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Designing a Sensory Kit to Improve the Environment for Children with Autism Spectrum Disorder in the Pediatric Emergency Department

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Title: Designing a Sensory Kit to Improve the Environment for Children with Autism Spectrum Disorder in the Pediatric Emergency Department
Language: English
Authors: Litwin, Sasha (ORCID 0000-0002-9145-6577), Sellen, Kate
Source: Journal of Autism and Developmental Disorders. Sep 2023 53(9):3369-3379.
Availability: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
Peer Reviewed: Y
Page Count: 11
Publication Date: 2023
Document Type: Journal Articles
Reports - Research
Descriptors: Sensory Experience, Equipment, Medical Services, Children, Autism Spectrum Disorders, Pediatrics, Emergency Programs, Parent Attitudes, Satisfaction
DOI: 10.1007/s10803-022-05651-7
ISSN: 0162-3257
1573-3432
Abstract: Children with autism spectrum disorder (ASD) have more frequent use of healthcare services, including visits to the emergency department (ED). Medical care for children with ASD can be adversely affected by the highly stimulating environment of the ED. In this study, we gained insights from stakeholders with lived experience (parents of children with ASD, children with ASD, and ED healthcare providers) to create and implement a sensory equipment kit. The kit was evaluated and iteratively improved based on observations of children using the sensory equipment, satisfaction surveys from their parents, and interviews with healthcare providers in the ED. Findings from this study can be used to guide other EDs in creating their own ASD sensory kit.
Abstractor: As Provided
Entry Date: 2023
Accession Number: EJ1390410
Database: ERIC
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  Value: <anid>AN0170899334;aut01sep.23;2023Aug31.03:50;v2.2.500</anid> <title id="AN0170899334-1">Designing a Sensory Kit to Improve the Environment for Children with Autism Spectrum Disorder in the Pediatric Emergency Department </title> <p>Children with autism spectrum disorder (ASD) have more frequent use of healthcare services, including visits to the emergency department (ED). Medical care for children with ASD can be adversely affected by the highly stimulating environment of the ED. In this study, we gained insights from stakeholders with lived experience (parents of children with ASD, children with ASD, and ED healthcare providers) to create and implement a sensory equipment kit. The kit was evaluated and iteratively improved based on observations of children using the sensory equipment, satisfaction surveys from their parents, and interviews with healthcare providers in the ED. Findings from this study can be used to guide other EDs in creating their own ASD sensory kit.</p> <p>Keywords: Autism; Emergency department; Design thinking; Sensory; Pediatric</p> <p>Supplementary Information The online version contains supplementary material available at https://doi.org/10.1007/s10803-022-05651-7.</p> <hd id="AN0170899334-2">Introduction</hd> <p>Children with autism spectrum disorder (ASD) have significantly more healthcare visits of all types, including emergency and non-emergency visits (Gurney et al., [<reflink idref="bib13" id="ref1">13</reflink>]). Youth with ASD access the emergency department (ED) more than their same-age peers, with one study showing a fivefold increase in visits even after adjusting for confounders like age and health status (Liu et al., [<reflink idref="bib17" id="ref2">17</reflink>]). In a 2011 retrospective review of children presenting to a tertiary care pediatric ED, children and youth with ASD made up 2% of all ED visits (Cohen-Silver et al., [<reflink idref="bib7" id="ref3">7</reflink>]).</p> <p>Many healthcare environments are not equipped to appropriately address the needs of children with ASD (Gabriels et al., [<reflink idref="bib10" id="ref4">10</reflink>]). EDs may be even more challenging environments than other areas of the hospital given the intensity of sensory stimuli (Giarelli et al., [<reflink idref="bib11" id="ref5">11</reflink>]; Zwaigenbaum et al., [<reflink idref="bib34" id="ref6">34</reflink>]). Particular challenges of the ED include the chaotic environment, unpredictable wait times, lack of food or water for prolonged periods of time, invasion of personal space from multiple people in various roles, and discomfort from procedures (Nicholas et al., [<reflink idref="bib23" id="ref7">23</reflink>], [<reflink idref="bib24" id="ref8">24</reflink>]; Souders et al., [<reflink idref="bib29" id="ref9">29</reflink>]). Prior research with caregivers of children with ASD found that the delivery of care in the ED was insufficient to meet the unique needs of their children. When there were supports, there was often a lack of communication about what supports were available, for example, volunteers and Child Life Specialists (Muskat et al., [<reflink idref="bib22" id="ref10">22</reflink>]; Nicholas et al., [<reflink idref="bib23" id="ref11">23</reflink>], [<reflink idref="bib24" id="ref12">24</reflink>]). These challenges affect the child's experience and the healthcare provider's ability to assess and treat the child safely and appropriately (Al Sharif & Ratnapalan, [<reflink idref="bib1" id="ref13">1</reflink>]). Many healthcare encounters for individuals with ASD result in escalating behaviors that require chemical sedation or physical restraints. In one study of individuals with ASD, 23% of emergency healthcare encounters required the use of sedation or restraints, and in some cases, security or police were involved (Lunsky et al., [<reflink idref="bib18" id="ref14">18</reflink>]).