In addition to describing their experiences with decision-making, parents also shared suggestions for how clinicians could improve communication with families and their direct interactions with children with SNI. This analysis focuses on our primary aim of parental decision-making experiences; secondary analyses will be presented separately. This study was approved by the Seattle Children’s Institutional Review Board.

Results

Sample characteristics

A total of 25 parents and legal guardians participated. Another 3 parents consented but did not complete interviews (2 due to lack of follow-up and 1 due to withdrawal from the study after becoming too busy) and 1 parent declined participation. Parents were a median age of 38 years-old (IQR 35,48) and 24% were fathers (n=6) (Table 1). Parents represented multiple races, ethnicities, and levels of education. Participants’ children were a median of 8 years-old (IQR 5,15). The majority had congenital/chromosomal conditions (n=15, 65%). 100% of the children were chronically assisted by technology supports, 61% had >5 subspecialists (n=14), and 53% had been hospitalized >2 times in the prior 12 months (n=12).

Table 1:

Parent and child demographics

Variable	Results
Parent	N=25
Age in years, median [IQR]	38 [35,48]
Parental role, n (%)
Mother	17 (68)
Father	6 (24)
Legal guardian	2 (8)
Race/Ethnicity, n (%)
White, Non-Hispanic	17 (68)
White, Hispanic	2 (8)
American Indian or Alaska Native	1 (4)
Asian American	5 (20)
Level of education, n (%)
Less than high school	1 (4)
High school	4 (16)
Some college/Associate degree	8 (32)
Bachelor’s degree	4 (16)
Graduate degree	6 (24)
Other	2 (8)
Number of people in the home, n (%)
1–2	6 (24)
3–5	13 (52)
6–10	6 (24)
Total number of children, n (%)
1	5 (20)
2–3	12 (48)
4–6	7 (28)
>6	1 (4)
Child	N=23
Age in years, median [IQR}	8 [5,15]
Primary diagnosis, n (%)
CNS static	6 (26)
CNS progressive	1 (4)
Congenital/chromosomal	15 (65)
Pulmonary	1 (4)
Technology use, n (%)	23 (100)
Respiratory (NIPPV, Trach/Vent)	17 (74)
Gastrointestinal (NGT, GT, GJT)	20 (87)
Neurological (VP shunt)	4 (17)
Other	5 (22)
Number of subspecialists, n (%)
1–2	1 (4)
3–5	8 (35)
6–10	14 (61)
Number of hospitalizations in last year, n (%)
1–2	11 (48)
3–5	8 (35)
6–10	2 (9)
>10	2 (9)
Limited code status, n (%)	4 (17)

IQR: interquartile range; CNS: central nervous system; NIPPV: non-invasive positive pressure ventilation; Trach/Vent: tracheostomy/ventilator; NG: nasogastric tube; GT: gastrostomy tube; GJ: gastrostomy-jejunostomy tube; VP: ventriculoperitoneal

Study Findings

Although interview questions focused on experiences with decision-making, parents shared a broad range of perspectives related to their interactions with the healthcare system and their roles and identities as caregivers. These perspectives fell into 3 major themes: 1) our roles and actions; 2) our stresses and challenges; and 3) our meaning and purpose (Figure 1). Themes were named from the point of view of parents to emphasize their perspectives. Overall, parents were very consistent across themes and those presented represent the predominant themes that emerged from the data. Themes and subthemes are listed in Table 2 and are explained in detail below.

Table 2:

Themes, subthemes, and representative quotes regarding the experiences of parents of children with SNI

