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.

Implementing trials of complex interventions in community settings: the USC-Rancho Los Amigos pressure ulcer prevention study (PUPS).

BACKGROUND: Randomized trials of complex, non-pharmacologic interventions implemented in home and community settings, such as the University of Southern California (USC)-Rancho Los Amigos National Rehabilitation Center (RLANRC) Pressure Ulcer Prevention Study (PUPS), present unique challenges with respect to (1) participant recruitment and retention, (2) intervention delivery and fidelity, (3) randomization and assessment, and (4) potential inadvertent treatment effects. PURPOSE: We describe the methods employed to address the challenges confronted in implementing PUPS. In this randomized controlled trial, we are assessing the efficacy of a complex, preventive intervention in reducing the incidence of, and costs associated with, the development of medically serious pressure ulcers in people with spinal cord injury. METHODS: Individuals with spinal cord injury recruited from RLANRC were assigned to either a 12-month preventive intervention group or a standard care control group. The primary outcome is the incidence of serious pressure ulcers with secondary endpoints including ulcer-related surgeries, medical treatment costs, and quality of life. These outcomes are assessed at 12 and 24 months after randomization. Additionally, we are studying the mediating mechanisms that account for intervention outcomes. RESULTS: PUPS has been successfully implemented, including recruitment of the target sample size of 170 participants, assurance of the integrity of intervention protocol delivery with an average 90% treatment adherence rate, and enactment of the assessment plan. However, implementation has been replete with challenges. To meet recruitment goals, we instituted a five-pronged approach customized for an underserved, ethnically diverse population. In intervention delivery, we increased staff time to overcome economic and cultural barriers to retention and adherence. To ensure treatment fidelity and replicability, we monitored intervention protocol delivery in accordance with a rigorous plan. Finally, we have overcome unanticipated assessment and design concerns related to (1) determining pressure ulcer incidence/severity, (2) randomization imbalance, and (3) inadvertent potential control group contamination. LIMITATIONS: We have addressed the most daunting challenges encountered in the recruitment, assessment, and intervention phases of PUPS. Some challenges and solutions may not apply to trials conducted in other settings. CONCLUSIONS: Overcoming challenges has required a multifaceted approach incorporating individualization, flexibility, and persistence, as well as the ability to implement needed mid-course corrections.

Engaging an African American Church-based Community in Developing a Technology-focused Virtual Reality Hypertension Program.

BACKGROUND: African Americans are disproportionately affected by cardiovascular disease and hypertension. To address this, we partnered with local church leaders in developing a virtual reality (VR) hypertension reduction program. OBJECTIVES: A community-based participatory research approach was adopted to develop a hypertension education program using VR, incorporating feedback from the African American church congregation members. METHODS: Using a qualitative approach, a modified Delphi exercise, and member checking, the research team collaborated with congregation members who provided feedback and assisted in the development of the intervention. LESSONS LEARNED: Incorporating feedback from church members significantly impacted the educational platform. Encouraged by the reverend, church members were engaged and participated in the 12-week program designed to reduce blood pressure. Novel approaches like VR may need more time to pilot to achieve desired results, particularly with vulnerable populations. CONCLUSIONS: This participatory research platform highlights the importance of incorporating external stakeholders throughout the research process in order to develop a meaningful health intervention using new technology that is tailored to the church members.

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.

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.

Multispecialty Nursing During COVID-19:: Lessons Learned in Southern California.

A multispecialty nursing team plays a crucial role in key decision making, education, prevention, screening, assessment, diagnosis, management, data collection and dissemination of best practices during the novel coronavirus disease (COVID-19) pandemic. Using examples from a large, tertiary medical center in Los Angeles, this paper highlights contributions made by multispecialty nursing specialties to optimize health and safety for patients and frontline health care workers. Recognizing nurses' ongoing critical role encourages and informs further collaboration and serves as a catalyst to innovation for a healthier tomorrow. The result of the COVID-19 pandemic will be felt for years to come.

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.

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.

A qualitative analysis of pressure injury development among medically underserved adults with spinal cord injury.