</p> <p>Nicholas et al., ([<reflink idref="bib23" id="ref15">23</reflink>], [<reflink idref="bib24" id="ref16">24</reflink>]) identified the need for child-focused supports in the ED such as sensory-rich items. The majority of children and youth with ASD have sensory sensitivities, though there is significant individual variation in preferences and aversions (Leekam et al., [<reflink idref="bib16" id="ref17">16</reflink>]). Environmental modifications, such as quiet spaces for waiting and availability of fidget and sensory toys can help children stay calm (Hudson, [<reflink idref="bib15" id="ref18">15</reflink>]; Nicholas et al., [<reflink idref="bib23" id="ref19">23</reflink>], [<reflink idref="bib24" id="ref20">24</reflink>]). There are several ways to improve the sensory environment for individuals with ASD. Precedents exist in healthcare and other spaces, such as dental offices, airports, theaters and amusement parks (Cermak et al., [<reflink idref="bib5" id="ref21">5</reflink>]; Harpaz, [<reflink idref="bib14" id="ref22">14</reflink>]; Sesame Place, [<reflink idref="bib27" id="ref23">27</reflink>]; Toronto Symphony Orchestra, [<reflink idref="bib32" id="ref24">32</reflink>]). Interventions range from higher cost, such as specific architectural design (Beaver, [<reflink idref="bib2" id="ref25">2</reflink>]; Scott, [<reflink idref="bib26" id="ref26">26</reflink>]) and dedicated quiet or sensory spaces (for example, Snoezelen rooms) to lower cost, such as providing sensory equipment and toys.</p> <p>Even though the sensory environment can create a barrier to good care for children in the ED and there are known interventions that can improve the experience, there are very few published studies on interventions. Drake et al. ([<reflink idref="bib9" id="ref27">9</reflink>]) implemented a coping kit for pediatric inpatients and evaluated the cost effectiveness and nurse perception of the usefulness of the kit. The coping kit consisted of visual communication tools, such as schedules, paper and pencil, social stories, and sensory toys, including spinning and mouthing toys. The coping kits were most commonly used for distraction. The majority of nurses in the study (19/24; 79%) thought that the kit increased the child's coping and ability to participate in procedures. Parents were eager to use the items and reported that the kit helped them work collaboratively with their child and the healthcare team. The study was stopped prematurely after recruiting 24 patients due to its perceived positive impact on coping and the decision by the Child Life Specialist to include the cost of the $35 kit in their budget for all children with unique sensory needs. No sensory intervention of this kind has been described in the ED environment.</p> <hd id="AN0170899334-3">Purpose of the Project</hd> <p>The purpose of this project was to design and implement a low-cost sensory intervention that could improve the ED experience for children with ASD and their families.</p> <hd id="AN0170899334-4">Methods</hd> <p></p> <hd id="AN0170899334-5">Study Design</hd> <p>The study was a design research project conducted with parents of children with ASD, healthcare providers who care for children with ASD, and children with ASD. The project included design methods supportive of a participatory approach commonly applied in health contexts (Greenhalgh et al., [<reflink idref="bib12" id="ref28">12</reflink>]; Mrklas et al., [<reflink idref="bib21" id="ref29">21</reflink>]). These methods included interviews, journey mapping, observations and satisfaction surveys (Marquez et al., [<reflink idref="bib19" id="ref30">19</reflink>]). The study was iterative, including cycles of interviews, observation and satisfaction surveys as the study progressed. The iterative process provided an opportunity to create an intervention responsive to children's, parents' and healthcare providers' needs. Table 1 describes the research techniques used and how many participants were involved in each method.</p> <p>Table 1 Research techniques and participants involved</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left"><p>Research technique</p></th><th align="left"><p>Number of participants involved</p></th><th align="left"><p>Type of participants</p></th></tr></thead><tbody><tr><td align="left"><p>Semi-structured interview</p></td><td align="left"><p>14</p></td><td align="left"><p>Parents of children with ASD</p></td></tr><tr><td align="left"><p>Journey map</p></td><td align="left"><p>14</p></td><td align="left"><p>Parents of children with ASD</p></td></tr><tr><td align="left"><p>Observation—iteration 1</p></td><td align="left"><p>8</p></td><td align="left"><p>Children with ASD</p></td></tr><tr><td align="left"><p>Satisfaction survey—iteration 1</p></td><td align="left"><p>8</p></td><td align="left"><p>Parents of children with ASD</p></td></tr><tr><td align="left"><p>Unstructured interviews</p></td><td align="left"><p>8</p></td><td align="left"><p>Healthcare providers, Child Life Specialists</p></td></tr><tr><td align="left"><p>Observation—iteration 2</p></td><td align="left"><p>18</p></td><td align="left"><p>Children with ASD</p></td></tr><tr><td align="left"><p>Satisfaction survey—iteration 2</p></td><td align="left"><p>18</p></td><td align="left"><p>Parents of children with ASD</p></td></tr></tbody></table> </ephtml> </p> <p> <emph>ASD</emph> autism spectrum disorder</p> <hd id="AN0170899334-6">Compliance with Ethical Standards</hd> <p>Ethics approval was granted for the design research component by the Research Ethics Board of the supervising University. The implementation of the kit in the ED was approved by the hospital's Quality and Risk Management Department.