Emergency department (ED) care processes and environments impose unique challenges for children with autism spectrum disorder (ASD). The implementation of patient- and family-centered care (PFCC) emerges as a priority for optimizing ED care. In this article, as part of a larger study, we explore PFCC in the context of ASD. Our aims were to examine how elements of PFCC were experienced and applied relative to ED care for children with ASD.
Qualitative interviews were conducted with parents and ED service providers, drawing on a grounded theory approach. Interviews were audio recorded, transcribed verbatim, and analyzed by using established constant comparison methods. Data were reviewed to appraise the reported presence or absence of PFCC components.
Fifty-three stakeholders (31 parents of children with ASD and 22 ED service providers) participated in interviews. Results revealed the value of PFCC in autism-based ED care. Helpful attributes of care were a person-centered approach, staff knowledge about ASD, consultation with parents, and a child-focused environment. Conversely, a lack of staff knowledge and/or experience in ASD, inattention to parent expertise, insufficient communication, insufficient family orientation to the ED, an inaccessible environment, insufficient support, a lack of resources, and system rigidities were identified to impede the experience of care.
Findings amplify PFCC as integral to effectively serving children with ASD and their families in the ED. Resources that specifically nurture PFCC emerge as practice and program priorities.
Previous studies indicate that emergency department (ED) processes and environments lead to challenges in care for children with autism spectrum disorder, their parents, and their health service providers. Patient- and family-centered care (PFCC) has the potential to address these challenges.
We offer perspectives of PFCC relative to a population with autism spectrum disorder in the ED and examine care that is based on PFCC. We illuminate staff and procedural elements that impact family experience and offer recommendations for advancing PFCC.
Patient care and workflow are practice concerns in the emergency department (ED). In its aim of optimizing patient and family experience, patient- and family-centered care (PFCC)1 reflects (1) dignity and respect (listening to families and incorporating their values, knowledge, and beliefs in care), (2) participation (families are encouraged to participate in care and decision-making to the level they choose), (3) collaboration (families are involved in care delivery, institutional policy, and program development), and (4) information sharing (timely, complete, and accurate information shared with families).2 Practical suggestions to promote PFCC include the inclusion of family perspectives, resources to promote comfort (eg, child-life specialists), coordination and exchange of information, interpretation services, customized discharge planning, space that accommodates family members (including areas of low environmental stimulation), family input on policies and procedures, and active training and modeling of PFCC for staff members.1,3–5 In this initiative, we examined PFCC relative to children with autism spectrum disorder (ASD) in the ED.
Experiences of Children With ASD in the ED
A recent review of the literature revealed limited information about ED use by children with ASD.6 The review indicated that youth with ASD are more likely than typically developing youth to attend the ED and are more likely to be admitted for behavioral and psychiatric issues.6 A study on parent satisfaction with ED care for children with ASD revealed that satisfaction was related to staff communication and interpersonal skills, including communication with and between staff and communication between staff and the child with ASD.7
In previous work by this research team,8–11 families of a child with ASD and health care providers reported a range of care experiences in the ED. Amid variation in perspectives about care, challenges included a lack of staff knowledge about ASD, lengthy wait times, insufficient engagement of parents in case planning, and heightened sensory concerns for the child as a result of ED environments or care processes. Our aim for this article is to specifically appraise care in the ED, as described by participants in open-ended interviews, relative to the specific tenets of PFCC. Accordingly, we examine how PFCC elements are variably expressed in depictions of ED care for children with ASD, as conveyed by families (receiving this care) and their health care providers. In the article, we address the following research question: “How are tenets of PFCC reportedly demonstrated (or not demonstrated) in the care of children with ASD in the ED?”
With this study, we build on an earlier qualitative inquiry that drew on a grounded theory approach.12 Grounded theory elicits the perspectives of participants (in this case, parents of a child with ASD and ED service providers) in determining theoretical processes and core constructs related to the phenomenon in question. Recruitment had occurred in 2 large Canadian tertiary-level pediatric EDs. Parents of a child with ASD were eligible to participate in an interview about their care experiences and were invited to nominate a familiar ED-based health care provider engaged in their care for a separate interview about the provision of care to the child (as well as other children with ASD) in the ED. Interviews were guided by a semistructured interview schedule, with open-ended questions, and were conducted from 2012 to 2014.