Purpose: Medically underserved adults with spinal cord injury (SCI) remain at high risk of incurring medically serious pressure injuries even after receiving education in prevention techniques. The purpose of this research is to identify circumstances leading to medically serious pressure injury development in medically underserved adults with SCI during a lifestyle-based pressure injury prevention program, and provide recommendations for future rehabilitation approaches and intervention design.Methods: This study entailed a qualitative secondary case analysis of treatment notes from a randomized controlled trial. Participants were 25 community-dwelling, medically underserved adults with SCI who developed medically serious pressure injuries during the course of the intervention of the RCT.Results and conclusions: Among the 25 participants, 40 unique medically serious pressure injuries were detected. The six themes related to medically serious pressure injury development were: (1) lack of rudimentary knowledge pertaining to wound care; (2) equipment and supply issues; (3) comorbidities; (4) non-adherence to prescribed bed rest; (5) inactivity; and (6) circumstances beyond the intervention's reach. Together, these factors may have undermined the effectiveness of the intervention program. Modifications, such as assessing health literacy levels of patients prior to providing care, providing tailored wound care education, and focusing on equipment needs, have potential for altering future rehabilitation programs and improving health outcomes.Implications for rehabilitationTo provide patients with spinal cord injury with the necessary information to prevent medically serious pressure injury development, health care providers need to understand their patient's unique personal contexts, including socio-economic status, language skills, and mental/cognitive functioning.When providing wound care information to patients with spinal cord injury who have developed a medically serious pressure injury, practitioners should take into account the level of health literacy of their patient in order to provide education that is appropriate and understandable.Practitioners should be aware of how to help their patient advocate for outside services and care that address their equipment needs, such as finding funding or grants to pay for expensive medical equipment.

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.

Factors Protecting Against Pressure Injuries in Medically Underserved Adults With Spinal Cord Injury: A Qualitative Study.

Background: Pressure injuries negatively impact quality of life and participation for individuals with spinal cord injury (SCI). Objective: To examine the factors that may protect against the development of medically serious pressure injuries in adults with SCI. Methods: A qualitative analysis was conducted using treatment notes regarding 50 socioeconomically disadvantaged individuals who did not develop medically serious pressure injuries during a 12-month pressure injury prevention intervention program. Results: Eight types of potentially protective factors were identified: meaningful activity, motivation to prevent negative health outcomes, stability/resources, equipment, communication and self-advocacy skills, personal traits, physical factors, and behaviors/activities. Conclusions: Some protective factors (eg, personal traits) may be inherent to certain individuals and nonmodifiable. However, future interventions for this population may benefit from a focus on acquisition of medical equipment and facilitation of sustainable, health-promoting habits and routines. Substantive policy changes may be necessary to facilitate access to adequate resources, particularly housing and equipment, for socioeconomically disadvantaged individuals with SCI. Further research is needed to understand the complex interplay of risk and protective factors for pressure injuries in adults with SCI, particularly in underserved groups.

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.

Lifestyle intervention for adults with spinal cord injury: Results of the USC-RLANRC Pressure Ulcer Prevention Study.

CONTEXT/OBJECTIVE: Medically serious pressure injuries (MSPrIs), a common complication of spinal cord injury (SCI), have devastating consequences on health and well-being and are extremely expensive to treat. We aimed to test the efficacy of a lifestyle-based intervention designed to reduce incidence of MSPrIs in adults with SCI. DESIGN: A randomized controlled trial (RCT), and a separate study wing involving a nonrandomized standard care control group. SETTING: Rancho Los Amigos National Rehabilitation Center, a large facility serving ethnically diverse, low income residents of Los Angeles County. PARTICIPANTS: Adults with SCI, with history of one or more MSPrIs over the past 5 years: N=166 for RCT component, N=66 in nonrandomized control group. INTERVENTIONS: The Pressure Ulcer Prevention Program, a 12-month lifestyle-based treatment administered by healthcare professionals, largely via in-home visits and phone contacts. OUTCOME MEASURES: Blinded assessments of annualized MSPrI incidence rates at 12 and 24 months, based on: skin checks, quarterly phone interviews with participants, and review of medical charts and billing records. Secondary outcomes included number of surgeries and various quality-of-life measures. RESULTS: Annualized MSPrI rates did not differ significantly between study groups. At 12 months, rates were .56 for intervention recipients, .48 for randomized controls, and .65 for nonrandomized controls. At follow-up, rates were .44 and .39 respectively for randomized intervention and control participants. CONCLUSIONS: Evidence for intervention efficacy was inconclusive. The intractable nature of MSPrI threat in high-risk SCI populations, and lack of statistical power, may have contributed to this inability to detect an effect. TRIAL REGISTRATION: ClinicalTrials.gov NCT01999816.