</p> <hd id="AN0170899334-7">Setting</hd> <p>The project took place from March 2018 to March 2020. The sensory kit was implemented in the ED of a tertiary care free-standing pediatric hospital in a large urban center. A Child Life Specialist works in the ED daily to support children during their visit.</p> <hd id="AN0170899334-8">Participant Recruitment</hd> <p>Recruitment was by purposeful sampling. Interview participants were parents of children with ASD who had attended the ED with their child in the past year. Parents were recruited from a clinic serving families with a child with ASD, postings on a local ASD website and a blurb in a local ASD newsletter.</p> <hd id="AN0170899334-9">Interviews</hd> <p>One hour one-on-one interviews were conducted in person or by telephone. Interviews continued until data were saturated. Interviews followed a semi-structured format guided by the following five categories: (<reflink idref="bib1" id="ref31">1</reflink>) demographic details about the child and family, (<reflink idref="bib2" id="ref32">2</reflink>) experience in the ED and analogous high sensory settings, (<reflink idref="bib3" id="ref33">3</reflink>) preferred language about their child's ASD diagnosis and stigma associated with sharing their child's ASD diagnosis in the ED setting, (<reflink idref="bib4" id="ref34">4</reflink>) signs/symbol that could be used by the ED to identify ASD friendly spaces, and (<reflink idref="bib5" id="ref35">5</reflink>) preferred sensory toys and equipment (Online Appendix 1). Images of signs and symbols used to represent ASD and photos of sensory equipment were used to supplement the interview questions. Parents who participated in the interviews were re-engaged with photos and a description of the prototype to validate their insights. Re-engaging parents was a method of participatory iterative prototyping (Spinuzzi, [<reflink idref="bib30" id="ref36">30</reflink>]).</p> <hd id="AN0170899334-10">Journey Map</hd> <p>Journey mapping is a design research technique that helps designers understand a person's experience of a product, service or space over time (Miller & Flowers, [<reflink idref="bib20" id="ref37">20</reflink>]). Parents were guided through a journey map of the ED visit and asked to identify areas of particular challenge (Fig. 1). Parents were given three sticky tabs to place on the three places that were most challenging for their child. For interviews done by telephone, the participant was guided through the journey map virtually.</p> <p>Graph: Fig. 1Journey map</p> <hd id="AN0170899334-11">Creation of the Sensory Kit</hd> <p>Information from the interviews and journey mapping was used to generate the first prototype of the sensory kit. The kit was offered to children at the discretion of the Child Life Specialist or treating medical team, which is the same approach used for other distraction or comfort items.</p> <hd id="AN0170899334-12">Sensory Kit Evaluation Methods</hd> <p></p> <hd id="AN0170899334-13">Observations</hd> <p>Child Life Specialists (<reflink idref="bib2" id="ref38">2</reflink>), child life volunteers (<reflink idref="bib2" id="ref39">2</reflink>) or research assistants (<reflink idref="bib2" id="ref40">2</reflink>) observed all the children who used the kit. Volunteers and research assistants recorded their observations of the child interacting with the kit in a log when it was feasible to do so based on other patient needs in the ED. They also recorded any unsolicited comments or recommendations provided by parents or healthcare providers. Observations took place throughout the study.</p> <hd id="AN0170899334-14">Satisfaction Surveys</hd> <p>Parents of children who used the sensory kit completed a 5-question satisfaction survey to evaluate how well the sensory kit improved their child's experience, items their child used, and suggestions for adding items (Online Appendix 2).</p> <hd id="AN0170899334-15">Interviews with Healthcare Providers</hd> <p>Individual unstructured interviews with healthcare providers and Child Life Specialists working in the ED were conducted throughout the project to refine the prototype.</p> <hd id="AN0170899334-16">Data Analysis</hd> <p>Qualitative data from interviews and journey mapping were analysed using a general inductive approach. This approach involves reading through the raw text to identify meaningful segments and allowing themes to emerge without a preconceived idea of what the data will show. The analysis was used to transform themes into actionable design criteria, rather than create a model or theory (Thomas, [<reflink idref="bib31" id="ref41">31</reflink>]). Quantitative data were analyzed with descriptive statistics.</p> <hd id="AN0170899334-17">Results</hd> <p>A total of 14 semi-structured interviews were conducted with parents of children with ASD (13 mothers, 1 father). Data about parent age, ethnicity and socioeconomic status were not collected. A total of 26 children used the kit and completed satisfaction surveys. They ranged from 2.5 to 16 years old (mean 8.2) and all had a diagnosis of ASD. Comorbid diagnoses included attention deficit hyperactivity disorder (ADHD), Down Syndrome, hearing impairment, visual impairment, developmental delay, and anxiety.</p> <p>Six themes emerged from interviews and journey mapping. Themes are described below with supporting quotations. Each theme resulted in an actionable design criterion that guided the creation of the sensory kit.</p> <p> <emph>Theme 1:</emph> Sensory stimulation in the environment can impact children's behavior.</p> <p>Sensations in the environment may impact children with ASD differently than other children. Children with ASD will each have unique preferences and aversion to sensory stimuli. Supporting quotations from parents illustrate challenges with different sensory modalities in the environment.