Feasibility of wearable sensors in the NICU: Psychophysiological measures of parental stress.

BACKGROUND: Parents report elevated stress during their infant's NICU hospitalization. Real-time measures may improve our understanding of parental stress in the NICU. AIM: Examine the feasibility of wearable sensors to describe parental stress in the NICU. STUDY DESIGN: In this prospective feasibility study of 12 parent-infant dyads, parents wore an Empatica E4 wristband to measure psychophysiological stress via electrodermal activity (EDA) during sensory interventions (holding, massage, reading, touch, etc) with their babies. Baseline and intervention periods were delineated during which concurrent monitoring and clinical observations of infant behavior and environmental factors were recorded. Feasibility was assessed by investigating recruitment/enrollment, retention/adherence, acceptability, sensor usability, and changes in EDA waveforms based on potential stressors. For the latter, independent samples t-tests and ANOVA were used to examine differences in EDA from baseline to intervention, and the impact of environmental and infant factors on parent stress were visually analyzed against EDA waveforms. RESULTS: Wearable sensor use in the NICU appeared feasible as assessed by all methods. Preliminary data analysis indicated that overall parent EDA levels during parent-infant interactions were low, and engagement in sensory intervention(s) led to a non-significant increase in parental EDA, measured by both skin conductance levels and non-specific skin conductance responses. Three main patterns of EDA emerged: a temporary increase in EDA at the beginning of the intervention followed by a decrease and plateau, a plateau in EDA from baseline to intervention, and a gradual rise in EDA throughout intervention. Specific environmental and infant factors, such as infant stress and health care providers entering the room, appeared to impact parent stress levels. CONCLUSION: Although these preliminary findings provide support for use of EDA in the NICU, future studies are needed.

Sensory Adaptations to Improve Physiological and Behavioral Distress During Dental Visits in Autistic Children: A Randomized Crossover Trial.

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: ß = -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.

Pediatricians' role in healthcare for Latino autistic children: Shared decision-making versus "You've got to do everything on your own".

LAY ABSTRACT: Latino parents may choose to use complementary health approaches, such as vitamins, supplements, and special diets, for their autistic children. However, they might not tell their pediatrician about their complementary health approach use if they worry that the pediatrician will disapprove or judge them. This fear, along with pediatricians' lack of autism knowledge, creates barriers to "shared decision-making" between parents and pediatricians. Shared decision-making is a process where families and healthcare providers collaborate and exchange information in order to come to an agreement about treatment options. In our qualitative study with 12 bilingual Latino families of autistic children, we interviewed and observed families to learn about their experiences with both conventional healthcare (their pediatrician) and complementary health approaches. Our study results describe the parents' different pathways to an autism assessment, a process that is sometimes called the "diagnostic odyssey." The parents reported that conventional healthcare met their needs for their child's physical health but not for their child's developmental challenges. The parents who used complementary health approaches for their autistic children were more frustrated about a lack of autism information from pediatricians than those who did not use complementary health approaches. Finally, we describe two examples of successful shared decision-making between parents and pediatricians. We conclude that pediatricians who are able to talk about complementary health approaches with Latino families may help to facilitate shared decision-making and reduce healthcare disparities for Latino autistic children.

Telehealth Utilization Among Occupational Therapists in Oncology: Results From a National Survey.

While the COVID-19 pandemic introduced wide expansion of telehealth access in health care, evidence concerning telehealth use in occupational therapy (OT) for cancer survivors remains limited. The objective of this study was to identify the prevalence and perceptions of telehealth services among occupational therapy practitioners (OTPs) in oncology. Descriptive statistics and qualitative content analysis were used to analyze data from a pre-pandemic national survey of OTPs (n = 126) focusing on telehealth. Most OTPs in oncology settings support telehealth use, despite a dearth of access prior to the pandemic. The highest levels of telehealth endorsement among OTPs related to ease of accessibility (48%). Treatments rated as best suited for OT oncology telehealth sessions included education (41%), quality of life/well-being/lifestyle (21%), and psychosocial interventions (19%). These data suggest widespread benefits of telehealth-delivered OT treatment in oncology. Advocacy is needed to ensure the continuation of legislation allowing expanded telehealth access and reimbursement for OT.