Interviews were audio recorded, transcribed verbatim, and initially subjected to line-by-line coding, categorization of codes, concept saturation, and theme generation. To organize and support the analysis, NVivo 10 qualitative data management and analysis software13 was used. After the data analysis and publication of emergent themes in the initial study,8–11 we reanalyzed transcripts against specific established principles of PFCC. This article is distinct from earlier publications reflecting this research in its specific and targeted application of findings, through the prism of PFCC, based on a secondary review of the initial qualitative data set. The theoretical notion of PFCC (and its specific properties) thus directly informed and guided this analysis. A constant comparison analytic process of data coding and categorization was used. In terms of ethical processes, informed consent was received from all participants. Participant identity has been concealed, with identifying features in the data removed. Institutional ethics review board approval was granted before study commencement.
A total of 31 parents (24 mothers and 7 fathers) participated in interviews, representing 29 families and 30 children with ASD. Beyond family participants, 22 ED service providers were engaged in interviews, consisting of 10 physicians and 12 nurses. All participating families received care in 1 of the 2 participating EDs (located in large urban tertiary care pediatric hospitals in Canada). Both EDs offered a range of support services, including mental health, social work, and child-life services; however, the availability of these services varied throughout the week. Each site reported partnerships between health care providers, mental health services, and security services (if necessary) to manage significant behavioral emergencies. Participant demographic information is outlined in Table 1.
|Parents (n = 31)|
|Age of child(ren) with ASD, y, average (range)||9.9 (3–17)|
|Parent age, y, average (range)||42.7 (31–51)|
|ED health care providers (n = 22)|
|Time in position, y|
|Parents (n = 31)|
|Age of child(ren) with ASD, y, average (range)||9.9 (3–17)|
|Parent age, y, average (range)||42.7 (31–51)|
|ED health care providers (n = 22)|
|Time in position, y|
Participants described ED care in ways that were both reflective of and incongruent with PFCC. Demonstrated elements of PFCC were (1) dignity and respect, (2) information sharing, and (3) authentic participation and collaboration. The application of these notions, as they were identified in interview data, is presented below.
Dignity and Respect
The facilitation of dignity and respect in care delivery was described to entail a person-centered approach and staff knowledge about ASD. Parents stated that when case knowledge and/or background information about their child, including ASD-relevant information, was incorporated in ED practice and when the patient and family were listened to, effective personalized care was bolstered. In addition, a welcoming approach to the child was identified by families as helpful and gratifying. For example, a mother shared, “When we left, we were like, ‘that doctor’s amazing.’ I think [it was] how he spoke to [the child].… He really…met the kid where he was at.”
Participants reported that staff knowledge, training, and experience in ASD and attention to parent expertise were valued and beneficial to care. Some parents described the interactions with staff who had a previous knowledge of ASD, which they felt had improved their child’s care experience. In an instance in which a staff member had less experience with ASD, the parent appreciatively commented, “[The] doctor told me that she will send somebody who has experience in autism.” This openness to considering the child’s ASD-specific care needs was appreciated. Several ED staff felt that previous training and experience in ASD increased their attunement to children’s unique care needs: “If people have been trained or more exposed to autistic patients, I think that definitely helps.”
Variable levels of ED staff knowledge and experience in ASD were described. Several reportedly had no or little training in ASD. A staff member noted, “People don’t know how to deal with these kids [with ASD], period.” Another commented about a lack of ED-based ASD resources and standards: “We don’t have a standard of care for patients with autism, so there isn’t really a standard practice.” Several staff felt unprepared to provide ASD-informed care; however, others countered that such practice can be developed with experience, as illustrated by a staff member’s comment, “I don’t think it’s so much training as experience.”
Finally, listening to parents and valuing their input and expertise was identified as important. As an example, some parents stated that health care providers demonstrated reticence or made erroneous assumptions about their child with ASD:
In general, with some doctors, I’d like to say that they seem pretty hesitant to examine the child.… I have had doctors say, “Oh she probably won’t let me look in her throat or look in her eyes, or her ears, or whatever.” And then I say, “Yes she will.” And you almost have to force them to want to do it.”
Additionally, desired services were sometimes not initially offered to families:
So, I was asking [the doctor], “Is it possible to get maybe…a social worker or something more involved, you know, maybe I could talk to someone since I’m here at the hospital? [The child] is in crisis, would that be possible?” [The doctor] was like, “No. I don’t think that that’s necessary.”
Information sharing, as a tenet of PFCC, was demonstrated by health care providers who offered communication clarity and by families being oriented to the ED. In demonstrating communication clarity, ED practitioners reported that communicating with some children with ASD can be difficult both for the child and the health care provider. A health care provider conveyed both variation and personal challenge, stating, “I think it really depends on the child, if they’re on the milder spectrum, they can be fine…but other ones I’ve had who are obviously more autistic and don’t communicate well, I think it’s a very difficult experience for them.” She added, “You need to help them, you want to help them, but how do you do that when…they’re just challenging you?” Reflecting on her work with children with ASD, a staff reflected that “communication is the biggest challenge.”
