Parents’ Experiences and Information Needs in the Management of Their Child With Intellectual Developmental Disorders in Canadian Emergency Departments: A Qualitative Descriptive Study

Abstract

Children with intellectual developmental disorders (IDDs) are frequent users of emergency department (ED) services. Incorporating parents’ experiences and addressing information gaps is crucial to supporting healthcare utilization. This study examined the experiences and information needs of parents managing their child with an IDD in the ED. Semi-structured individual interviews were conducted with 10 parents; data was analyzed thematically. Results draw attention to the role of parents as key care coordinators and experts in their child's health, often advocating for the needs of their child. Facilitators to positive ED experiences were mutual respect and trust between parents and healthcare providers (HCPs), parental preparedness, and effective communication. Parents rely on each other and trusted sources of information when making decisions and seeking validation. Findings can aid researchers, HCP, families, and change-makers to gain insight into factors that drive parental expectations and care decisions within the ED. Findings can also be used to support the development of targeted knowledge translation strategies supporting both caregivers and HCPs in managing emergency healthcare of children with IDDs.

Introduction

Children with intellectual developmental disorders (IDDs) are typically defined as having conditions that can negatively affect the physical, intellectual and/or emotional trajectory of a child's development.^1,2 IDDs can be grouped by the body system that is affected, such as a nervous system, sensory system, metabolic or degenerative disorder. ² Many broad definitions also exist in the literature to describe IDDs, such as intellectual disability, global developmental delay, and neurodevelopmental disabilities.^3,4

Children with an IDD use both inpatient and emergency department (ED) care at approximately 1.8 times that of the general population. ⁵ Additionally, Lindgren et al (2021) found that these children were over 7 times more likely to need ED care for epilepsy/convulsions and behavioral disorders compared to the general population. ⁵ Using data from 9.1 million ED visits across New York State, Beverly et al (2021) compared ED use between children and adolescents with and without autism spectrum disorder (ASD). ⁶ Results showed that those with ASD had a higher likelihood of ED visits and a greater prevalence of co-occurring conditions such as ADHD, IDD, and epilepsy. ⁶

As a high intensity environment, the ED poses sensory, behavioral and communication challenges. ⁷ Communication challenges can worsen in stimulating environments, leading to aggression, hyperactivity, self-injury, sensory sensitivity, and escape behaviors in children with IDDs.^8–12 Crowded waiting rooms and long wait times continue to induce significant agitation and anxiety in individuals with an IDD.^13,14

The experiences of caring for children with an IDD in the ED are recognized as complex and challenging for the patients, their caregivers, and healthcare providers (HCPs).^7,15–17 Parents have identified negative experiences when seeking emergency care such as a lack of respect, anxiety, ¹⁸ and concerns of overmedication and diagnostic overshadowing. ¹⁹ Negative hospital experiences have also been reported due to HCPs lack of expertise and knowledge specific to managing children with an IDD as well as the unmet support needs of parents of a child with an IDD.^19–21 Effective multidisciplinary programs address care disparities for individuals with IDDs, emphasizing the importance of caregiver experiences and information needs for quality patient management. ²²

Persistent challenges in emergency healthcare and high utilization rates among children with IDDs highlight the importance of addressing the information needs and experiences of their parents and caregivers. Gaining a deeper understanding of how parents navigate the ED experience is essential. This qualitative study presents findings from interviews that explore the experiences and information needs of parents seeking ED care for children with IDDs.

Method

Study Design, Sample, and Setting

This exploratory study followed qualitative descriptive methodology. Using purposive sampling, participants across Canada were recruited between June 2023 and March 2024 via online support communities for families with children with IDD, posters in health clinics across [study city], and through social media platforms. This method allows for targeted recruitment of individuals with specific experiences. Purposive sampling does not support comparisons of patient populations, but is intentionally used to gain deep understandings of lived experiences. Eligible participants met the following criteria: (1) parent of a child under 18 years with an IDD, (2) reside in Canada, (3) sought care for their child with an IDD at a Canadian ED in the past 12 months, and (4) able to speak, read, and write English. Potential participants were provided a letter outlining the purpose of the study, screened for eligibility, and invited for an interview. Ethics approval was obtained from the [authors’ host institution].