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.

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.

Oral Health Barriers for African American Caregivers of Autistic Children.

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.

Caregiver perspectives on barriers and facilitators to primary care for autistic adults: A qualitative study.

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.

Oral Care Knowledge, Attitudes, and Practices of Black/African American Caregivers of Autistic Children and Non-Autistic Children.

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.

The Relationship between Dental Fear and Anxiety, General Anxiety/Fear, Sensory Over-Responsivity, and Oral Health Behaviors and Outcomes: A Conceptual Model.

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.

Association between oral care challenges and sensory over-responsivity in children with Down syndrome.

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: To investigate the relationship between sensory over-responsivity and oral care challenges in cDS. DESIGN: An online survey examined parent-reported responses describing the oral care of their cDS (5-14 years; n = 367). Children were categorized as either 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 than of 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 healthcare needs (SOR:45%, SNOR:33%; p = .03), and their child requires full assistance to brush teeth (SOR:41%, SNOR:28%; p = .008). No intergroup differences were found in items examining parent-reported child oral health or care access. CONCLUSIONS: Parents of SOR children reported greater challenges than parents of SNOR children at the dentist's office and in the home, including challenging behaviors and sensory sensitivities.

Brief Report: Caregiver Confidence in Reporting Anxiety Symptoms in Children with Autism Spectrum Disorder.

Assessment of anxiety in children with autism spectrum disorder (ASD) most commonly includes parent questionnaires. However, due to the nature of the questions and verbal limitations often present in children with ASD, caregivers may have difficulty completing such measures. Caregivers of 144 children with ASD ages 6 to 12 completed the Child and Adolescent Symptom Inventory-4 ASD Anxiety Scale and rated their level of confidence in responding to each item. Results indicated that parents had a moderate to high level of confidence in rating their children's anxiety symptoms. Parent confidence was not influenced by their child's age, expressive language ability, or intellectual functioning, but was related to their child's anxiety symptom count and ASD severity.

Oral Health and Autism Spectrum Disorders: A Unique Collaboration between Dentistry and Occupational Therapy.

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.

Oral Care Experiences and Challenges for Children with Down Syndrome: Reports From Caregivers.

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.

Use of Audiobooks as an Environmental Distractor to Decrease State Anxiety in Children Waiting in the Pediatric Emergency Department: A Pilot and Feasibility Study.

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 d z = 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.

Examining unconscious bias embedded in provider language regarding children with autism.

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.

Examining Primary Care Health Encounters for Adults With Autism Spectrum Disorder.

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.

The Persistence of Oral Health Disparities for African American Children: A Scoping Review.

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.

Strategies for Success: A Qualitative Study of Caregiver and Dentist Approaches to Improving Oral Care for Children with Autism.

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.

Occupational therapy practice in oncology care: Results from a survey.

The everyday landscape of occupational therapy (OT) in oncology is underexplored, hindering targeted improvements. The purpose of the present study was to identify the OT interventions commonly provided and reimbursed in oncology. A survey utilizing snowball sampling was disseminated online to OT working in oncology care; 167 surveys were received from 21 states in the United States. Results found that over 90% of therapists reported focusing on physical impairment, weakness, fatigue, and activities of daily living. Interventions for emotional/social support, self-advocacy, quality of life, lifestyle management, and cognitive impairment were not directly billed. More than 90% of therapists reported that, in the absence of barriers, they would address quality of life, emotional difficulties, lifestyle management, and home safety. Overall, the findings suggested that OT in the United States primarily provide physical interventions for oncology patients. However, they also provide psychosocial services and client/caregiver education, but often do not bill directly for this care. Reimbursement structures should be modified to allow for the direct billing of mental/psychosocial and educational interventions in OT for cancer care.

EDA-gram: designing electrodermal activity fingerprints for visualization and feature extraction.

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.