Evaluating non-pharmacological approaches to nursing home dementia care: A protocol.

Background: The COVID-19 pandemic has underscored the daily challenges nursing home (NH) staff face caring for the residents living with Alzheimer's Disease and Related Dementias (ADRD). Non-pharmacological approaches are prioritized over off-label medication to manage the behavioral and psychological symptoms of ADRD. Yet, it is not clear how to best equip NH staff and families with the knowledge and strategies needed to provide non-pharmacological approaches to these residents. Methods: This clustered randomized trial will compare team- and problem-based approaches to non-pharmacological ADRD care. The team-based approach includes core training for all NH staff using a common language and strategies to support continuity and sustainability. The problem-based approach capitalizes on the expertise of the professional healthcare providers to target issues that arise. A convergent mixed methods design will be used to examine (a) comparative effectiveness of the two approaches on long-term NH resident outcomes and (b) whether either approach is protective against the negative consequences of COVID-19. The primary outcome is the percentage of ADRD residents with off-label antipsychotic medication use, which will be evaluated with an intent-to-treat approach. Staff and family caregiver perspectives will be explored using a multiple case study approach. Conclusion: This trial will be the first-ever evaluation of team- and problem-based approaches to ADRD care across multiple NHs and geographic regions. Results can provide health system leaders and policymakers with evidence on how to optimize ADRD training for staff in an effort to enhance ADRD care delivery.

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.

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.

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.

Toothbrushing and Oral Care Activities of Autistic and Non-Autistic Latino Children.

BACKGROUND: Oral care activities, e.g., toothbrushing, are habitual occupations often considered routine. However, for autistic children, performing these routine dental practices can be challenging due to the child's sensory sensitivities, unique executive function, and the complicated way in which autistic children conceptualize structure and habits. Limited research exists exploring the nuances of oral care routines in the autistic population, and more knowledge is needed to support targeted education interventions to improve oral care and address health inequities. The purpose of this study was to examine videos of oral care routines in the home to understand how oral care activities, such as toothbrushing, were performed by autistic and non-autistic Latino/a children. METHODS: Parents/caregivers from eighteen Latino/a families with children between 6 and 12 years old (n = 10 autistic children and n = 8 non-autistic children) video recorded their child's oral care routines for three days. The research team blindly coded and analyzed these videos using an oral care observation template to understand how these activities were uniquely performed by the children. RESULTS: Eighty-five oral care videos were analyzed for this study. In addition to noting areas of oral care that can be improved, which included length of brushing and using the correct brushing technique, we identified two themes related to the differences between oral care practices in the autistic and non-autistic children: parent involvement and modifications. CONCLUSIONS: Qualitative findings show that parental involvement was documented especially in the case of autistic children, and that two types of modifications, habitual and sensory, were observed that demonstrated parents being aware of the needs of their autistic child and modifying the oral care activity to meet those needs. By synthesizing observations from the oral care videos into suggestions for practitioners working with families, we hope to supplement knowledge about effective oral care practices for autistic and non-autistic Latino/a children, thereby improving overall oral health and reducing oral health inequities in this population.

Identifying Gaps in Oral Care Knowledge, Attitudes, and Practices of Latinx Parents/Caregivers of Children With and Without Autism Spectrum Disorders.

Purpose: This pilot study used data from a survey to examine the knowledge, attitudes, and practices about oral care of Latinx parents/caregivers of children with or without autism spectrum disorder (ASD) to identify gaps to focus future intervention. Methods: Sixty English-speaking Latinx parents/caregivers who had a child between 4 and 14 years with or without ASD (n=31 ASD, n=29 typically developing [TD]) completed a questionnaire on oral health knowledge, practices, access to care, and demographics. Caregiver responses were compared, and gaps in knowledge and practices were identified. Results: There were no significant differences in parent age, child age, income, insured status, or overall knowledge scores, only a significant difference in education (p=0.02), with the ASD group reporting less. Scores for knowledge, attitudes, access and practice were all nonsignificantly positively correlated, as was attitudes with access and practice. However, knowledge and attitudes were significantly negatively correlated. Additional significant findings were parents who had lower income and education, had lower oral knowledge scores, decreased frequency of dental visits, increased feelings of being discriminated against, children with increased fear of the dentist, and decreased ease of finding a dentist. Conclusion: Factors such as income, education, ethnicity, and having a child with ASD can influence what Latinx parents and caregivers know about oral health and how their children experience receiving dental care. Latinx parents/caregivers of children with and without ASD report barriers to dental care, including difficulty attending visits or feeling stigmatized by their dental provider due to their ethnicity. Fear of the dentist is significantly correlated with ASD diagnosis and lower social demographics of the parent, and may contribute to a reduction in preventative oral care visits as well. Health care providers should consider these perspectives when providing care to this population to mitigate further oral health inequities.

Exploring Eating Challenges and Food Selectivity for Latinx Children with and without Autism Spectrum Disorder Using Qualitative Visual Methodology: Implications for Oral Health.

Diet and food choices significantly impact teeth, including enamel quality and development of dental caries. However, studies focusing on diet and its relation to oral care in Latinx children with and without Autism Spectrum Disorders (ASD) have been minimally addressed in research. This qualitative study used an inclusive visual methodology to explore what Latinx caregivers learned about their child's diet preferences and food routines in relation to their oral health. As a secondary aim, the study sought to explore whether notable differences in diet emerged between Latinx children with and without ASD. Participants were 32 Latinx caregivers from 18 families with children with and without Autism (n = 8 with a typically developing child and n = 10 with a child with ASD) who completed a food journal activity and photo elicitation interview. Interviews were thematically coded for themes pertaining to parents' perceptions of their child's diet and oral health. Findings of this study indicate that the process of taking photos helped Latinx caregivers to better situate the barriers and behaviors influencing everyday food routines in their children within the context of relating to their overall oral health. Via their active participation in the research process, parents were empowered to note strategies they could employ that would directly impact their child's oral health outcomes, such as reducing juice intake and monitoring sugar consumption. Therefore, visual research methodologies are an important strategy for researchers to consider in order to empower participants to be part of the research process and part of the outcomes, and to offer better understanding of the lived experience of populations underrepresented in the literature, such as Latinx children with and without ASD and their families.

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.

Differing interpretations of health care encounters: A qualitative study of non-Latinx health care providers' perceptions of Latinx patient behaviors.

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.

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.

Oral Care Experiences of Latino Parents/Caregivers with Children with Autism and with Typically Developing Children.

As a result of various barriers, several pediatric populations are at risk for poor oral health, including children with disabilities and children from under-represented populations, such as Latinos. To this end, this study aimed to better understand the factors that affect the oral health experiences of 32 Latino parents/caregivers from 18 families (n = 8 with a typically developing child and n = 10 with a child with Autism). Using a qualitative descriptive methodology, each family was interviewed twice. Interviews were audio-recorded, transcribed verbatim, and coded thematically to identify the individual, social, systemic, and culturally rooted factors contributing to oral health disparities in the families. The three themes that arose were "Why would I want to start trouble?": Latino parents' dissatisfaction with dental treatments, costs, and fear of the dentist and health care providers because of their ethnic minority status as key factors inhibiting receipt of dental care; "We have to put our children first": prioritizing the oral care activities of their children over their own individual oral care needs; and "We always keep baking soda around": familial and cultural influences on oral care habits. Understanding the oral health beliefs and experiences of Latino parents and caregivers of children with and without autism is critical for developing targeted prevention and intervention programs and reducing oral health disparities.

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.