Theme	Subtheme	Representative Quotes
Our roles and actions
	We advocate and integrate information	• Neurology is waiting for the seizure burden to go down to give a clear thumbs up. ICU is waiting for the copious saliva to not be so drooly . . . everybody’s waiting for something, but you’re the parent there with your kid and your kid is kind of in this like if you think of an airplane waiting to land at an airport, they call it a holding pattern where they keep flying in a big circle. You’re in this hold pattern waiting and like ‘When can we land?’ What’s gonna give? . . . What do we do?’ (Parent 20) • A couple of weeks ago we were dealing with some really acute pain. You know the doctor who I’ve known for a long time wasn’t aware of how much pain. So, I finally had to just say, “It’s a 10.” And she said, “Well 10 would be, you’re writhing in pain.” And I said, “That’s what she was doing.” (Parent 1)
	We are attentive and vigilant	• We were basically saying ‘Do not do anything without telling us first.’ In this kind of setting, that’s kind of a difficult thing to do, ‘cause you’re supposed to trust the doctors. I’m sure a lot of parents do . . . They think what the doctor thinks is the right thing to do, but I don’t believe that. I believe that parents actually know. I mean if you’re informed and you do educate yourself, then they know more about your child . . . what works and what doesn’t. (Parent 13) • And [the clinicians] just kind of look at me for answers, because I have the answers. I can read between the lines of normal communication into eye contact and body language to see where he’s comfortable and not comfortable, and what’s wrong with him and what’s not wrong with him, because I’m willing to sit there by his bedside for as long as it takes. (Parent 4)
	We adjust expectations and resources within our lives	• Because it also involves our retirement, it also is that reflecting on ourselves and trying to figure out what that’s gonna look like and how do all those pieces fit together? It’s more than just helping one person. We have a 21-year-old kid who’s in college . . . what she decides to do won’t affect our retirement and our ability to provide for anybody, but our son’s decisions, what we make for him, will affect us for the rest of our lives. So there’s a whole different set of variables. (Parent 10) • The lack of social services when we’re home is huge. They’ve cut so many services, and so we get no respite. Finding quality care providers is impossible. I think some of the clinicians assume that there are services out there and there are safety nets, but a lot of the nets are broken. We’ve had two days of respite in ten years, and it would be nice to go to the kids’ graduations, or/and we do everything as single parents ‘cause somebody’s home with [our child]. (Parent 23)
	We are responsible for decisions even when things are uncertain	• We’ve made a lot of decisions along the way . . . and some with more information, and some with less information. Obviously a lot of decisions are made with the consult of doctors and things, but as parents you also have to make decisions based on knowing your child and reading them through the process as well. (Parent 1) • It’s challenging when you’re given a lot of options and each option could carry a very positive, but you have to choose which is the best, ‘cause it’s easy to think about the disadvantages. (Parent 18) • It’s from all sides. It’s definitely from the care team, which is like ‘Hey, you know we can’t tell you what to do, but here’s what it is,’ but then it’s also pressure on yourself, ‘cause I want to do the best thing that I possibly can, and obviously if that’s gonna be a long-term thing and it’s gonna be helpful and give her a better quality of life, I get that, but then at the same time, ‘What if you didn’t do it?’ It’s just hard to say, and you would never know. It’s just going back and forth. (Parent 8)
Our stresses and challenges
	We feel isolated and on our own	• There’s no one out there that navigates you through this. Every agency has different pieces of the pie . . . and no one person guiding you through the maze. (Parent 10) • I can’t expect someone else to care for my daughter the way I do. That’s unrealistic . . . But that’s the way it is, it’s exhausting, emotionally and physically and mentally. (Parent 1)
	We get discouraged with setbacks and don’t always feel listened to	• I don’t always feel like when I have a concern about something to do with [my daughter’s] care that involves multiple specialists, that I’m being taken seriously because I’m not a medical doctor. (Parent 16) • We have 18 years of experience with [my son] and knowing what works for him, and bringing his doctor along is always tough because they always want to start from the beginning and do things that we’ve already tried and failed at. (Parent 10)
	We worry with the weight of responsibility on our shoulders	• I knew I wanted her to have a trach for a while, but it was actually like making the decision to make it more real. It’s really scary . . . I was afraid of ‘What if she doesn’t wake up from surgery? What if she doesn’t make it through? She’s so tiny.’ (Parent 5) • A lot of the times I’m asking these doctors to do things for my child that I’m making recommendations and asking them if the recommendations that I’m asking is appropriate - Is it something we can do? - and that feels a little insane to me, that I feel like that’s role reversal, and then it makes me feel anxious, what if I’m not asking the right thing? (Parent 16)
	We don’t feel our personal needs are met	• I’ll tell you it’s exhausting, I’m exhausted. And now I’m exhausted from 7 months of really, really hard work. We probably would have been exhausted anyways but I don’t know if I have fully grieved yet . . . I’ve had very few conversations, real conversations [about how it feels as a parent]. (Parent 1) • Just to see somebody walk by [like] a nurse and they not smile. I get that everybody has bad days, but, man, their days cannot be as bad as the people that are at this hospital with their children. (Parent 25)
Our meaning and purpose
	We transform with our changing reality	• When I first saw her rolling back from [tracheostomy] surgery, I started bawling because . . . it was scary at first. But now I just pick her up and do my thing and it’s actually not as different from our life before. (Parent 5) • Initially they gave him two to three years, five max, and he turned 15. A lot of the doctors, I could tell they weren’t expecting him to be 15, for sure. Well neither did we . . . We just follow [our son’s] leads and let him dictate how things are gonna go. (Parent 24)
	We provide a foundation for our child	• Our goal is to give this little 100% disabled forever baby the best quality of life possible. (Parent 14) • I was here every day to work with her. . . the nurses could do it, but I also want my daughter to know that dad is here, he’s committed to make sure that you have every opportunity to succeed, and this is how life is going to be, as long as it needs to be. (Parent 10)
	We experience personal growth and find strength	• [My daughter is] teaching me a lot about being patient and trusting and all of that. (Parent 9) • You’ve got to chalk it up to ‘This is well-learned stuff here.’ You take the blows and the hits, but also what I learn out of this is what I get to contribute back to the world and say ‘This is what you can overcome.’ (Parent 4)