</p> <p>Visual:"The long walk down the hallway to the room, sensory wise, it's gloomy.""It is hard going from the bright atrium to dark hallway."</p> <p>Auditory:"One time when we went [to the ED], the nurse turned off the monitor that makes all those beeping noises. He hates that and she turned off the sound somehow. That made a huge difference.""He is very sensitive to sound. Without headphones, the beeping would be a problem."</p> <p>Olfactory:"Stinky winter coats [cause him distress]. It may seem like a trivial thing for some."</p> <p>Tactile:"They want to take vitals, but it's difficult to physically handle my child, especially touching with cold metal.""He loves kinetic feelings. He likes the tactile pressure of being squeezed."</p> <p>The design criteria derived from this theme was that the kit must have items for several sensory modalities and appeal to children who prefer high and low sensory input.</p> <p> <emph>Theme 2:</emph> Waiting is difficult for all children, but can be particularly difficult for those with ASD.</p> <p>Parents describe the extraordinary difficulty their children had with waiting. Good experiences in the ED were generally from times when care was "fast-tracked" or wait times were minimal. A supporting quotation from a parent illustrates the challenge with waiting."The waiting between each step [was the most challenging]—in particular the lack of clarity."</p> <p>The design criteria derived from this theme was that the kit must improve the waiting experience.</p> <p> <emph>Theme 3:</emph> Aim for flexibility, not fairness.</p> <p>Parents expressed a need for flexibility in standard routines and consideration for what is fair for children with special needs. Supporting quotations from parents illustrate challenge of healthcare providers aiming for fairness."[We were told,] 'this is the policy, you don't get special treatment.'""When we asked to be fast tracked, we were always told: no, it's not fair."</p> <p>The design criteria derived from this theme was that the kit must promote equity rather than equality.</p> <p> <emph>Theme 4:</emph> Identify children with ASD early in their visit.</p> <p>Parents wanted to disclose their child's ASD diagnosis as soon as possible. Parents reported that the sooner the team could understand their child's needs, the sooner they would be able to best care for their child."The first word out of my mouth is, 'she has autism.'""Just come out and ask. I don't find it offensive. This is the reality of my situation.""I'm very upfront at emerg but not with family. With healthcare it is different. We prefer not to tell family and friends. We have never said anything because we don't want them to treat him differently. I tell triage right off the bat."</p> <p>The design criteria derived from this theme was that the ED must communicate which resources are available to children with ASD as soon as they arrive.</p> <p> <emph>Theme 5:</emph> Parents are experts in their child's care.</p> <p>Parents wanted to be acknowledged for their expertise and work as partners with the healthcare team. Supporting quotations from parents illustrate their frustration when healthcare providers didn't listen to their suggestions and their child experienced an adverse outcome."Ask, 'How can we support your child to self-regulate in this space?'""Ask the parent 'is your child ok with being touched?' or say 'we will follow your lead.'"</p> <p>The design criteria derived from this theme was that the kit must respect parents as the authority on their child's needs.</p> <p> <emph>Theme 6:</emph> Learn from analogous settings.</p> <p>Several parents reported that airports, movie theaters and theme parks were more accommodating than the ED. Supporting quotations from parents illustrate the differences between the ED and other settings."When we go to the dentist, I explain the situation, these are some of the challenges, can we have an appointment first thing in the morning. They can accommodate that.""They let us board ahead to avoid going onto the plane with the crowd. Airports are way more accommodating than hospitals.""[The amusement park] gives us access to a card so we don't have to wait in line.""[The movie theatre] allows a chaperone and sensory accommodations."</p> <p>The design criteria derived from this theme was that the solution should draw inspiration from successful features in analogous settings.</p> <hd id="AN0170899334-18">First Iteration of the Sensory Kit</hd> <p>An ED physician and Child Life Specialist assembled the preliminary sensory kit. The kit included commonly used and requested items (Table 2). The items were placed in a clear plastic bin labeled with a list of the contents (Fig. 2). The kit was stored in the ED. Signs were placed in the ED waiting room and at registration to inform parents about the kit. ED physicians were notified about the bin and how to use it by an announcement at a staff meeting and via email.