Tailored Environmental Modifications (TEM)
Director: Leah Stein Duker PhD, OTR/L
The Tailored Environmental Modifications (TEM) Lab focuses on the broad-ranging effects of environmental factors on stress, well-being, and activity engagement during challenging healthcare encounters, and the efficacy of TEM interventions to alleviate these challenges. Using a variety of quantitative, qualitative, and mixed methods research, the TEM Lab features highly interdisciplinary team science, bringing together collaborators from a diverse array of fields such as occupational therapy, dentistry, primary care, oncology, and engineering. Research in our lab focuses on the:
- identification of environmental barriers and facilitators to positive healthcare encounters; and
- development and evaluation of evidence-based TEM interventions to improve healthcare experiences for consumers and healthcare providers.
Current TEM Lab studies include the examination of healthcare encounters in children during dental care (those with autism, Down syndrome, and/or dental fear and anxiety), adults with autism at primary care visits, children with cancer during chemotherapy infusions, and children receiving treatment in the Emergency Department.
⋯
Sensory Adapted Dental Environments to Enhance Oral Care for Children with and without Dental Fear and Anxiety ⟩
Dental fear and anxiety (DFA) characterizes up to 42% of the pediatric population and predicts negative behaviors in the dental clinic, irregular appointment attendance, need for general anesthesia, and poor oral health. Sensory over-responsivity (SOR), which occurs in up to 33% of the pediatric…
Period: Apr 2022 – Mar 2029
Federal Funding $5,538,460 (anticipated)
Environmental Impact on Stress during Challenging Healthcare Encounters ⟩
To identify environmental barriers and facilitators during healthcare encounters, develop evidence-based interventions tailored environmental modification interventions to improve care experiences for consumers and healthcare providers, and examine the efficacy and effectiveness of these…
Period: Sep 2017 – Aug 2022
Federal Funding $250,076
Sensory Adapted Dental Environments to Enhance Oral Care for Children (SADE-2) ⟩
The SADE-2 study is a randomized clinical trial of 184 ethnically diverse children with autism spectrum disorder (ASD). We are investigating the efficacy of a sensory adapted dental environment (SADE) compared to a regular dental environment (RDE) to decrease children’s physiological anxiety,…
Period: May 2015 – Apr 2022
Federal Funding $3,783,021
Environmental Barriers and Facilitators for Adults with Autism Spectrum Disorder during Primary Care Health Encounters ⟩
To identify environmental barriers and facilitators during primary care health encounters for adults with autism spectrum disorder.
Period: Sep 2017 – Mar 2019
Private Funding $49,946
Environmental Factors and their Impact on Children Undergoing Chemotherapy Infusions ⟩
To identify environmental factors that influence the experience of stress during outpatient chemotherapy infusions by interviewing children with cancer, their parents, and their healthcare providers.
Period: Jul 2015 – Dec 2017
Private Funding $188,773
Environmental Predictors of Stress in Children Undergoing Chemotherapy Infusions ⟩
Children undergoing cancer treatment are at risk for adverse mental and physical health consequences due to repeated exposures to physical and/or psychological stressors. Although it is well documented that cancer therapies are stressful, there is a lack of data regarding the stress response during…
Period: Jul 2016 – Nov 2017
Intramural Funding $29,400
2023
Stein Duker, L. I., Como, D. H., Jolette, C., Vigen, C., Gong, C. L., Williams, M. E., Polido, J. C., Floríndez-Cox, L. I., & Cermak, S. A. (2023). Sensory adaptations to improve physiological and behavioral distress during dental visits in autistic children: A randomized crossover trial. JAMA Network Open, 6(6), e2316346. https://doi.org/10.1001/jamanetworkopen.2023.16346 Show abstract
Importance Autistic children have poorer oral health and greater oral care challenges, which are often associated with sensory overresponsivity, than neurotypical peers. It is important to identify innovative solutions enabling dentists to successfully perform standard clinic-based procedures for this population.
Objective To determine whether a sensory-adapted dental environment (SADE) reduces physiological and behavioral distress in autistic children undergoing dental cleanings, compared with a regular dental environment (RDE).
Design, Setting, and Participants This randomized crossover trial was conducted at a pediatric dentistry clinic in a large urban children’s hospital between May 2016 and April 2022. Coders were blinded to study condition for physiological but not behavioral measurements. Autistic children aged 6 to 12 years were identified and invited to participate. Interested families were enrolled consecutively; after confirmation of autism diagnosis, children were randomized. Analysis for this per-protocol study were conducted from April to October 2022.
Intervention Each child underwent 1 RDE and 1 SADE dental cleaning, administered in randomized and counterbalanced order approximately 6 months apart. SADE included modified visual, auditory, and tactile stimuli.
Main Outcomes and Measures The primary outcome was physiological stress, assessed by electrodermal activity. The secondary outcome was behavioral distress measured from video recordings.
Results Among 452 families invited to participate, 220 children were enrolled, and 162 children (mean [SD] age, 9.16 [1.99] years; 136 [84.0%] male) with confirmed autism were randomized, with 83 children receiving RDE first and 80 children receiving SADE first. Most children (94 children [58.0%]) had moderate autism severity. Children had significantly lower physiological stress during dental care in SADE compared with RDE (mean difference in skin conductance level, −1.22 [95% CI, −2.17 to −0.27] μS), suggesting decreased sympathetic activity and increased relaxation during SADE dental care. No significant differences were found in nonspecific skin conductance responses (mean difference, −0.30 [95% CI, −0.86 to 0.25] per min). Video-coded frequency and duration of behavioral distress (but not questionnaire) measures were significantly lower in SADE vs RDE (Cohen d = −0.84 to −1.19). Physiological stress was associated with behavioral distress during the dental cleaning (eg, nonspecific skin conductance responses associated with the Frankl Scale: β = −0.29; 95% CI, −0.39 to −0.19); age, IQ, and expressive communication moderated the intervention’s success. No participants withdrew due to adverse effects.