Theme 1: Our roles and actions

Parents described the myriad of important roles and actions they played in caring for their child and in supporting decision-making. Many parents discussed their large role in advocacy on their child’s behalf. This ranged from being their child’s voice, to interpreting symptoms, to working with clinicians to ensure their child had the care or treatment they needed.

I told myself, ‘He can’t advocate for himself, tell you ‘Ow, this hurts,’ or ‘Please don’t do that,’. . . so I have to be his voice. (Parent 24)

Parents also discussed the importance of being informed about medical complexities pertaining to their child’s health. Some parents described the actions they took to avoid stagnation in their child’s hospital care.

I’m the one pushing for decannulation. I think she can do it. I don’t think she needs the trach. I’m having to really advocate for that. (Parent 1)

Parents also described the overwhelming need for attentiveness to their child’s needs in the hospital setting. Specifically, parents discussed concerns about hospital staff being able to meet their child’s very individualized care needs. Additionally, parents shared the need to be a part of every decision because they knew their child best, were able to interpret their child’s symptoms, and were able to think about their child’s overall quality of life.

I do not like sharing custody of my daughter with a hospital, because I’m always concerned over what kind of care she’s going to receive . . . I can’t be with her 24/7 all the time, and what decisions are going to be made when I’m not present, and are they things in her best interest? (Parent 16)

Another action commonly discussed by parents was the need to adjust expectations and financial resources. Parents discussed the time needed to care for their child, and that this meant putting a lot of things on “the back burner” in terms of their own needs and the needs of their other children.

He can’t communicate like other kids can. So when you stop and think about how much time you’d have to pay attention [and] what it takes to recognize things when they happen . . . you’ve really got to invest a lot of yourself in that . . . and for other things going on . . . we’ve had to put a lot of things on the backburner. (Parent 4)

Finally, parents talked about their role in making the ultimate decisions for their child despite incomplete information.

I don’t feel like it’s anybody else’s decision, other than me and [my son’s] mom, but I wish there was a more clear-cut way to make the decision . . . there’s no right or wrong for anything. (Parent 13)

Many parents felt this was especially difficult because of their child’s own individual complexity and because often typical warning signs about worsening health manifested differently for their child.

I think having a nonverbal kid makes things really hard because all of the things that are like ‘Oh, they’ll let you know when they’re in failure because this will happen,’ none of those things existed for my son. (Parent 17)

Additionally, parents discussed the challenge of making decisions with so much uncertainty about how their child might benefit or be impacted by a particular intervention.