Likely similar to peers with neurotypical children, parents of a child with ASD reported their desire for more frequent updates regarding their child’s ED care. However, this need sometimes was intensified by challenges associated with ASD and varying stresses imposed by being in the ED. Staff noted that multiple care providers and convoluted care needs and practices could impede communication clarity: “[The patient] comes in, and you have a nurse and you have a doc, maybe a resident, and all these different people are trying to poke at this child, and that’s difficult.” Another added, “I feel like that’s just not fair to the family, to the parent, who’s left running and being told to relay information from doctor to doctor.”
As another demonstration of information sharing, in contributing to PFCC, participants conveyed the importance of orienting families to the ED. Access to needed information regarding services or amenities related to the care process or environment was desired by families yet variably offered. One parent conveyed the following example of a practical informational gap:
I went to the snack drawer and got [my child] Cheerios. I knew where it was, they had told me before.…I think they should tell people that when they come in.…There was another lady, she had a son or daughter who screamed…for an hour. And I felt so bad.… I was going to go ask her if she wanted something to drink or eat because I knew where the snacks were, and then I was like maybe I shouldn’t do that…I don’t want to get in trouble.
Participation and Collaboration
Examples of participation and collaboration in care, a tenet of PFCC, were identified as consultation with parents, a child-focused environment, environmental navigation, and ED design. In demonstrating authentic consultation with parents, families described positive experiences of feeling respected by ED staff for their knowledge about their child and suggestions for optimizing care. One parent reported the following example:
Some people…really listened. And I said, “Okay, if we’re going to do blood work,” and they would listen to me, I said, “This is how…” you know you’ve done it enough times, you say, “This is how it needs to be done. You’re going to do this, you’re going to do this. I’m going to hold this arm. Somebody’s going to hold the feet.”
Regarding the potential use of restraints during medical procedures, a mother gratefully conveyed ED receptivity to her advice: “The anesthesiologist said, ‘What are we going to do, Mom?’ And I said, ‘We’re just going to hold him and get the mask on his face, that’s what we’re doing.’ So at that point, I think everybody felt more comfortable restraining him with me.”
A parent conveyed the critical role of listening to parents: “[Staff] were very happy to have [my] input because otherwise…they would have made [my son] upset and they wouldn’t have gotten what they needed to get from him.” A staff member echoed this sentiment, noting that failure to engage with parents was “a guarantee we’re going to make mistakes.” Conversely, participants relayed instances in which parents’ input was insufficiently addressed or even dismissed. One mother described her experience of feeling dismissed:
I tell the [nurse]…we actually have to get the doctor, and she’s like, “Okay…” So I’ve told the people this and then I wait, and they try [the procedure anyway], and then [my son] screams, and it’s all terrible…, and [they say], “You know what? We’re just going to have to get the doctor.”
Further exemplifying the role of partnership with the child as a tenet of PFCC, parents and children valued a child-focused environment. Various aspects of the ED environment were identified to improve the child’s experience, including an accessible television (distraction), a play area, a calming fish tank in the waiting room, doors on patient rooms that minimize noise, and volunteers who provide the child with activities. Describing the positive impacts of these supports, a parent reflected, “After the couple of hours…of him reading books and us playing [a game] and him playing on the video games, he was comfortable in that environment.… He was allowing things to progress that needed to be done to him.”
ED staff similarly reported that child-oriented features of pediatric EDs were helpful for the child and family: “That’s not only because the space is more child friendly and safer, but also because the staff have particular training in pediatrics and would also have more experience in children with a wide range of disabilities.” Access to child-life specialists and social workers was identified as beneficial, particularly in addressing special needs.
Notwithstanding the benefits of supports, navigation and the experience of the ED were noted as difficult and, thus, potential barriers to PFCC. As an example, waiting rooms were described as overwhelming for children with ASD:
If there was a separate waiting room space that isolates [children with ASD] from the noise and the business. Because especially, you have a kid who shows up at our peak times, it’s busy, and children who are very distressed can be very disruptive, and that can be very “extra-distressing” for a child with autism.
Difficulties for families in the ED reportedly reflected ED insufficiency to accommodate the challenges of children with ASD: “[EDs] are designed for urgent medical care, they’re not designed for setting up an optimal communication encounter.” A staff member conveyed, “When you’re busy in [the ED], you just want to get things done, and so it’s hard to take into consideration their autism disorder.” Redesigning ED spaces and processes for children with ASD was viewed as an important priority for advancing PFCC.