Conclusions and Relevance In this randomized crossover trial of autistic children, using SADE was safe and efficacious in decreasing physiological and behavioral distress during dental care. This is important because enhancing oral care is critical for autistic children; this intervention may also be beneficial for populations beyond autism.
Trial Registration ClinicalTrials.gov Identifier: NCT02430051
Isralowitz, E. B., Sideris, J., Stein Duker, L. I., Baranek, G. T., & Cermak, S. A. (2023). Comparing sensory processing in children with Down syndrome to a mental age matched sample of children with autism, other developmental disabilities, and typically developing children. Research in Developmental Disabilities, 134, 104421. https://doi.org/10.1016/j.ridd.2022.104421 Show abstract
Background. Atypical sensory processing impacts children with intellectual and developmental disabilities (IDD). Research has focused on SP in individuals with autism spectrum disorder (ASD); comparatively, little has been written regarding individuals with Down syndrome (DS) and IDDs.
Aims. We compared patterns of sensory processing in children with DS to children with ASD, other IDDs, and typically developing (TD) peers examining the relationship among different sensory processing measures.
Methods and procedures. We analyzed cross-sectional data using two caregiver questionnaires (SP, SEQ) and one observational measure (SPA). Groups were compared on three sensory processing patterns: hyporesponsiveness; hyperresponsiveness; and sensory interests, repetitions, and seeking (SIRS) via ANOVA. We assessed concordance through correlations.
Outcomes and results. Children with DS, IDD, and ASD demonstrated more atypical sensory processing behaviors than TD peers. Children with ASD exhibited the most atypical responses across all measures, significantly more than DS children on all but one subscale. The IDD and DS groups differed on several measures. Measurement concordance was higher between caregiver-report versus observational assessment.
Conclusions and implications. Differences between three clinical groups indicate that sensory processing features may differ across clinical populations regardless of cognitive functioning. Lower concordance between caregiver-report and observation measures highlights the need to understand sensory processing expression across different tasks and environments.
Stein Duker, L. I., & Franklin, M. D. (2023). Moderate- versus light-pressure massage therapy leads to greater weight gain in preterm infants. In E. A. Pyatak & E. S. Lee (Eds.), 50 studies every occupational therapist should know (pp. 223-228). Oxford, UK: Oxford University Press. https://doi.org/10.1093/med/9780197630402.003.0032 Show abstract
The objective of this study was to examine the application of moderate-pressure massage and kinesthetic stimulation versus light-pressure massage and kinesthetic stimulation on preterm infant behavioral states, heart rate/vagal tone, and weight. Preterm infants (n = 68; M gestational age = 30 weeks) in the neonatal intensive care unit (NICU) were randomly assigned to a moderate- or light-pressure massage therapy plus kinesthetic stimulation condition, receiving massages three times per day for 15 minutes each for 5 consecutive days. Infants who received moderate-pressure massage therapy demonstrated significant improvements in behavioral states (e.g., active sleep, fussing, crying, movement, stress behavior), deep sleep, heart rate/vagal tone, and weight gain compared to the light-pressure massage therapy group. Overall, the data indicate that providing moderate-pressure massage therapy and kinesthetic stimulation has the potential to improve outcomes for stable preterm infants in the NICU.
Keywords. occupational therapy, massage therapy, preterm infant, weight gain, vagal tone, tactile-kinesthetic stimulation
2022
Como, D. H., Floríndez-Cox, L. I., Stein Duker, L. I., & Cermak, S. A. (2022). Oral health barriers for African American caregivers of autistic children. International Journal of Environmental Research and Public Health, 19(24), 17067. https://doi.org/10.3390/ijerph192417067 Show abstract
The most persistent oral health disparities in the United States impact children from racial and ethnic minoritized groups and children diagnosed as autistic. This paper aims to describe barriers to oral care as depicted by Black/African American (B/AA) parents of autistic children to further explore how and why oral health disparities persist in this population. A purposeful sample of eleven caregivers of autistic children, ages 4 to 14 years, who identified as B/AA were interviewed twice for approximately 60–90 min each. Thematic analysis utilizing a narrative approach was employed. Three themes emerged from the data concerning the barriers that affect oral health experiences: (a) difficulty in maintaining good oral health practices, (b) challenges with access to care and resources, and (c) poor patient-provider relationships. Due to the limited research that examines the intersection of autism, B/AA culture, and oral health practices, this study provides a rich picture of the barriers families face when obtaining oral care. Many families raised issues that other parents of autistic children also identified. B/AA caregivers have demonstrated that despite their own negative dental experiences, they understand the value of good oral care practices and are willing to pursue oral care for their children.
Keywords. oral health; autism; African American; barriers; health equity; children
Stein Duker, L. I., Goodman, E., Pomponio Davidson, A., & Mosqueda, L. (2022). Caregiver perspectives on barriers and facilitators to primary care for autistic adults: A qualitative study. Frontiers in Medicine, 9, 1022026. https://doi.org/10.3389/fmed.2022.1022026 Show abstract
Background. Primary care is associated with greater access to healthcare services and improved health outcomes. However, autistic adults report challenges accessing and utilizing primary care, in addition to unmet healthcare needs. The need to minimize existing barriers and identify strategies to facilitate successful healthcare encounters is increasingly important as autistic adults represent a growing segment of society. Minimal research has examined primary healthcare encounters for this population.
Methods. As part of a larger convergent parallel design mixed-methods study that recruited autistic adults, caregivers of autistic adults, and primary care providers treating autistic adults, interviews were conducted with 31 caregivers of autistic adults. Caregivers were predominantly female (94%), and the autistic adult they cared for were primarily male (87%), with a mean age of 24 years. Thematic analysis was employed to elucidate the barriers to care, suggestions to mitigate challenges, and/or successful strategies implemented during care encounters for autistic adults, as reported by their caregivers.