He’s still undiagnosed, we know it’s neurodegenerative, but we don’t know how slow or how fast. So when it comes to making decisions about his care, not knowing how his brain has changed. . . and just that whole not knowing of what makes sense, or what’s gonna happen to him. (Parent 12)

Theme 2: Our stresses and challenges

Parents described the variety of ways that their roles as parents of children with SNI sometimes felt stressful and draining. Many parents discussed how this related to their child’s extraordinary care coordination needs and the many sources of input required for making decisions.

Taking care of a child in her state is very stressful all on its own. I mean she has 12 different doctors . . . It’s very hard to keep everybody informed. (Parent 21)

For other parents, this stress was due to the social isolation and lonely experience of parenting a child with SNI. This aloneness stemmed from being the only one who really held their child’s full experience and the decisions that had previously been made for their child. This feeling of isolation sometimes extended beyond the hospital setting to include community and family members.

Most of my family and friends don’t understand what has happened to us, and I don’t think they could ever have. I couldn’t explain to them what we’ve been through. (Parent 1)

Many parents reflected that their frustrations and exhaustion were related to not feeling listened to or to not being heard in the hospital setting and during the process of decision-making for their child. Parents felt that this sometimes led to a cycle of setbacks for their child because the clinical team was unable to provide the individualized care that their child needed without the parent’s input.

There are lots of things that I don’t know how to do, but I know how to take care of my daughter . . . and I don’t know how to convince her clinicians that if I’m asking for something, to get them to actually consider what I’m asking [for] and to not just pooh-pooh me away. (Parent 16)

Parents also felt stress from the weight of responsibility of constantly making decisions for their child. This related to concerns about how the decisions they made would impact their child’s quality of life and/or their prognosis. Additionally, parents felt drained from experiences when they thought their child was going to die and survived – and also times when they had to think ahead about their child’s end-of-life.

I know how complex he is, and we don’t know much about the brain and how it works . . . I mean if you have cancer, in a way either something is gonna work [or] not gonna work. A kid can tell you if they’re sick and where it hurts, things like that. There’s no such thing for [my son]. There are a lot of unknowns, and he can live 30 years, or [be] gone tomorrow. You never know. (Parent 13)

My wife and I really, really try to live in reality every day, ‘cause every day is life and death with her. She’s that fragile. (Parent 14)

Finally, parents discussed the challenge of not having their individual needs met, not having the opportunity to process their emotions as parents, and/or not always being able to just simply be parents.

I met doctor[s] who called me “Super Dad.” . . . they thank me and they say, “Wow you’re such a great advocate for your daughter.” And that’s wonderful . . . but on the other hand it’s like I wish I didn’t have to be such a great advocate sometimes. I wish I didn’t have to do this, I wish I could just be dad. (Parent 1)

Theme 3: Our meaning and purpose

Despite the various challenges, many parents described the ways they transformed in response to their child’s changing needs, their roles in decision-making, and as parents of children with SNI.

We do the best job that we can with what we have available to us. We don’t have a ton of money for a handicap-accessible van . . . I work two jobs to barely make ends meet and my husband works . . . I don’t have the resources to just do things, and everything has to be very planned out. (Parent 25)

Parents also discussed how they had adapted to their child’s life-limiting illness. In many ways, parents described providing a foundation for their child to encompass their full care needs.

I’ve built my life around her . . . I have happily given so much stuff up to stay with her. I barely do anything except play with my baby. (Parent 14)

With all these experiences, many parents described finding their own personal growth. A few parents shared that this growth would continue for them, even after their child’s death.

My experiences in hospitals empowered me to become a whole new person . . . I have spent so much time in hospitals it’s not even funny, and I’ve dealt with a lot of really heavy stuff. Because [my daughter’s] condition is terminal, a lot of times people just want to go to that sad place, and I’m a very happy person. So the relationship that I have built and the culture of communication and quality of life that we’ve really kept, it’s affected my whole life. Even after [my daughter] is gone. (Parents 11)

Discussion

This qualitative study of 25 parents revealed 3 major themes related to parents’ experience of decision-making for children with SNI: our roles and actions, our stresses and challenges, and our meaning and purpose. Despite the focus of this study being on parental decision-making, participants described how their child’s care impacted every aspect of their lives. Although parents centered on their role as the expert and advocate for their child’s health and well-being, many experienced isolation and expressed feeling unheard in the hospital setting.