</p> <p>Table 2 Contents, cost and goals of items in the sensory kit</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left"><p>Item</p></th><th align="left"><p>Approximate cost (USD)</p></th><th align="left"><p>Goal of the item</p></th><th align="left"><p>Sensory modality</p></th></tr></thead><tbody><tr><td align="left" colspan="4"><p><italic>Iteration 1 (Total $292)</italic></p></td></tr><tr><td align="left"><p>Squishy balls (multiple textures, colors, sizes)</p></td><td align="left"><p>$ 8/item, total $60</p></td><td align="left"><p>Calming, attention</p></td><td align="left"><p>Tactile, proprioception</p></td></tr><tr><td align="left"><p>Fidget toys (multiple textures, colors, sizes)</p></td><td align="left"><p>$ 6/item, total $18</p></td><td align="left"><p>Calming, attention</p></td><td align="left"><p>Tactile, proprioception</p></td></tr><tr><td align="left"><p>Vibrating pillow</p></td><td align="left"><p>$75</p></td><td align="left"><p>Calming, pressure, balance</p></td><td align="left"><p>Tactile, vestibular</p></td></tr><tr><td align="left"><p>Sunglasses</p></td><td align="left"><p>$5</p></td><td align="left"><p>Reduce light input</p></td><td align="left"><p>Visual</p></td></tr><tr><td align="left"><p>Spinning toy</p></td><td align="left"><p>$6</p></td><td align="left"><p>Stimulating or calming</p></td><td align="left"><p>Visual, tactile</p></td></tr><tr><td align="left"><p>Colored acetate shapes</p></td><td align="left"><p>$25</p></td><td align="left"><p>Alter light input</p></td><td align="left"><p>Visual, tactile</p></td></tr><tr><td align="left"><p>Noise-cancelling headphones</p></td><td align="left"><p>$46</p></td><td align="left"><p>Reduce auditory input</p></td><td align="left"><p>Auditory</p></td></tr><tr><td align="left"><p>Water-filled squishy mat</p></td><td align="left"><p>$35</p></td><td align="left"><p>Pressure, balance, calming</p></td><td align="left"><p>Tactile, proprioception, vestibular</p></td></tr><tr><td align="left"><p>Plastic bin</p></td><td align="left"><p>$10</p></td><td align="left"><p>Storage</p></td><td align="left"><p>n/a</p></td></tr><tr><td align="left" colspan="4"><p><italic>Iteration 2 (Total $455)</italic></p></td></tr><tr><td align="left"><p>Squishy balls (multiple textures, colors, sizes)</p></td><td align="left"><p>$ 8/item, total $60</p></td><td align="left"><p>Calming, attention</p></td><td align="left"><p>Tactile, proprioception</p></td></tr><tr><td align="left"><p>Fidget toys (multiple textures, colors, sizes)</p></td><td align="left"><p>$ 6/item, total $18</p></td><td align="left"><p>Calming, attention</p></td><td align="left"><p>Tactile, proprioception</p></td></tr><tr><td align="left"><p>Large rubber balls</p></td><td align="left"><p>$70/item, total $140</p></td><td align="left"><p>Calming, pressure, balance</p></td><td align="left"><p>Tactile, proprioception, vestibular,</p></td></tr><tr><td align="left"><p>Sunglasses</p></td><td align="left"><p>$5</p></td><td align="left"><p>Reduce light input</p></td><td align="left"><p>Visual</p></td></tr><tr><td align="left"><p>Light up toy</p></td><td align="left"><p>$12</p></td><td align="left"><p>Alter light input</p></td><td align="left"><p>Visual</p></td></tr><tr><td align="left"><p>Mechanical spinning ball</p></td><td align="left"><p>$35</p></td><td align="left"><p>Stimulating or calming, movement</p></td><td align="left"><p>Visual, tactile</p></td></tr><tr><td align="left"><p>Flowing squishy bead tube</p></td><td align="left"><p>$37</p></td><td align="left"><p>Calming, attention, pressure</p></td><td align="left"><p>Tactile, proprioception</p></td></tr><tr><td align="left"><p>Liquid timer</p></td><td align="left"><p>$30</p></td><td align="left"><p>Calming, attention, movement</p></td><td align="left"><p>Visual, tactile</p></td></tr><tr><td align="left"><p>Noise-cancelling headphones</p></td><td align="left"><p>$46</p></td><td align="left"><p>Reduce auditory input</p></td><td align="left"><p>Auditory</p></td></tr><tr><td align="left"><p>Playdough, various colors</p></td><td align="left"><p>$2 per use</p></td><td align="left"><p>Calming, pressure</p></td><td align="left"><p>Tactile, proprioception, visual</p></td></tr><tr><td align="left"><p>Weighted lap mat</p></td><td align="left"><p>$70</p></td><td align="left"><p>Deep pressure, calming</p></td><td align="left"><p>Tactile, proprioception</p></td></tr><tr><td align="left"><p>Tablet and charging cable</p></td><td align="left"><p>Provided by the ED, cost $350</p></td><td align="left"><p>Technology distraction, communication</p></td><td align="left"><p>Visual, auditory</p></td></tr><tr><td align="left"><p>Light up bubble tower</p></td><td align="left"><p>Provided by the hospital, cost $1000</p></td><td align="left"><p>Stimulating or calming, alter light and color</p></td><td align="left"><p>Visual, auditory</p></td></tr><tr><td align="left"><p>Rolling cart</p></td><td align="left"><p>Provided by the hospital, cost $700</p></td><td align="left"><p>Storage</p></td><td align="left"><p>n/a</p></td></tr></tbody></table> </ephtml> </p> <p>Graph: Fig. 2First iteration of the sensory kit and signage</p> <p>Between May and November 2018, we implemented the first iteration of the sensory kit and observed children using the kit in the ED. Parents reported high satisfaction with the sensory kit and had many suggestions for the addition of items (Table 3). Qualitative comments were all very positive. For example, according to one parent, "[the kit] should be given as an option all the time."</p> <p>Table 3 Satisfaction survey results</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left" /><th align="left"><p>Surveys collected</p></th><th align="left"><p>When was sensory kit used?</p></th><th align="left"><p>Which items were used?</p></th><th align="left"><p>Suggestions for new items?