Results. Reported here are the results only from the caregiver interviews, in which seven themes emerged: (1) finding a primary care provider; (2) patient-provider communication; (3) anxiety due to unpredictability, an overstimulating sensory environment, and waiting time; (4) participation of consumers in the healthcare process; (5) stigma and assumptions about autism; (6) caregiver experiences; and (7) the impact of culture and ethnicity on care.
Conclusion. Findings from this study have the potential to inform the development of, or improve existing, client-centered interventions to improve primary healthcare services for autistic adults.
Como, D. H., Floríndez-Cox, L. I., Stein Duker, L. I., Polido, J. C., Jones, B. P., Lawlor, M., & Cermak, S. A. (2022). Oral care knowledge, attitudes, and practices of Black/African American caregivers of autistic children and non-autistic children. Children, 9(9), 1417. https://doi.org/10.3390/children9091417 Show abstract
Oral health is a vital component of overall health. Children from underserved, minoritized populations (i.e., Black/African Americans, autistic children) are at even greater risk for experiencing oral health disparities. This study aims to illuminate the oral health knowledge, attitudes, and practices of Black/African American caregivers of autistic and non-autistic children. Black/African American caregivers of children (4-to-14 years) on the autism spectrum (n = 65) or not on the autism spectrum (n = 60), participated in a survey, with input from literature reviews, interviews, previous research, and reviews by experts. Caregivers demonstrated basic knowledge of oral health with significantly lower scores for caregivers of autistic children. Caregivers care about oral health and would like to increase their knowledge. Significant differences in oral care practices were found between the autistic and non-autistic groups. Caregivers reported they can access dental services with relative ease, including finding their child a dentist, scheduling a dental appointment, and accessing transportation (personal or public) to attend the visit. Black/African American caregivers of autistic children and children without autism seem to have foundational knowledge about oral health and basic practices; however, they are interested in learning more. Therefore, tailored oral health education programs may help mitigate oral health disparities for Black/African American families.
Keywords. autism; African Americans; oral health; health equity; children
Stein Duker, L. I., Martinez, M., Lane, C. J., Polido, J. C., & Cermak, S. A. (2022). Association between oral care challenges and sensory over-responsivity in children with Down syndrome. International Journal of Paediatric Dentistry, 32(4), 546-557. https://doi.org/10.1111/ipd.12933 Show abstract
Background. Sensory over-responsivity has been linked to oral care challenges in children with special healthcare needs. Parents of children with Down syndrome (cDS) have reported sensory over-responsivity in their children, but the link between this and oral care difficulties has not been explored.
Aim. Investigate relationship between sensory over-responsivity and oral care challenges in cDS.
Design. Online survey examined parent-report responses describing their cDS’s oral care (5-14yrs; n=367); children were categorized as sensory over-responders (SORs) or sensory not over-responders (SNORs). Chi-square analyses tested associations between groups (SORs vs. SNORs) and dichotomous oral care variables.
Results. More parents of SOR children, compared to SNOR, reported that: child behavior (SOR:86%, SNOR:77%; p<.05) and sensory sensitivities (SOR:34%, SNOR:18%; p<.001) make dental care challenging, their child complains about ≥3 types of sensory stimuli encountered during care (SOR:39%, SNOR:28%; p=.04), their dentist is specialized in treating children with special needs (SOR:45%, SNOR:33%; p=.03), and their child requires full assistance to brush teeth (SOR:41%, SNOR:28%; p=.008). No group differences were found in items examining parent-reported oral health or care access.
Conclusions. Parents of SOR children report greater challenges than parents of SNOR children at the dentist and in the home, including challenging behaviors and sensory sensitivities.
Stein Duker, L. I., Grager, M., Giffin, W., Hikita, N., & Polido, J. C. (2022). The relationship between dental fear and anxiety, general anxiety/fear, sensory over-responsivity, and oral health behaviors and outcomes: A conceptual model. International Journal of Environmental Research and Public Health, 19(4), 2380. https://doi.org/10.3390/ijerph19042380 Show abstract
Dental fear and anxiety (DFA) is common across the lifespan and represents a barrier to proper oral health behaviors and outcomes. The aim of this study is to present a conceptual model of the relationships between DFA, general anxiety/fear, sensory over-responsivity (SOR), and/or oral health behaviors and outcomes. Two rounds of literature searches were performed using the PubMed database. Included articles examined DFA, general anxiety/fear, SOR, catastrophizing, and/or oral health behaviors and outcomes in typically developing populations across the lifespan. The relationships between the constructs were recorded and organized into a conceptual model. A total of 188 articles were included. The results provided supporting evidence for relationships between DFA and all other constructs included in the model (general anxiety/fear, SOR, poor oral health, irregular dental attendance, dental behavior management problems [DBMP], and need for treatment with pharmacological methods). Additionally, SOR was associated with general anxiety/fear and DBMP; general anxiety/fear was linked to poor oral health, irregular attendance, and DBMP. This model provides a comprehensive view of the relationships between person factors (e.g., general anxiety/fear, SOR, and DFA) and oral health behaviors and outcomes. This is valuable in order to highlight connections between constructs that may be targeted in the development of new interventions to improve oral health behaviors and outcomes as well as the experience of DFA.
Keywords. dental anxiety; dental fear; oral health behaviors; general anxiety; sensory over-responsivity; dental behavior management problems
Bodison, S. C., Stein Duker, L. I., Nakasuji, B., Gabriele, M., & Blanche, E. I. (2022). Occupational therapy for children with autism spectrum disorder and intellectual and developmental disability. In P. McPherson (Ed.), Handbook of treatment planning for children with autism and other neurodevelopmental disorders (pp. 389-398). Switzerland: Springer.
Chi, D. L., & Stein Duker, L. I. (2022). Oral health treatment planning: Dental disease prevention and oral health promotion for children with autism spectrum disorder and developmental disabilities. In P. McPherson (Ed.), Handbook of treatment planning for children with autism and other neurodevelopmental disorders (pp. 147-164). Switzerland: Springer.