Data Collection

An interview guide (Appendix A) was developed by the authors to explore parent experiences and information needs while seeking care for their child with an IDD in the ED. Semi-structured interviews^23–25 were conducted over Zoom™ by a member of the research team. The team is composed of nursing and public health researchers with experience in child health, knowledge translation, and qualitative methodologies. The interviewer, a registered nurse and researcher, has over 35 years of professional experience in the Canadian pediatric healthcare system. All team members actively engaged in debriefings and reflexivity to ensure their professional lens did not overshadow the lived experiences emerging from the data. Informed consent was obtained from each participant prior to starting the interview. Demographic data was self-reported by each participant. Interviews were recorded and transcribed verbatim by a professional transcriptionist. Data collection and analysis occurred concurrently until data saturation, the point at which no new themes or concepts were identified.^26,27

Data Analysis

Inductive experiential thematic analysis was used to identify themes directly from the data. This type of analysis emphasizes participants’ lived experiences and captures the richness of their personal stories to identify significant themes addressing the research question. ²⁸ A comprehensive audit trail and research team debriefings were used to maintain confirmability and dependability. NVivo™ v14 qualitative analysis software was used for data management and to facilitate the organization and coding of interview transcripts.

Clarke and Braun's (2017) 6-step approach to thematic analysis was used to guide the process. ²⁸ In phase 1, data immersion, potential themes were identified by reviewing the transcripts. In phase 2, coding, themes were discussed and a team member conducted open coding and organized codes into preliminary categories. In the third phase, generating initial themes, related categories were grouped into thematic headings. During phase 4, developing and reviewing themes, the team ensured themes aligned with the research question. Themes were then refined to reflect the parents’ overall narrative in phase 5 (refining, defining and naming themes). Finally, in phase 6, reporting, sample quotes were selected and theme names were finalized by all authors. Demographic data were analyzed using SPSS Statistics^© v.29.

Results

Thirty participants were recruited from across Canada of which 10 met eligibility and completed interviews. All participants (n = 10) were female and living with another supportive adult (Table 1). Almost all participants (n = 9) were between the ages of 31–50 years and had a post-secondary degree or higher education. Seven participants (70%) identified as white and 6 (60%) reported annual household incomes > CAD $150,000. Participants predominantly lived in the inner city (60%, n = 6) or suburb (20%, n = 2). Half of participants (50%, n = 5) had visited an ED 1–5 times with their child. Each participant had 1 child with an IDD, and almost all children (80%, n = 8) had more than 1 health condition and had been admitted to the hospital as a result of their IDD. Children were 13 years or younger and of the 10 children, 6 had Down syndrome, presenting with various co-morbidities: ADHD and anxiety; congenital heart disease (CHD), epilepsy, hyper-secretory asthma, and adrenal insufficiency; pulmonary hypertension and atrial septal defect; atrial septal defect, ventricular septal defect, and Crohn's disease; neurogenic bladder; and hypothyroidism. Among the other 4 children, diagnoses included ASD, Dravet syndrome, and XXY syndrome.

Table 1.

Demographic Characteristics of Parent Participants (n = 10).