</p></th><th align="left"><p>Satisfaction: Healthcare providers took the time to understand my child's needs</p></th><th align="left"><p>Satisfaction: The kit of sensory equipment improved my child's experience in the ED</p></th></tr></thead><tbody><tr><td align="left"><p>Iteration 1</p></td><td align="left"><p>8</p></td><td align="left"><p>Exam room</p><p>During procedures</p></td><td align="left"><p>Sticky and squishy balls</p><p>Vibrating pillow</p><p>Noise-cancelling earphones</p></td><td align="left"><p>Flowing water or sand</p><p>Fiberoptic light</p><p>Objects to chew on Bubbles</p></td><td align="left"><p>4.75/5; agree or strongly agree</p></td><td align="left"><p>4.75/5; agree or strongly agree</p></td></tr><tr><td align="left"><p>Iteration 2</p></td><td align="left"><p>18</p></td><td align="left"><p>Exam room</p><p>During procedures</p><p>Waiting room</p></td><td align="left"><p>Bubble tower</p><p>Squishy balls</p><p>Playdough</p><p>Weighted mat</p></td><td align="left"><p>Light up toys</p><p>Music or sound machine</p></td><td align="left"><p>4.2/5; agree</p></td><td align="left"><p>4.4/5; agree or strongly agree</p></td></tr></tbody></table> </ephtml> </p> <p>Likert scale: 1, strongly disagree; 2, disagree; 3, neutral; 4, agree; 5, strongly agree</p> <hd id="AN0170899334-19">Feedback from ED Staff</hd> <p>We engaged healthcare providers to share reflections and immediate reactions after using the kit. This emergent feedback allowed for opportunity-based changes to the design of the kit. Items were added to the kit as they were suggested by Child Life Specialists and healthcare providers. ED clinicians who championed the kit reported enjoying using it but felt the bin was heavy and cumbersome to carry to each child's room. Child Life Specialists and nurses used the bin more frequently than physicians. One healthcare provider suggested that the kit should 'transform the room.'</p> <hd id="AN0170899334-20">Second Iteration of the Sensory Kit</hd> <p>The second iteration of the kit was created by the research team and Child Life Specialists based on survey responses from parents, observations of children with ASD using the kit, participatory iterative prototyping via email exchanges with parents, and feedback from healthcare providers (Table 2). The second iteration of the kit included a bubble tower with a remote control that children could use to change the light color (Fig. 3). The bubble tower light transformed the hue and light in the exam room. The kit was moved to a 4-wheel rolling cart to improve the ease of transporting the kit to different areas of the ED. A second iteration of signage with photos of the kit contents was created and placed in the ED to better inform parents of the available resource.</p> <p>Graph: Fig. 3Second iteration of the sensory kit and signage</p> <p>From January to March 2020, we collected 18 satisfaction surveys from parents after their child used the sensory kit in the ED. Parents continued to report high satisfaction with the sensory kit (Table 3). 11 of 18 children reported using the bubble tower and in particular, reported enjoying the remote control that allowed them to change the color of the light. A representative parent comment: "[The bubble tower] helped him calm down and was a great visual piece for him. He kept looking at it and [was] interested every time the colors changed."</p> <hd id="AN0170899334-21">Feedback from ED Staff</hd> <p>Feedback from parents and children was overwhelmingly positive. According to one research assistant, "parents were appreciative of the cart and the efforts to make the ED more inclusive for kids with ASD." Many members of the healthcare team reported being relieved to have something in the ED that helped distract children with ASD and make their visit more comfortable. Physicians reported that it was challenging to use the kit given the demands on their time for other tasks.</p> <hd id="AN0170899334-22">Discussion</hd> <p>The ED can be a challenging sensory environment for children with ASD. The aim of this study was to improve the ED experience for children with ASD and their parents. We followed a design approach using an iterative process of improvement and refinement to create an intervention that was responsive to children's needs. We found that it was feasible to create and implement a sensory kit for children with ASD in the ED. The intervention was greatly appreciated by children, parents and healthcare providers and is still in regular use, now four years after creating it, which demonstrates how a design approach, specifically gaining insights from the individuals who will use the product or service, can yield a result that is sustainable.</p> <p>As we refined the kit, we found that it was essential to include items that could be used by children with variety of sensory preferences and aversions, such as items that are tactile and proprioceptive (squishy and textured balls), visual (light up toys, colored lenses), vestibular (squishy mat, vibrating pillow), and auditory (music). Children with ASD may have preferences for high sensory items versus items that reduce or calm sensory input (for example, noise-cancelling headphones, sunglasses) so we ensured that there were items that met both preferences. From our experience, we developed recommendations for other EDs or clinics who want to create a sensory intervention for children with ASD (Table 4).</p> <p>Table 4 Recommendations for a sensory kit</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left"><p>Recommendation</p></th><th align="left"><p>Description</p></th></tr></thead><tbody><tr><td align="left"><p>Individual preferences</p></td><td align="left"><p>Children with ASD have significant variability in their sensory preferences and aversions. It is challenging to create a sensory kit that can meet all children's needs. We recommend including items that accommodate different sensory modalities and can stimulate or reduce sensory input</p></td></tr><tr><td align="left"><p>Transform the space</p></td><td align="left"><p>Light and color are effective at transforming a space without making permanent alterations. Using a colorful, light up bubble tower transformed the room in our ED. Fibre optics or projectors can similarly change the sensory environment</p></td></tr><tr><td align="left"><p>Replacement items</p></td><td align="left"><p>Any ED or clinic considering a sensory kit needs an ongoing budget to replace items. Over the course of the