2021
Stein Duker, L. I., Schmidt, A. R., Pham, P. K., Ringold, S. M., & Nager, A. L. (2021). Use of audiobooks as an environmental distractor to decrease state anxiety in children waiting in the pediatric emergency department: A pilot and feasibility study. Frontiers in Pediatrics, 8, 556805. https://doi.org/10.3389/fped.2020.556805 Show abstract
Objectives. Anxiety and anticipatory stressors are commonly experienced by children visiting the Pediatric Emergency Department (PED), but little research exists that addresses the efficacy of interventions to decrease this stress. This one-sample pretest-postest pilot study gathered preliminary data on the feasibility and effectiveness of utilizing audiobooks to reduce fear and state anxiety in children in the PED.
Methods. Participants were 131 children in kindergarten through 8th grade (M = 9.4 years, 54% female), triaged urgent or emergent, presenting to the PED. Participants self-reported fear (Children's Fear Scale) and state anxiety (modified State-Trait Anxiety Inventory for Children; mSTAIC) before and after listening to an age-appropriate audiobook (two options). Data regarding patient experience were also collected. Paired samples t-test was used to examine pre–post intervention changes in fear and state anxiety.
Results. Significant, albeit small, improvements in fear and the mSTAIC states of nervous, calm, happy, and relaxed were found after use of the audiobook (Cohen's dz = 0.22–0.35). Small, yet significant correlations were found between child age/grade level and improvements in fear and in the mSTAIC states of scared and relaxed, suggesting that the audiobook was more beneficial for older participants. Over 60% of participants liked the audiobook content “a lot” as well as enjoyed listening to the audiobook “a lot.” Without prompting, 15% of participants requested to listen to an additional audiobook.
Conclusions. Listening to an audiobook is feasible and could be effective in decreasing fear and state anxiety for children during a waiting period in the PED. The technology is low-cost, simple, and portable. The results of this study should be interpreted with prudence due to the lack of a control group and results that, although significant, were modest based on effect size conventions; future studies should explore the impact of audiobooks on patient stress with an expanded sample size and control group.
Keywords. distraction, environment, pediatrics, audiobook, fear, state anxiety, emergency department (ED)
Piller, A., Saa, M. P., Tremino, I., Koester, A. C., & Stein Duker, L. I. (2021). Using technology to enhance sensory-based interventions. AOTA Sensory Integration Special Interest Section, 6(1), 2-4.
Como, D. H., Stein Duker, L. I., Polido, J. C., & Cermak, S. A. (2021). Oral health and autism spectrum disorders: A unique collaboration between dentistry and occupational therapy. International Journal of Environmental Research and Public Health, 18(1), 135. https://doi.org/10.3390/ijerph18010135 Show abstract
Children with autism spectrum disorders (ASD) are at risk for oral health disparities. With the dramatic rise in ASD prevalence to 1 in 54 children, it is likely that an increasing number of dental practitioners will encounter or be asked to treat children with ASD. This paper reviews explanations related to the increasing prevalence of ASD, provides reasons why children with ASD are at increased risk for poor oral health, and discusses unique interprofessional collaborations between dental practitioners and occupational therapists. Occupational therapists and dentists can work together to plan modifications to the dental environment or adapt dental protocols to reduce some of the barriers encountered by those with ASD, provide desensitization strategies before the clinic visit, or help a child with emotional regulation during clinical treatments.
Keywords. autism spectrum disorder; dentistry; interprofessional collaboration; occupational therapy; oral health
2020
Stein Duker, L. I., Richter, M., Lane, C. J., Polido, J. C., & Cermak, S. A. (2020). Oral care experiences and challenges for children with Down syndrome: Reports from caregivers. Pediatric Dentistry, 42(6), 430-435. Full text Show abstract
Purpose. The purpose of this study was to investigate the oral care experiences and challenges encountered by children with Down syndrome.
Methods. Participants were 372 parents of five- to 14-year-olds with Down syndrome. Parents completed a 48-item questionnaire designed by the authors to elicit information about oral care in the home and dental office. Descriptive statistics were used to examine oral care variables.
Results. Parents reported difficulty across almost all oral care variables, including oral care in the home, oral care at the dentist, and access to oral care. Approximately one-third of parent respondents reported that toothbrushing was difficult and brushing occurred four or fewer days a week. Over half of the respondents reported that it was difficult to have a dental professional clean their child's teeth, uncooperative behaviors and sensory sensitivities increased in the office, and those behaviors and sensitivities made care challenging. Most respondents reported having a dental home for their child, that it was difficult locating their dentist, and that finances limited visits.
Conclusions. Children with Down syndrome experience difficulties and barriers to care in both the home and dental office settings.
Floríndez, L. I., Floríndez, D. C., Como, D. H., Secola, R., & Stein Duker, L. I. (2020). Differing interpretations of health care encounters: A qualitative study of non-Latinx health care providers’ perceptions of Latinx patient behaviors. PLoS ONE, 15(8), e0236706. https://doi.org/10.1371/journal.pone.0236706 Show abstract
Introduction. Due to provider shortages, it is probable that non-Latinx health care providers (HCPs) will treat Latinx patients. Because of this discrepancy, both providers and patients are likely to experience barriers and cultural differences during medical encounters. This article discusses select cultural factors and behaviors such as language, communication styles, and health care practices of Latinx families through the lens of their non-Latinx HCPs. The purpose of this study was to examine how non-Latinx HCPs perceive and describe certain behaviors they observe during healthcare visits with Latinx patients and families, and to illustrate how those behaviors can alternatively be interpreted as representing Latinx cultural norms.
Methods. This qualitative study used a template coding approach to examine narrative interviews conducted with 18 non-Latinx HCPs to report how they described interactions with and the behaviors of their Latinx patients. Template codes were based on well-established Latinx cultural norms (e.g., familismo, respeto, personalismo, simpatía, confianza).
Results. Many HCP descriptions of Latinx patient behaviors were coded into the Latinx cultural values categories (familismo, personalismo, simpatía, respeto, and confianza) by the research team. Results suggest that HCPs were not aware of how several of their patients’ behaviors may be culturally grounded, and that cultural differences between HCPs and their Latinx patients may exist.