Characteristic	Overall n (%)
Gender
Female	10 (100%)
Male	0 (0%)
Relationship to the child
Father	0 (0%)
Mother	10 (100%)
Age
31–40 years	4 (40%)
41–50 years	5 (50%)
51+	1 (10%)
Ethnicity
Asian	1 (10%)
South Asian	2 (20%)
White or Caucasian	7 (70%)
Marital status
Married/Partnered	10 (100%)
Gross annual household income
$50,000–$74,999	1 (10%)
$100,000–$149,999	1 (6%)
$150,000 and over	6 (60%)
Prefer not to answer	2 (20%)
Highest level of education
Post-secondary certificate/diploma	1 (10%)
Post-secondary degree	3 (30%)
Graduate degree	6 (60%)
Location
City	6 (60%)
Suburb	2 (20%)
Farm	1 (10%)
Country	1 (10%)
Relationship to the child that has been brought to the ED
Parent	10 (100%)
Number of children
1	2 (20%)
2	5 (50%)
3	1 (10%)
4	2 (20%)
Age of the child with [condition]
Less than 2 years	1 (10%)
5	2 (20%)
6	2 (20%)
7	1 (10%)
9	2 (20%)
12	1 (10%)
13	1 (10%)
Has other diagnosed health conditions
Yes	8 (80%)
No	2 (20%)
Number of times the child has visited the ED
1–5 times	5 (50%)
6+ times	4 (40%)
No response	1 (10%)
[Condition] has resulted in hospitalization
Yes	8 (80%)
No	2 (20%)
If yes, how many times? (n = 8)
1–5 times	5 (62.5%)
6+	3 (37.5%)

Four key themes, each with multiple subthemes, emerged from the data (Figure 1). Themes are described below with examples of supporting quotes in Table 2.

Figure 1.

Qualitative themes and subthemes.

Table 2.

Thematic Analysis and Supporting Quotes.