Findings indicate a range of experiences that reveal the application of PFCC for children with ASD in the ED. These findings add to the limited literature on ED use by children with ASD6 and complement earlier results reported from these data.8–11 However, this review uniquely reveals the feasibility and benefit of ED care based on PFCC as a benchmark for considering ASD-sensitive care in the ED. Specific components of dignity and respect, participation, collaboration, and information sharing were noted to enhance family experience. For instance, listening to families was associated with generative ED encounters. Child-oriented resources, supports for families, and environmental resources (eg, conducive and welcoming waiting room design and wait-time strategies) are recommended. These findings concur with other research that amplifies the benefits of PFCC, including dimensions such as support, coordination of care, respect of parental and family preferences about involvement in care, partnership in decision-making, pain management, and continuity of care.4,8–11 The current review amplifies human resource and procedural considerations for heightened PFCC in the ED, requiring systemic, programmatic, and staff capacity building related to pro-ASD engagement with children and families. ED training in ASD has been shown to increase staff knowledge and comfort.14,15 Overall, incorporating a PFCC framework in the ED relative to ASD, as well as in general hospital and primary care, is strongly recommended. PFCC may need to be nuanced with considerations specific to an ASD and/or developmentally disabled population.
Achieving these aims invites consideration for patient and family advisors in care planning, including children and youth with ASD and parents who can speak to their experiences and issues in the context of local care processes and facilities. Such lived experience seems integral to the aim of identifying local issues and potential solutions “on the ground.” In addition, informed organization and unit leaders seem optimal in championing the advancement of ASD capacity in the ED. In this review, we illustrated clinicians with proficiencies in attending to ASD considerations in their care. Such team members seem illustrative of ideal candidates (or types of candidates) in roles as “insiders” to nurture program-level advancement of this agenda. To further advance PFCC, the following recommendations for EDs have emerged:
Appraise PFCC principles relative to their unique applicability to ED-based care for children with ASD and their families. This invites critical attention to practices, unit processes, and environmental considerations associated with both the delivery and experience of ED care.
Develop PFCC indicators and standards for ASD-based care in the ED.
Delineate areas of synergy and variance in ASD-based care relative to PFCC for neurotypical children.
Consider if, and if so how, children with ASD could be identified in the ED to signal (and thus ensure) ASD-sensitive care.
Identify strategies to achieve PFCC standards of ASD-based care in the ED. It is anticipated that this will involve intentional planning and concerted capacity building.
Consider training opportunities to ensure both orienting and ongoing professional development that heightens PFCC relative to ASD-based care in the ED.
Limitations and Recommendations for Further Research
In appraising qualitative data against a rubric of PFCC principles, we diverged from traditionally inductive qualitative analytic approaches by analyzing data according to a priori criteria. Although this approach resonated with the aims of this analysis, it is recognized that these methods differ from inductive coding typical of a qualitative study. Different methodologic approaches and a larger sample are recommended to better represent the diversity of family experiences across the range of ASD expression as well as regional and program differences. These findings warrant a larger quantitative study to examine the extent to which PFCC, relative to ASD, is delivered in the ED. Interventional and longitudinal research is warranted, with implementation science recommended in the aim of PFCC advancement in ED care for children with ASD and their families.
PFCC is increasingly recognized as a means to augment child and family experience in health care. The unique challenges and care considerations for children with ASD and their families within the ED invite scrutiny and practice advancement. Given that the ED risks heightened struggle and distress for children with ASD because of sensory-intensive environments and urgency often imposed within processes of care, PFCC is a promising priority for proactive care. Such care invites attentiveness to the unique needs of children with ASD. Accordingly, critical reflection on ASD care in the ED offers an important lens for appraising and advancing PFCC.
Dr Nicholas conceptualized and designed the study, took part in data collection at one of the sites, conducted the data analysis, and drafted the initial manuscript; Drs Muskat and Zwaigenbaum conceptualized and designed the study, took part in data collection at one of the sites, and reviewed and revised the manuscript; Ms Greenblatt and Dr Craig took part in data collection at one of the sites and reviewed and revised the manuscript; Drs Ratnapalan, Roberts, Cohen-Silver, Newton, and Sharon reviewed and revised the manuscript; Mr Kilmer took part in data collection at one of the sites, conducted the data analysis, and drafted the initial manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
FUNDING: Supported by cooperative agreement UA3 MC11054 through the US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to Massachusetts General Hospital and conducted through the Autism Speaks Autism Treatment Network serving as the Autism Intervention Research Network on Physical Health.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.