Discussion. Understanding how Latinx-specific cultural norms may be exhibited by Latinx patients and their families during healthcare encounters has potential to improve providers’ understanding of patient behavior, helping to promote culturally congruent care for Latinxs.
Gomes, G. P. R., Rubin, S., Stein Duker, L. I., Benton, D., Kratky, A., Chen, S. Y. A., Jordan-Marsh, M., & Gotsis, M. (2020). Healing spaces: feasibility of a multisensory experience for older adults with advanced dementia and their caregivers. Proceedings of the 13th ACM International Conference on PErvasive Technologies Related to Assistive Environments (PETRA), Article 24, 1–9. https://doi.org/10.1145/3389189.3392607 Show abstract
Healing Spaces proposes a new approach to multisensory interventions that show potential in ameliorating the behavioral and psychological symptoms of advanced dementia in older adults. Using smart technology, the project combines both digital and physical components to transform spaces and create unified, curated sensory experiences that provide meaningful context for interaction, and are easy for caregivers to deliver. A usability study was conducted for the Healing Spaces app followed by a feasibility evaluation of the full experience in a memory care facility recruiting caregivers, and residents in advanced stages of dementia. The feasibility evaluation successfully illuminated strengths as well as areas for improvement for the Healing Spaces experience in a memory care setting with older adults with advanced dementia. Caregivers and facility managers expressed interest in continuing to use Healing Spaces with the residents of the facility. Lessons learned about the technical and logistical implementation of Healing Spaces are discussed, as well as future directions for study design and potential therapeutic value of the experience.
Como, D. H., Floríndez, L. I., Tran, C. F., Cermak, S. A., & Stein Duker, L. I. (2020). Examining unconscious bias embedded in provider language regarding children with autism. Nursing and Health Sciences, 22(2), 197-204. https://doi.org/10.1111/nhs.12617 Show abstract
In healthcare settings, language used by healthcare providers can influence provider–patient encounters with individuals with autism spectrum disorder, impacting feelings of stigma and marginalization. This study highlights the unconscious biases healthcare providers might have regarding their patients with autism spectrum disorder and how those beliefs are articulated. Seven pediatric dentists participated in two focus groups to describe strategies to improve oral care for children with autism spectrum disorder. While completing the primary analyses, additional codes emerged related to healthcare provider biases; these data are the focus of this study. Three themes were identified: (i) “healthcare microaggressions” describe how healthcare providers portray their patients in subtly negative ways; (ii) “marginalization” denotes the use of exclusionary language identifying children with autism spectrum disorder as different; and (iii) “preconceptions” include comments that highlight biases about patients. The findings provide insight into the implicit biases that might be held by healthcare providers and how they manifest in language. Despite increased emphasis on cultural competency, healthcare providers might unconsciously use language that could negatively impact patient–provider rapport and increase stigma in already marginalized populations. Further research is necessary to explore how these biases could relate to quality of care.
2019
Pfeiffer, B., Stein Duker, L., Murphy, A., & Shui, C. (2019). Effectiveness of noise-attenuating headphones on physiological responses for children with autism spectrum disorders. Frontiers in Integrative Neuroscience, 13(65), 1-14. https://doi.org/10.3389/fnint.2019.00065 Show abstract
Objective. The purpose of this study was to evaluate the proof of concept of an intervention to decrease sympathetic activation as measured by skin conductivity (electrodermal activity, EDA) in children with an autism spectrum disorder (ASD) and auditory hypersensitivity (hyperacusis). In addition, researchers examined if the intervention provided protection against the negative effects of decibel level of environmental noises on electrodermal measures between interventions. The feasibility of implementation and outcome measures within natural environments were evaluated.
Method. A single-subject multi-treatment design was used with six children, aged 8–16 years, with a form of Autism (i.e., Autism, PDD-NOS). Participants used in-ear (IE) and over-ear (OE) headphones for two randomly sequenced treatment phases. Each child completed four phases: (1) a week of baseline data collection; (2) a week of an intervention; (3) a week of no intervention; and (4) a week of the other intervention. Empatica E4 wristbands collected EDA data. Data was collected on 16–20 occasions per participant, with five measurements per phase.
Results. Separated tests for paired study phases suggested that regardless of intervention type, noise attenuating headphones led to a significance difference in both skin conductance levels (SCL) and frequency of non-specific conductance responses (NS-SCRs) between the baseline measurement and subsequent phases. Overall, SCL and NS-SCR frequency significantly decreased between baseline and the first intervention phase. A protective effect of the intervention was tested by collapsing intervention results into three phases. Slope correlation suggested constant SCL and NS-SCR frequency after initial use of the headphones regardless of the increase in environmental noises. A subsequent analysis of the quality of EDA data identified that later phases of data collection were associated with better data quality.
Conclusion. Many children with ASD have hypersensitivities to sound resulting in high levels of sympathetic nervous system reactivity, which is associated with problematic behaviors and distress. The findings of this study suggest that the use of noise attenuating headphones for individuals with ASD and hyperacusis may reduce sympathetic activation. Additionally, results suggest that the use of wearable sensors to collect physiological data in natural environments is feasible with established protocols and training procedures.
Stein Duker, L. I., Kim, H. K. S., Pomponio, A., Mosqueda, L., & Pfeiffer, B. (2019). Examining primary care health encounters for adults with autism spectrum disorder. American Journal of Occupational Therapy, 73(5), 7305185030p1-7305185030p11. https://doi.org/10.5014/ajot.2019.037226 Show abstract
Objective. Our objective was to identify perceived barriers and strategies to improve primary care encounters, as reported by adults with autism spectrum disorder (ASD), caregivers of adults with ASD, and primary care providers (PCPs) treating adults with ASD.
Method. As part of a larger mixed-methods design, adults with ASD, caregivers, and PCPs (N = 78) in Los Angeles and Philadelphia completed surveys examining barriers to care and strategies to improve care.