Themes and subthemes	Examples of supporting quotes
Parents are key care coordinators and experts in their child's health
Decision-making: when to seek care in the ED	• “I understand the importance of not taking kids in for every little thing, but my inclination as a parent [is we] aren’t inclined to do that. They’re inclined to go to the ED when they need the ED […] if you feel like in your gut that your kid needs to go, go.” (002)
	• “She started getting, you know, got really sick again. It happened very quickly. And I could see, you know, I could see it going down the same path and just that she had nothing to fight it with […] we kind of knew too though like we knew, okay, well it's five am, we’re awake, she's not doing well. Instead of waiting, let's go now before it gets busy and it did get busier but going early was – like you kind of have to know how to navigate the system, right.” (005)
	• “Trust your gut if you feel like you need to go. Trust that you should be going even if they're not always rushed in.” (010)
Advocacy: the importance of parents advocating for the needs of their child	• “This is your child who has limited capacity to communicate themselves and the doctor and the nurses and everybody else [in the ED], they are experts, but you are the expert on your child and that has value.” (001)
	• “Bring your expectation that you might have to advocate a little bit. Again, respectfully.” (002)
	• “I go prepared to advocate for her [in the ED] […] I feel like I’ve grown as a person as well because now I know how to advocate for my daughter. But I often say that you shouldn’t have to advocate for this because this is basic care. And really you shouldn’t have to advocate for this.” (006)
	• “Don’t be afraid to advocate on your kids’ behalf. You know your kid best.” (007)
Accessing care: the impacts of positive and negative experiences shape parental decision-making related to seeking care in the ED	• “One of the great things about the pandemic - to be quite frank - for us, is that we've been able to access Telehealth, which has been great for us because we were always worried [about exposing our child to infection in the ED]. Like, we were masking before it was cool, right? You know, when she was a baby on the cusp of heart surgery, we masked.” (002)
	• “I wish that [HCPs] would know that they can present differently. That they – like no one ever told me anything about neurogenic bladders in Down syndrome until Dr (Name) told me about it. Nobody knew that. Like the ER doctor that saw him, you know, after the ultrasound and the urologist that saw us in (Town) just treated him like a kid and like, listen in the rest of his life, yeah, I want him to be treated like a kid.” (008)
	• “If my husband was also there, it would be easy, like one of us would be with the kid and one of us used to like explain to doctors and nurses. But if only one parent is there with the kid that is difficult…” (009)
Children with IDD present differently and have different thresholds than other children	• “His pain threshold is a little bit weird. He like scalded his arm with boiling water and had second degree burns and we had to do daily dressing changes on him, and he just held his arm out and I cleaned it and put his dressing and the Adaptic back on. He literally never said boo” (007)
	• “He had reactive airway disease that took him to the hospital a lot. And he would present really differently than a typical child. So, if the doctor or nurse didn't listen to me, then it got to be pretty critical of a situation.” (008)
	• “When she gets sick … and with these viruses for which there are not anti-virals, it's just a matter of letting it run its course. So that's kind of scary to know that … we know the pattern. Like, we know that when we take her, you know, when we see the glisten in her nose, we figure we have about four days before she's in the hospital. And she's in the hospital for a couple days often before she goes to the ICU. We just–like, this is a pattern we've seen over and over.” (002)
Parent experiences in the ED are shaped by prior healthcare encounters
Relationships with HCPs are shaped by mutual trust and respect.	• “They really took it seriously, and again, I appreciated that a lot” (002)
	• “Now, the nurse that did our admittance or the registration checked [Name] over and said. “We don’t know [Name]. You know [Name]. You tell us how you feel about how [Name] is” And I thought that's exactly what you need to know […] You know, what do I recognize as her mother, which I thought was so key because usually people see [Name] and think oh, she's fine because she always looks fine, even after having surgery.” (003)
	• “we also have to put our trust in people […] our experiences overall were very positive […] like people are doing the best that they can” (005)
	• “It's not just enough to say like hey you're the expert in your child. You need to actually respect that.” (006)
Parents highlighted the need to show themselves compassion and to be shown compassion by HCPs in the ED	• “I know they have a job to do but there was very little compassion for me and how I felt about what they were doing to my kid and they're not listening to my concerns […] I’m not saying he needs to be sedated because it's fun […] So maybe just like listen or if they're not ready to just listen and go with it, like ask some questions. You know, find out why I think we need that and what his response has been in the past.” (001)
	• “It's important to look after yourself, but like just do the best you can. You know what I mean. If that's getting a tea that day, then that's what it is.” (005)
	• “I actually told the doctor that like next time if you ever see a mom who's actually waiting here and its 3 am in the morning, I beg you not to tell them that this is progression of the disease when you couldn’t quite know about it.” (006)
	• “I just had this feeling all the time – that's probably where it started off - I’m not doing enough.” (007)
Parents described experiences of privilege and of discrimination in the ED	• “We feel very fortunate that we feel like we can advocate in that way and like I don’t know a lot of families that wouldn’t.” (002)
	• “I am very blessed because people do take me a little more seriously than other people unfortunately, because of my situation, but in many ways fortunately for me, but I understand that I’ve seen on the opposite side of medicine what, if you’re not taken seriously, happens, so you just unfortunately have to stick to your guns and push.” (003)
	• “I actually sent my husband in because I had a feeling that every time I was taking her in, I was not taken seriously, and I was considered like the hysterical mother […] I wonder whether I was not taken seriously because I was an immigrant, because I had an accent.” (006)
	• “It's most evident when there are white kids in the ED along with us. They look really flushed. They look really sick because they're pink in the face and, you know. Sometimes they're crying or whatever it is. But my daughter is brown skinned. She's not going to looked flushed in the face or, you know, any – look like anywhere close to sick as they look, but sometimes I feel like that's the same skin with which they sort of judge how well she's doing.” (006)
	• “There's a lot going on here [in the ED]. White well-educated women who sometimes lets it slip that “I’m a pediatric nurse also and I’m not coming into this with nothing” and maybe that helps. It shouldn’t.” (007)
Treatment in the ED can be traumatic to the parent and child	• “[…] like we have eight people in the room. That's very triggering for him. Do we need eight people in the room? Sometimes we do, but you know, it's overwhelming.” (001)
	• “So, our child knows now enough about doctors and hospitals that they terrify her. […] she kind of hyperventilates when she's there […] she's terrified.” (002)
	• “He has a hard time to take the medicine so I need the help […] I think two nurses are holding him and then plus me and then like, yeah, I find that he gets really scared. […] it's really a battle that we need lots of people to hold him.” (004)