project, we kept an inventory of items in the kit. There were a significant number of items that were taken or lost. The items most commonly needing replacement were the small toys and squishy balls. Playdough and chewing toys were included but limited to single use</p></td></tr><tr><td align="left"><p>Infection control</p></td><td align="left"><p>Create an infection control plan to ensure that items are disinfected after each use. In our ED, the Child Life Specialist, nurse or volunteer that delivered the kit was responsible for disinfecting the items after use</p></td></tr><tr><td align="left"><p>Ease of use</p></td><td align="left"><p>Ensure the sensory kit can be easily moved between rooms to make it practical to use. We opted for a rolling cart for better mobility</p></td></tr><tr><td align="left"><p>Communication with families</p></td><td align="left"><p>It is important to have communications (signage, handouts, verbal notifications) to inform parents of the kit. Be aware that logos and symbols associated with ASD can be divisive and no single symbol is accepted</p></td></tr><tr><td align="left"><p>Systems improvements</p></td><td align="left"><p>There are many opportunities for systems interventions that can improve the ED experience for children with ASD. Systems improvements may include fast-tracked entry, consistency in the environment (offer the same room each visit, less frequent room changes), flexible waiting spaces, and flexible procedures (alternatives to wearing an identity or allergy bracelet, minimizing repeated examinations and vital sign monitoring)</p></td></tr></tbody></table> </ephtml> </p> <p>There are many publications that describe the challenges for children with ASD in the ED, but very few describing any interventions. Compared to a similar intervention of a coping kit for pediatric in-patient hospital use (Drake et al., [<reflink idref="bib9" id="ref42">9</reflink>]), we found that parents were enthusiastic about the kit and eager to use items. Nurses in their study perceived that the time spent retrieving the kit was less than the time it would have taken to gain the child's cooperation without the kit. Time spent retrieving the kit was noted to be a barrier to use from healthcare providers in our ED. As an effective solution, we created a rolling cart and encouraged volunteers to use bring the kit to families rather than the healthcare team. Each clinical space will have spatial features that require a unique approach to transporting the sensory kit.</p> <p>In terms of the feasibility of implementing the sensory kit, we expected some items to be lost or taken. We noted a cost of replacing up to half the small items every few months. For infection control purposes, we only opted for items that could be easily cleaned with anti-viral wipes and ensured it was the responsibility of the individual who brought the cart to the child to clean the items. Items that are difficult to clean (squishy toys, playdough, chewing toys) were included, however, we limited them to single use and allowed the child to bring them home.</p> <p>Some hospitals and medical clinics have multi-sensory rooms where occupational therapists and Child Life Specialists can provide individualized assessments and sensorimotor therapies. A comprehensive assessment of each individual child's sensory and motor factors impacting their performance and participation would be ideal. In the ED, where there is rarely, if ever, access to a multi-sensory room or specialized assessment and therapy, portable sensory equipment kits like the one created in this study are a practical option. O'Hagan et al. ([<reflink idref="bib25" id="ref43">25</reflink>]) describes multiple interventions and approaches used to create an autism friendly hospital. As one of the interventions, the team created autism toolboxes, which included items such as sunglasses, noise-cancelling headphones, weighted lap pad and a visual timer. The toolboxes were distributed to clinical areas throughout Boston Medical Center, though were not available in the ED (Boston Medical Center, [<reflink idref="bib3" id="ref44">3</reflink>]).</p> <p>In most EDs and clinics, parents must bring their own sensory equipment. There are several resources online and through local autism communities that give examples of what parents can put in a sensory kit (for example, Dahlhauser et al., [<reflink idref="bib8" id="ref45">8</reflink>]). Several options for kits are available for purchase online. However, these suggestions only apply to parents who have the resources to purchase and assemble their own kit or the time to plan ahead when coming to the ED. A kit that is available in the ED for everyone's use is more equitable.</p> <p>Recently, non-medical spaces, such as airports, theaters and amusement parks have developed interventions to improve the sensory space for children with ASD (Cineplex, [<reflink idref="bib6" id="ref46">6</reflink>]; Harpaz, [<reflink idref="bib14" id="ref47">14</reflink>]; Sesame Place, [<reflink idref="bib27" id="ref48">27</reflink>]; Toronto Symphony Orchestra, [<reflink idref="bib32" id="ref49">32</reflink>]). Hospitals are placing increasing emphasis on improving the patient and family experience (Sonis et al., [<reflink idref="bib28" id="ref50">28</reflink>]). Research about individuals with ASD continues to describe gaps in care (Vivanti et al., [<reflink idref="bib33" id="ref51">33</reflink>]). Hospitals should take note of these interventions in analogous industries and aim to adapt them to the clinical space.</p> <p>We followed the tenet of participatory and human-centred design that interventions designed with the individuals or communities that will use them will be better designed and more successful (Bronson et al., [<reflink idref="bib4" id="ref52">4</reflink>]). We want to share this design method and sensory intervention so that both can be adapted for use in other centres.