Results. Multiple barriers to care were reported by adults with ASD and caregivers, including communication and sensory challenges. Adults with ASD and caregivers reported minimal use of strategies during primary care visits but indicated that those used were helpful during care. Expert PCPs reported using strategies more frequently than novice PCPs. All respondent groups endorsed that strategies had the potential to improve care in the future for adults with ASD.
Conclusion. Opportunities exist for occupational therapy collaboration in primary health care and primary care education to improve care for adults with ASD.
Como, D. H., Stein Duker, L. I., Polido, J. C., & Cermak, S. A. (2019). The persistence of oral health disparities for African American children: A scoping review. International Journal of Environmental Research and Public Health, 16(5), 710. https://doi.org/10.3390/ijerph16050710 Show abstract
Oral health is an important yet often neglected component of overall health, linked to heart disease, stroke, and diabetic complications. Disparities exist for many groups, including racial and ethnic minorities such as African Americans. The purpose of this study was to examine the potential factors that perpetuate oral health care disparities in African American children in the United States. A systematic search of three literature databases produced 795 articles; 23 articles were included in the final review. Articles were analyzed using a template coding approach based on the social ecological model. The review identified structural, sociocultural, and familial factors that impact the ability of African Americans to utilize oral care services, highlighting the importance of the parent/caregiver role and the patient–provider relationship; policy-level processes that impact access to quality care; the value of autonomy in treatment and prevention options; and the impact of sociocultural factors on food choices (e.g., food deserts, gestures of affection). In conclusion, oral health care remains an underutilized service by African American children, despite increasing access to oral care secondary to improvements in insurance coverage and community-based programs.
Stein Duker, L. I., Floríndez, L. I., Como, D. H., Tran, C. F., Henwood, B. F., Polido, J. C., & Cermak, S. A. (2019). Strategies for success: A qualitative study of caregiver and dentist approaches to improving oral care for children with autism. Pediatric Dentistry, 41(1), 4E-12E. Show abstract
Purpose. Oral health is important to physical and psychological health. Individuals with autism spectrum disorder (ASD) experience significant oral care challenges, but little research exists that examines efficacious interventions to improve care. The purpose of this study was to qualitatively explore parental and dentist reports of successful strategies implemented during dental care with children with ASD.
Methods. Focus groups were conducted with parents of children with ASD (N = two groups) and dentists treating children with ASD (N = two groups). Focus group transcripts were transcribed verbatim and analyzed using a thematic analysis approach.
Results. Three key themes were identified from the parent focus groups: (1) what makes a good dentist; (2) flexibility and techniques—strategies used by the dentist; and (3) preparation—strategies for parents and caregivers of children with ASD. Four themes emerged from the dentist groups: (1) parents know best; (2) practice; (3) flexibility; and (4) a network of colleagues. Areas of overlap between the parents and dental providers included the importance of preparation, necessity of flexibility and creativity, and value of collaboration.
Conclusions. Our findings provide insight into techniques perceived by parents and dental providers to facilitate successful dental encounters for children with ASD.
Stein Duker, L. I. (2019). Adapting oral care protocols to support children with sensory sensitivities: Occupational therapy and dentistry. In T. Nelson & J. R. De Bord (Eds.), Dental care for children with special needs: A clinical guide (pp. 77-98). Switzerland: Springer.
2018
Chaspari, T., Metallinou, A., Stein Duker, L. I., & Behzadan, A. (2018). Human-Habitat for Health (H3): Human-habitat multimodal interaction for promoting health and well-being in the Internet of Things era. In ICMI '18: Proceedings of the 20th ACM International Conference on Multimodal Interaction (pp. 664-665). https://doi.org/10.1145/3242969.3265862 Show abstract
This paper presents an introduction to the "Human-Habitat for Health (H3): Human-habitat multimodal interaction for promoting health and well-being in the Internet of Things era" workshop, which was held at the 20th ACM International Conference on Multimodal Interaction on October 16th, 2018, in Boulder, CO, USA. The main theme of the workshop focused on the effect of the physical or virtual environment on individual's behavior, well-being, and health. The H3 workshop included keynote speeches that provided an overview and future directions of the field, as well as presentations including position papers and research contributions. The workshop brought together experts from academia and industry spanning a set of multi-disciplinary fields, including computer science, speech and spoken language understanding, construction science, life-sciences, health sciences, and psychology, to discuss their respective views and identify synergistic and converging research directions and solutions.
Hong, E. Y., Cermak, S. A., & Stein Duker, L. I. (2018). Occupational therapists’ role in creating a sensory friendly waiting room to enhance healthcare experiences. AOTA Sensory Integration Special Interest Section, 3, 11–13.
2017
Stein Duker, L. I., Henwood, B. F., Bluthenthal, R. N., Juhlin, E., Polido, J. C., & Cermak, S. A. (2017). Parents’ perceptions of dental care challenges in male children with autism spectrum disorder: An initial qualitative exploration. Research in Autism Spectrum Disorders, 39, 63-72. https://doi.org/10.1016/j.rasd.2017.03.002 Show abstract
Background. Many children with autism spectrum disorders (ASD) experience barriers to oral care in the dental office setting. The purpose of this study was to provide an increased understanding of these challenges experienced during oral care in the dental office by children with ASD.
Method. This study was part of a larger mixed methods design and builds on quantitative results from a survey of parents of children with ASD ages 2–18 in which parents reported difficulties with access to care, sensory processing, and uncooperative behaviors. For this study, we conducted two, three hour, focus groups of parents of male children with ASD age 5–18 years in order to explore the survey results in greater depth. Focus group transcripts were analyzed using a template coding approach based on the three domains of office-based oral care challenges identified in the first phase (survey).
Results. Several related themes emerged including: (1) Access: “Difficult to find the right dentist”, (2) Sensory sensitivities: “All the sensory devices just make him so uncomfortable”, (3) Restraint: “It looked like they were torturing him”, and (4) Drugs: “A mixed bag”.