	• “[The nurse said] we want this to be as positive of an experience as possible for your son. We don’t want him to have any like, in his head, relationship with trauma around any of this. That probably wasn't the word that she used, but that's basically what she was getting at. […] she was probably the best thing that ever happened for me in terms of understanding how things have evolved since when I worked there [as a nurse]. But also, the importance of not making this traumatic for kids and that it doesn't actually have to be.” (007)
	• “I was in tears, and I said, (Name), they're gonna kill my kid up here. Like, something is wrong. They're not listening, they're gonna kill him. I need you to tell Dr (Name) what's going on. So, I remember going home and laying down because I was like I just need to think. I need to think about what our next move is. And so, I was laying down thinking, okay, we're gonna have to drive to (City) because I don't believe him. I mean, like this just doesn't feel right. And all of a sudden Dr (Name) calls me on the phone. He called me himself and he is like what's going on. And I told him everything. And he is like, this is very bad. You need to catheterize him every three hours. You are coming to (City). And so, he got us to (City). He did all the tests. He diagnosed the neurogenic bladder. And yeah, here we are.” (008)
Positive ED experiences are influenced by parental preparedness, ED processes, and effective communication
Preparedness: mental and physical preparation for an ED visit	• “I would say bring all the things you need for a couple of days. Like bring the food. Bring the meds. Bring the change of clothes. Bring any comfort items. Like basically I just move in even if it's only for a couple of hours.” (001)
	• “[I] keep actually a little note, like a cue card in [Name]'s little, she's got a bag that's her diaper bag with her medical stuff, and the cue card says all of her diagnosis, surgery dates, and anything that she's had as far as infections” (003)
	• “No one wants to be in the hospital in the first place, but sometimes it's easier – like not resignation but resigning yourself to, okay, this is what we’re doing right now. This is what's within my control. These are things I can do to help, right. I could be my child's advocate. I can put their favourite show on or can help keep it quiet in the room by asking the nurse for what we need, you know. Making sure they're getting the pain medication they need. Not just trusting that other people will do everything. Are there warm blankets you could ask for? Are there, you know, do you need a puke bag or a couple extras or some wet wipes? Like they might not think to bring you that stuff, but you can ask for it.” (005)
ED processes: experiences in triage and waiting rooms	• “They’ve been very responsive to us [in the ED] and really took into account our little girl's sort of particular circumstances which was great. We really felt like they paid attention there. And I think it was function of her being there so often.” (002)
	• “So, one of the great things […] is that when she was first diagnosed with this respiratory virus and, you know, they got to see this pattern of her coming in [to the ED] and being already really sick, already being, like, ready to be whisked away to the ICU, because it happened so quickly that she goes from being okay to just really not being okay. And so, one of the things they implemented for us, which was wonderful, it's a godsend, is they basically made a note in the system that we don't wait. Like, we just … we don't have to wait in the germy old waiting room, and we don't have to wait to be seen. That was expedited, which was a great thing for us.” (002)
	• “I remember the nurse saying, you look really concerned. And I said, yeah, something's really wrong. And she got him in right away and like his oxygen was like super low, but he didn't present that way. And if she hadn't listened to me then I don't know if I ever would've gotten him out of triage.” (008)
Communication: managing expectations and improving trust	• “I find a lot of people, even at the hospital, kind of talk over him. Like he's eleven. He knows what you're saying, and he might not respond in a typical way but he's still fully aware of everything that you're saying to him or about him.” (001)
	• “My kid's not particularly verbal, and so we often kind of have to guess what's she's saying, which makes it hard for healthcare providers, right, because we kind of can sense what she's thinking and feeling about stuff. But really, it's kind of lost to them.” (002)
	• “We’re always very honest with her and open with her about like this is what you can expect. People need to know what to expect.” (005)
	• “They don't communicate with kids, I think. Like they just if they had to deal with the cleaning nose or mucus, then they start right away. And some people, like some nurses, they are harsh on starting up with the – means like they don't really think about the kids. Right away they start, and they do activities on the kids, like means start the things. But some nurses are not like that. They explain everything to kid, what they're going to do, and deal gently with them. So I experienced both kind of people.” (009)
Parental information needs change over time
Parents rely on each other and other trusted sources of information	• “I wasn’t even told of any support that was available myself until I contacted the NICU and advocated. Like what's the deal. What's the plan. You know, who sees [Child] after this. And nobody's told. So, if you’re not told and you don’t have the information, and it would be lovely if somebody prepared something that was generic for if you needed information on where to go for help. Who to talk to to get your services. That would be so beneficial.” (003)
	• “I started like googling and reading up research articles and just getting my hands on what information was out there to educate myself. […] It's always been like getting information from other parents or, yeah, just like you get some information from the social worker. Some information from your pediatrician, some – it's very segregated I would say. […] definitely having that online community [of parents] has been the most helpful in terms of figuring out resources, where to go, who to go, and things like that.” (006)
	• “I just reach out and ask people like what have other people done in similar situations in other hospitals or things like that just so that I have an idea that I’m not mistaken in my thinking […] even in the community sometimes when they're going into the [ED], like when someone in the group and they're like hey, we’re headed to the [ED] and, you know, she's seizing or he's seizing and what do we do. And literally there's a list that comes from like many people that say, ask for this, ask for that.” (006)
	• “I sent videos to my friend who is a nurse practitioner. She's like, “do not bring that baby home” […] we didn't know to argue aside from my friends saying don't do it.” (010)
Information needs are impacted by experiences	• “I’ve seen some campaigns out of the UK around sepsis awareness in kids. I think that would be a great thing to have here, you know. […] I know that kids with Down syndrome, and I don’t know if there's any science around this, but I know that they do tend to suffer sepsis more often. I had an ICU doctor say once that his feeling was that absolutely it was the case, but he didn’t know of any studies that showed that. But they see a lot of kids with sepsis.” (002)
	• “I think 10 years ago though, when I was a new mom to him it was like you're just the mom for a lot of doctors, and now I feel like that's changing because I don't get that anymore.” (008)
	• “So, I took him the next day to be catheterized. At the time they were like, let's do it two times a day. And went there [to the ED]. And I said to the nurse, can't I just do this myself? And he was like, sure, I'll teach you how. […] And so, he taught me how to catheterize him, gave me a whole bag of catheters and all the stuff I needed and sent me home.” (008)
	• “A lot of the time [I’m] just looking for validation that I made the right choice taking him in.” (010)