Many parents of children with SNI provide the backbone of care, security and safety, and support for their child.¹³ They also advocate for their child’s needs – often as their voice.^14–16 Parents pick up the pieces when the healthcare system is unable to and harness resources to ensure that their child gets the care that they need and deserve.¹⁷ Many parents in this study echoed these challenges and described constantly facing decisions for their child that impacted their entire family. This is consistent with other studies where parents have shared the variety of decisions that they continually experience related to their child’s illness – such as those about their child’s well-being, resource needs, quality of life, and/or end-of-life care.^18–20

Parents in this study also described how their child’s unique medical problems and needs left them feeling alone in their expertise of the “whole picture.” This finding is similar to other studies in which parents have discussed their role in holding all the pieces of information about their child given the numerous subspecialists, locations of care, and services involved.^5,21 This expertise, coupled with a lack of a clear clinical partner to integrate medical information and navigate uncertainty, can leave parents feeling the weight of having the ultimate responsibility to unify complex information to make critical decisions for their child’s care. This is further complicated by the unknowns about how a decision will impact their child’s quality of life and longevity. As this study and others suggest, the weight of these decisions can result in parents feeling isolated or alone when no one else shares their perspective or can consider their child and family’s needs as holistically.²²

Because parents are so essential to meeting the needs of children with SNI, it is also imperative to understand and address parents’ unmet needs – particularly around experiences of exhaustion, isolation, frustration, vigilance, and worry.²³ As participants in this study shared, the intensity of parenting efforts among parents of children with SNI can make it difficult to find the time and the emotional bandwidth to process experiences and reflect on parents’ own personal needs. In addition, with their child’s recurrent hospitalizations, many parents can also experience the harmful impact of repeated stressful experiences, making psychosocial support for parents essential.¹⁴ To improve care for children with SNI, these parental needs must be better attended to and parent supports strengthened. Recognizing and addressing intense emotional experiences can improve a parents’ ability to organize and process cognitive information, experiences that can otherwise interfere with high-stakes decision-making in the hospital.²⁴

Our study has several limitations. It was a single-center study with a small sample size typical of qualitative studies. Parents were predominantly white, English-speaking mothers. Further studies are needed to explore these issues among more diverse populations including those from various languages, cultures, and community perspectives – as parental decision-making needs and processes may vary. Although parents were given the time they needed to answer interview questions fully, some of their perspectives may have been missed as they may have felt more or less comfortable sharing certain aspects of their experiences. However, having interviewers who were separate from clinical care likely mitigated these concerns. Additionally, over the 7-month study period there were many more eligible parents than we were able to approach, further limiting the generalizability of our study. Our results may also have been limited by only hearing from parents who were well enough to agree to participate during their child’s hospitalization. Since parents only included those who had children who were hospitalized, this also limited our ability to explore perspectives of parents in different care settings. Additionally, given the overlap among themes in this study, thematic groupings reflect the deliberations of the study team and may not fully reflect the complexity of parental experiences. Despite these limitations, this study furthers our understanding of parent experiences among this important population.

In terms of next steps, parents in this study often reported additional stress from feeling that their voices were not heard in the hospital setting. Many parents shared that they felt their opinions were undervalued and that this lack of a voice not only exacerbated setbacks for their child, but also increased frustrations and challenges for them as parents. Instead, processes are needed that both empower parents as the expert in their child’s care and that facilitate ways of hearing parent perspectives within the healthcare system. To do this, communication tools that invite parent advocacy about their child’s needs as well as those that foster inclusion of parent priorities in decision-making may be beneficial. Acknowledgment by clinicians of parents’ expansive abilities to do things they may have never thought possible may also bolster parents’ willingness to share their expertise.^25,26

Conclusions

To improve care for children with SNI, we explored the process of decision-making experiences of their parents. We found that parents have many important roles in the care of children with SNI which can sometimes result in parents feeling stressed, despite their ability to rise to these challenges. As parents navigate these crucial roles, we must now determine how best to provide the support parents need to advocate fully, integrate complex information, and care for themselves while caring for their child.

Abbreviations:

SNI

severe neurological impairment