Conclusions. The qualitative findings from this study both confirmed our previous survey findings and expanded upon them. These findings can help professionals better understand the challenges experienced by children with ASD and their parents as well as help identify priorities for planning efforts to address the oral health-related needs of this population.
2016
Chaspari, T., Tsiartas, A., Stein Duker, L. I., Cermak, S. A., & Narayanan, S. S. (2016). EDA-gram: Designing electrodermal activity fingerprints for visualization and feature extraction. In Proceedings of the 2016 38th Annual International Conference of the IEEE Engineering in Medicine and Biology Society (EMBC) (pp. 403-406). https://doi.org/10.1109/EMBC.2016.7590725 Show abstract
Wearable technology permeates every aspect of our daily life increasing the need of reliable and interpretable models for processing the large amount of biomedical data. We propose the EDA-Gram, a multidimensional fingerprint of the electrodermal activity (EDA) signal, inspired by the widely-used notion of spectrogram. The EDA-Gram is based on the sparse decomposition of EDA from a knowledge-driven set of dictionary atoms. The time axis reflects the analysis frames, the spectral dimension depicts the width of selected dictionary atoms, while intensity values are computed from the atom coefficients. In this way, EDA-Gram incorporates the amplitude and shape of Skin Conductance Responses (SCR), which comprise an essential part of the signal. EDA-Gram is further used as a foundation for signal-specific feature design. Our results indicate that the proposed representation can accentuate fine-grain signal fluctuations, which might not always be apparent through simple visual inspection. Statistical analysis and classification/regression experiments further suggest that the derived features can differentiate between multiple arousal levels and stress-eliciting environments for two datasets.
Pfeiffer, B., & Stein Duker, L. I. (2016). The impact of the sensory environment on patient care for individuals with autism spectrum disorders. In E. Giarelli & K. M. Fisher (Eds.), Integrated health care for people with autism spectrum disorder: Interdisciplinary planning and delivery of care (pp. 69-92). Springfield, IL: Charles C. Thomas.
2015
Cermak, S. A., Stein Duker, L. I., Williams, M. E., Dawson, M. E., Lane, C. J., & Polido, J. C. (2015). Sensory adapted dental environments to enhance oral care for children with autism spectrum disorders: A randomized controlled pilot study. Journal of Autism and Developmental Disorders, 45(9), 2876-2888. https://doi.org/10.1007/s10803-015-2450-5 Show abstract
This pilot and feasibility study examined the impact of a sensory adapted dental environment (SADE) to reduce distress, sensory discomfort, and perception of pain during oral prophylaxis for children with autism spectrum disorder (ASD). Participants were 44 children ages 6-12 (n = 22 typical, n = 22 ASD). In an experimental crossover design, each participant underwent two professional dental cleanings, one in a regular dental environment (RDE) and one in a SADE, administered in a randomized and counterbalanced order 3-4 months apart. Outcomes included measures of physiological anxiety, behavioral distress, pain intensity, and sensory discomfort. Both groups exhibited decreased physiological anxiety and reported lower pain and sensory discomfort in the SADE condition compared to RDE, indicating a beneficial effect of the SADE.
Cermak, S. A., Stein Duker, L. I., Williams, M. E., Lane, C. J., Dawson, M. E., Borreson, A. E., & Polido, J. C. (2015). Feasibility of a sensory-adapted dental environment for children with autism. American Journal of Occupational Therapy, 69(3), 6903220020p1-6903220020p10. https://doi.org/10.5014/ajot.2015.013714 Show abstract
Objective. To provide an example of an occupational therapy feasibility study and evaluate the implementation of a randomized controlled pilot and feasibility trial examining the impact of a sensory-adapted dental environment (SADE) to enhance oral care for children with autism spectrum disorder (ASD).
Method. Twenty-two children with ASD and 22 typically developing children, ages 6-12 yr, attended a dental clinic in an urban hospital. Participants completed two dental cleanings, 3-4 mo apart, one in a regular environment and one in a SADE. Feasibility outcome measures were recruitment, retention, accrual, dropout, and protocol adherence. Intervention outcome measures were physiological stress, behavioral distress, pain, and cost.
Results. We successfully recruited and retained participants. Parents expressed satisfaction with research study participation. Dentists stated that the intervention could be incorporated in normal practice. Intervention outcome measures favored the SADE condition.
Conclusion. Preliminary positive benefit of SADE in children with ASD warrants moving forward with a large-scale clinical trial.
Chaspari, T., Tsiartas, A., Stein, L. I., Cermak, S. A., & Narayanan, S. S. (2015). Sparse representation of electrodermal activity with knowledge-driven dictionaries. IEEE Transactions on Bio-Medical Engineering, 62(3), 960-971. https://doi.org/10.1109/TBME.2014.2376960 Show abstract
Biometric sensors and portable devices are being increasingly embedded into our everyday life, creating the need for robust physiological models that efficiently represent, analyze, and interpret the acquired signals. We propose a knowledge-driven method to represent electrodermal activity (EDA), a psychophysiological signal linked to stress, affect, and cognitive processing. We build EDA-specific dictionaries that accurately model both the slow varying tonic part and the signal fluctuations, called skin conductance responses (SCR), and use greedy sparse representation techniques to decompose the signal into a small number of atoms from the dictionary. Quantitative evaluation of our method considers signal reconstruction, compression rate, and information retrieval measures, that capture the ability of the model to incorporate the main signal characteristics, such as SCR occurrences. Compared to previous studies fitting a predetermined structure to the signal, results indicate that our approach provides benefits across all aforementioned criteria. This paper demonstrates the ability of appropriate dictionaries along with sparse decomposition methods to reliably represent EDA signals and provides a foundation for automatic measurement of SCR characteristics and the extraction of meaningful EDA features.