Parents Are Key Coordinators and Experts in Their Child's Health

Parents are essential partners in managing their child's health, particularly when dealing with frequent ED visits and complex health needs due to underlying causes and increased susceptibility to other conditions, which frequently occur alongside IDD. When deciding when to seek care in the ED, parents trusted their instincts, previous experiences, and knowledge of their child's symptom trajectory. Recognizing their child's symptoms and illness patterns is vital for effective crisis management. Parents described the significance of early intervention and efficient navigation of the healthcare system. Once in the ED, parents felt the need to advocate for the needs of their child, particularly for children who struggle to communicate effectively. They emphasized the need for HCPs to listen to parental knowledge related to their child and their child's atypical presentations, such as high pain tolerance levels. Parents also highlighted the challenges of single-parent situations, noting that having both parents present can improve communication with HCPs.

Parent Experiences in the ED Are Shaped by Prior Healthcare Encounters

Parents’ experiences in the ED are heavily influenced by their past interactions with healthcare. Building trust and respect with HCPs is essential; parents valued HCPs who genuinely listened to their concerns and recognized their expertise regarding their child's health. In turn, parents grew to trust HCPs and respect informed decision-making. Parents described feeling a lack of empathy by HCPs for parental emotional distress, and emphasized the importance of both self-compassion and receiving compassion from HCPs. Notably, experiences of privilege and discrimination were reported. Some parents felt they were taken more seriously due to their background, while others faced biases related to their ethnicity or immigrant status. Other traumatic experiences during ED visits included restraints used on children and inattention to their child's needs resulting in concerns for their child's health and safety.