</p> <hd id="AN0170899334-23">Limitations</hd> <p>There are limitations in the study that should be considered when interpreting the results. All parents volunteered to participate in the interviews based on their own interest to contribute to the project, which leads to selection bias. Many of the parents were involved in local advocacy projects to improve services for ASD. These parents may be more willing than other parents to share their child's diagnosis and have greater insight into the healthcare system and interventions. Secondly, the ED where the project was implemented is a tertiary care center that has support from a dedicated Child Life Specialist from 1100 to 2300. Resource availability (budget, storage, personnel) considerations are important when generalizing the success of this project to other EDs, hospitals spaces and clinics.</p> <hd id="AN0170899334-24">Acknowledgments</hd> <p>Thank you to the parents who offered their insights. Thank you to Salina Eldon for helping to recruit participants. Thank you to the ED staff and volunteers who championed the kit.</p> <hd id="AN0170899334-25">Author Contributions</hd> <p>Authors SL and KS conceived and designed the analysis. SL collected and analyzed the data. SL wrote the paper and KS revised the paper.</p> <hd id="AN0170899334-26">Declarations</hd> <p></p> <hd id="AN0170899334-27">Conflict of interest</hd> <p>The authors have no relevant financial or non-financial interests to disclose.</p> <hd id="AN0170899334-28">Supplementary Information</hd> <p>Below is the link to the electronic supplementary material.</p> <p>Graph: Supplementary file1 (DOCX 17 KB)</p> <p>Graph: Supplementary file2 (DOCX 17 KB)</p> <hd id="AN0170899334-29">Publisher's Note</hd> <p>Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.</p> <ref id="AN0170899334-30"> <title> References </title> <blist> <bibl id="bib1" idref="ref13" type="bt">1</bibl> <bibtext> Al Sharif S, Ratnapalan S. Managing children with autism spectrum disorders in emergency departments. 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  Label: Descriptors
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  Data: <searchLink fieldCode="DE" term="%22Sensory+Experience%22">Sensory Experience</searchLink><br /><searchLink fieldCode="DE" term="%22Equipment%22">Equipment</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+Services%22">Medical Services</searchLink><br /><searchLink fieldCode="DE" term="%22Children%22">Children</searchLink><br /><searchLink fieldCode="DE" term="%22Autism+Spectrum+Disorders%22">Autism Spectrum Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Pediatrics%22">Pediatrics</searchLink><br /><searchLink fieldCode="DE" term="%22Emergency+Programs%22">Emergency Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Attitudes%22">Parent Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Satisfaction%22">Satisfaction</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1007/s10803-022-05651-7
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 0162-3257<br />1573-3432
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Children with autism spectrum disorder (ASD) have more frequent use of healthcare services, including visits to the emergency department (ED). Medical care for children with ASD can be adversely affected by the highly stimulating environment of the ED. In this study, we gained insights from stakeholders with lived experience (parents of children with ASD, children with ASD, and ED healthcare providers) to create and implement a sensory equipment kit. The kit was evaluated and iteratively improved based on observations of children using the sensory equipment, satisfaction surveys from their parents, and interviews with healthcare providers in the ED. Findings from this study can be used to guide other EDs in creating their own ASD sensory kit.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2023
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1390410
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1390410
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1007/s10803-022-05651-7
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 11
        StartPage: 3369
    Subjects:
      – SubjectFull: Sensory Experience
        Type: general
      – SubjectFull: Equipment
        Type: general
      – SubjectFull: Medical Services
        Type: general
      – SubjectFull: Children
        Type: general
      – SubjectFull: Autism Spectrum Disorders
        Type: general
      – SubjectFull: Pediatrics
        Type: general
      – SubjectFull: Emergency Programs
        Type: general
      – SubjectFull: Parent Attitudes
        Type: general
      – SubjectFull: Satisfaction
        Type: general
    Titles:
      – TitleFull: Designing a Sensory Kit to Improve the Environment for Children with Autism Spectrum Disorder in the Pediatric Emergency Department
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Litwin, Sasha
      – PersonEntity:
          Name:
            NameFull: Sellen, Kate
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 09
              Type: published
              Y: 2023
          Identifiers:
            – Type: issn-print
              Value: 0162-3257
            – Type: issn-electronic
              Value: 1573-3432
          Numbering:
            – Type: volume
              Value: 53
            – Type: issue
              Value: 9
          Titles:
            – TitleFull: Journal of Autism and Developmental Disorders
              Type: main
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