2014
Stein, L. I., Lane, C. J., Williams, M. E., Dawson, M. E., Polido, J. C., & Cermak, S. A. (2014). Physiological and behavioral stress and anxiety in children with autism spectrum disorders during routine oral care. BioMed Research International, 2014, 694876. https://doi.org/10.1155/2014/694876 Show abstract
Background. Children with autism spectrum disorders (ASD) commonly exhibit uncooperative behaviors which impede oral care. Previous studies have utilized dentist-report measures of uncooperative behaviors in children with ASD but none have utilized an objective measure of children's behavior or a physiological measure of distress. This study investigated behavioral and physiological distress in children with ASD during routine oral care and examined factors associated with this distress.
Methods. Participants were 44 children (typical, ASD) aged 6-12 receiving routine dental cleanings. Behavioral and physiological measures of stress and anxiety were collected during dental cleaning.
Results. Children with ASD exhibited greater distress, compared to the typical group, on dentist-report and researcher-coded measures of overt distress behaviors and on physiological measures. Correlations between physiological and behavioral measures of distress were found in the ASD but not in the typical group. Behavioral distress was correlated with age in the typical group and with expressive communication ability and sensory processing difficulties in the ASD group; physiological distress was correlated with parent-report of anxiety in the typical group and sensory processing difficulties in the ASD group.
Conclusions. Novel strategies may be required to decrease behavioral and physiological distress in children with ASD in the dental clinic.
2013
Stein, L. I., Polido, J. C., & Cermak, S. A. (2013). Oral care and sensory over-responsivity in children with autism spectrum disorders. Pediatric Dentistry, 35(3), 230-235. Full text Show abstract
Purpose. The purpose of this study was to investigate the relationship between sensory sensitivities and oral care difficulties in children with autism spectrum disorders (ASDs) or typical development (TD).
Methods. Participants included 396 parents of 2- to 18-year-old children with ASDs or TD who completed a questionnaire about oral care in the home and dental office. Descriptive and bivariate analyses were conducted to examine the association between sensory sensitivities and oral care variables.
Results. Both hypotheses were supported: (1) ASDs children vs. TD children were reported to have a significantly greater prevalence of sensory over-responsivity across all sensory domains; and (2) ASDs children characterized as "sensory over-responders" exhibited a significantly greater prevalence of oral care difficulty in the home and dental office vs. ASDs children who responded more typically to sensory stimuli ("sensory not over-responders").
Conclusions. This study provides further evidence for the impact of sensory processing problems on oral care, both in the home and dental office. Methods to best serve children with autism spectrum disorders may include strategies that alter the sensory characteristics of the dental environment as well as interventions to reduce children's sensory sensitivities.
2012
Stein, L. I., Polido, J. C., Najera, S. O., & Cermak, S. A. (2012). Oral care experiences and challenges in children with autism spectrum disorders. Pediatric Dentistry, 34(5), 387-391. Full text Show abstract
Purpose. The purpose of this study was to investigate the differences between children with autism spectrum disorders (ASD) and their typically developing peers in relation to aspects of oral care.
Methods. Participants included 396 parents of ASD children or typically developing 2- to 18-year-olds. Parents completed a 37-item questionnaire designed by authors to elicit information about oral care in the home and dental office. Descriptive, bivariate, and multivariate regression analyses were conducted to examine the association between diagnostic group and oral care variables.
Results. Significantly more parents of ASD children than parents of typically developing children reported difficulty across almost all oral care variables explored, including oral care in the home, oral care at the dentist, and access to oral care. Following multivariate regression to control for possible confounders—including age, gender, Hispanic status, and paternal education level—all previously significant variables remained significant.
Conclusion. This study indicates that children with autism spectrum disorders experience greater difficulties and barriers to care in both the home and dental office settings than their typically developing peers.
Stein, L. I., Polido, J. C., & Cermak, S. A. (2012). Oral care and sensory concerns in autism [Brief report]. American Journal of Occupational Therapy, 66(5), e73-e76. https://doi.org/10.5014/ajot.2012.004085 Show abstract
We examined sensory-related aspects of oral care at home and the dentist’s office in children with autism spectrum disorders (ASD) and their typically developing (TD) peers. Results from parent questionnaires (n = 196 ASD, n = 202 TD) and one focus group were analyzed to determine whether sensory experiences were different between groups. Significantly more parents of children with ASD reported difficulties with sensory-related oral care variables in the home and dental office; this finding was supported by qualitative data. Using sensory strategies to modify the environment may enhance the dental experience and improve quality of life for children with ASD and their families.
2011
Stein, L. I., Polido, J. C., Mailloux, Z., Coleman, G. G., & Cermak, S. A. (2011). Oral care and sensory sensitivities in children with autism spectrum disorders. Special Care in Dentistry, 31(3), 102-110. https://doi.org/10.1111/j.1754-4505.2011.00187.x Show abstract
Children with autism spectrum disorders (ASD) are at high risk for oral disease. The aim of this study was to examine the contribution of sensory processing problems to challenges in receiving oral care for children with ASD. A questionnaire was sent to the parents of 206 children with disabilities to test the hypotheses that children with ASD, relative to children with other disabilities, experience greater difficulty with home-based and professional oral care, and that these difficulties may relate in part to sensory processing problems. The results partially supported these hypotheses. Compared to children with other disabilities, those with ASD had greater behavioral difficulties and sensory sensitivities that parents believed interfered with their child's oral care. Among children with ASD, sensory sensitivities were associated with oral care difficulties in the home and dental office, and with behavioral difficulties in the dental office. Utilizing strategies to modify the sensory environment may help facilitate oral care in children with ASD.
Sensory adapted dental rooms significantly reduce autistic children’s physiological and behavioral stress during teeth cleanings ⟩
June 2, 2023
Results of USC–CHLA study of 162 autistic children show that safe and feasible adaptations to the clinic environment created more relaxed, less anxious dental care experiences.
Easing sensory sensitivities in the clinic: Q&A with Leah Stein Duker ⟩
Calli McMurray, in
Spectrum | June 30, 2023
Spectrum spoke with Leah Stein Duker — lead author of a new study published in JAMA Network Open earlier this month — about how simple modifications to the sensory environment can make health care experiences less fraught for autistic children with sensory sensitivities.