Positive ED Experiences Are Influenced by Parental Preparedness, ED Processes, and Effective Communication

Positive experiences in the ED rely on parental preparedness, efficient processes, and effective communication. Parents proactively prepared for ED visits by maintaining detailed medical records and packing necessary items (eg medications, changes of clothes, tablets and chargers). Effective ED processes, including responsive triage and streamlined care, helped demonstrate consideration for the individual needs of children with IDD. Experiences were discussed positively when parents felt HCPs paid attention to their child's unique needs and when their child was seen promptly. Crucial to positive experiences was effective communication: when information, ideas, or feelings are conveyed in a way that allows the recipient to fully understand the intended message. Parents felt this occurred when HCPs actively listened to concerns, explained procedures to children at their level of understanding, and helped manage parent expectations. In contrast, negative experiences often stemmed from feeling dismissed or not taken seriously by HCPs, which led to a need for constant advocacy for their child's basic needs. These experiences were sometimes compounded by feelings of discrimination, lack of compassion, and the emotional trauma of seeing their child in distress.

Parental Information Needs Change Over Time

As parents become more experienced with the ED and their child's IDD, their information needs change. Parents faced challenges finding adequate support and information, necessitating them to learn to advocate for their child and independently seek resources. Parents often sought guidance from each other and trusted sources as issues arose. Online communities and fellow parents were described as invaluable sources, aiding in healthcare navigation and validating decision-making. Past experiences significantly shaped the type of information needed, with parents learning from previous healthcare encounters to trust their instincts when making decisions, and gaining an understanding of the supports available. In 1 example, a participant, frustrated by the lack of medical advice that missed informing them of a crucial Down syndrome-specific condition (neurogenic bladder), sought out expert, targeted information regarding the unique health needs of their child with Down syndrome. Over time, parents gained confidence and knowledge, often assuming greater responsibilities in their child's care, including learning medical procedures such as urinary catheterization and central line care.

Discussion

Parents’ experiences when seeking emergency care for their child with an IDD reveal expectations for care and highlight areas for improvement. As confirmed by existing research,^7,29 key to a positive experience is the acknowledgement of parental expertise, along with dignity, respect, and collaboration from HCPs. Despite consistent research highlighting these needs, including findings dating back to 2016, there remains a significant gap between evidence and practice, with limited advancement toward meeting the unique challenges faced by these families. ⁷

Parents are essential partners in their child's health, serving as skilled advocates, system navigators, and providers of essential information related to their child's unique needs. Participants shared that their expertise and advocacy were crucial to positive outcomes in the ED. Experiences were deeply shaped by past healthcare interactions, trusting relationships, compassion, and the potential impact of trauma and discrimination. Participants felt that effective care for children with an IDD requires parental expertise to be acknowledged and valued. While the ED is an acute care environment, findings underscore a gap between parental expectations for comprehensive, person-centered care and the practical limitations of emergency medicine. Person-centered care, characterized by compassion and understanding, is vital for building trust and ensuring dignified, personalized care, particularly for children with IDDs. ¹⁷

Effective communication collectively fostered positive and less stressful ED experiences for parents and children. Parents’ urged HCPs to actively listen, individualize care, and educate themselves on the unique symptom presentations of children with IDDs and children from ethnically diverse backgrounds. One parent's statement illustrates how a lack of validation and empathy in communication can be traumatic: “I actually told the doctor that like next time if you ever see a mom who's actually waiting here and its 3 am in the morning, I beg you not to tell them that this is progression of the disease when you couldn’t quite know about it.” (006).

Positive ED experiences were further shaped by parental preparedness through mental and physical readiness for the visit. As 1 participant stated, “I go prepared to advocate for her […] that itself takes so much of energy when you have to care for a child with complex needs.” Similar to other research, parents of children with ASD advocate for proactive preparation including bringing distractions. ⁷ Prolonged wait times and a lack of preparedness can significantly contribute to parental stress and negative experiences ²⁹ which can create barriers to future care and lead to delays in seeking necessary medical attention.^30,31

Parent's information needs are dynamic and evolve with their experience. Families desire but often lack consistent information about ED services. As parents develop specialized health management skills, they desire earlier access to relevant information and greatly value peer support. ³² As parents gain knowledge of their child's needs and navigate various healthcare settings, they become more effective in managing their child's care. To enhance the ED experience, HCPs must adapt communication and support to foster informed parental involvement in healthcare decisions. ³³

Study findings highlight persistent inequalities and challenges in how parents experience various aspects of healthcare. Although not a focus of this study, research has demonstrated that parental health literacy also impacts the information needs of parents and their management of children with an IDD. ³² Low caregiver health literacy, affects nearly half of those in Canadian pediatric EDs, increases the odds of non-urgent ED visits by 1.5 times. ³⁴ Challenges faced by parents include navigating the ED, accessing resources for informed decision-making, and traumatic experiences in the ED. Addressing varying health literacy levels is crucial and requires implementing strategies such as universal health literacy precautions, language accommodations, interactive education, and easily accessible materials. ³⁵

In this study, findings highlight the need for systemic changes to improve care for children with an IDD. Parents urge HCPs to actively listen, address the individual child's needs, and educate themselves on variations in symptom presentation across children with an IDD and children from ethnically diverse backgrounds. As experts on their children's needs, behaviors, and triggers, parents provide valuable insight to shape effective communication and care strategies.^14,36 Positive experiences are tied to respect for parental knowledge, clear communication and proactive preparation.^7,17,29,37

Past improvements in the ED environment including management approaches such as sensory equipment kits and clinical pathways show a path forward. ²⁹ Pediatric EDs, with their specialized staff and child-centered environments, are better positioned to provide a more positive and tailored experience for these children and families. They can provide tailored care for children with intellectual disabilities through specifically trained staff and family-centered practices, leading to higher parental trust and better communication compared to general EDs. ³⁸ By prioritizing parental preparedness, optimizing ED processes and their management of complex concomitant conditions, and addressing evolving information needs, care quality can be enhanced and negative experiences for parents, children, and HCPs can be limited.

Limitations

True to qualitative inquiry, the 10 participants were purposively sampled with data collection and analysis occurring iteratively. It is important to note that the aim of qualitative research is not generalizability, rather it is transferability, which is achieved through providing rich, contextualized understanding and allowing the reader to determine if the findings apply to their own context. While a sample size of 10 may be viewed as a limitation in quantitative studies, it is not a limitation in this study as data saturation was achieved.

This study did not aim to investigate whether experiences differed between pediatric and general ED settings, nor did it evaluate how the age of the child or reason for seeking ED care impacted parent experiences. Further research specifically focused on comparisons of these experiences would be valuable to inform practice. There was no evaluation of how the age of the child or the reason for seeking ED care impacted parent experiences and information needs. Future research could differentiate findings based upon the type of ED a child attends, reasons for presenting, sociodemographic characteristics, and length of stay as these contexts could provide additional insights that would benefit health systems and practitioners to support steps in addressing healthcare disparities for children with IDDs. Lastly, while the experiential thematic analysis relies on subjective interpretation, it effectively provided an in-depth understanding of participants’ experiences.

Conclusion

This study reinforces existing literature and offers preliminary insight into the complex experiences and information needs of parents with children with an IDD seeking care in the ED. Findings provide rich, detailed insights and understandings of self-reported experiences, perceptions, and information needs and support the importance of understanding drivers of parents’ expectations and decisions in ED. Findings also highlight that parents of children with IDDs often experience disappointment and frustration with ED care practices and the inadequacy of resources to support their child. This calls attention to the vital need for additional supports and continued collaboration between HCPs and families to improve the quality of patient- and family-centered care for children with IDDs in the ED. While limited in generalizability, findings from this study can aid researchers, HCPs, families, and change-makers in gaining insight into factors driving parental expectations and care decisions within the ED, and can be used to inform the development of future research and targeted knowledge translation strategies supporting both caregivers and providers in managing the care of children with IDDs.