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.

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.

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.

Guided Imagery Council: Feasibility, Acceptability, and Preliminary Effects of a Novel Group-Based Lifestyle Intervention in Predominantly Latino Adolescents.

BACKGROUND: The combination of higher stress and higher obesity rates suggests that Latino youth in the United States may be a population at particular risk for obesity-related adverse health outcomes. The objective of this article is to describe the feasibility, acceptability, and quantitative stress-related outcomes of a 6-week pilot lifestyle intervention using guided imagery (GI) council in order to reduce risk factors for obesity-related disease. METHODS: Seventeen urban, adolescents (12 females/5 males, 16 Latino, age 17 ± 1 years, grades 9-12, body mass index 22 ± 4) participated in the 6-week, after-school pilot intervention. The intervention consisted of three, 75-minute after-school sessions delivered weekly for 6 weeks. The 3 weekly sessions included 1 session each of nutrition education, physical activity education and practice, and GI delivered in council, a facilitated group process based on indigenous practices. Feasibility and acceptability were assessed by attendance and qualitative exit interview. Stress outcomes included salivary cortisol and perceived stress. RESULTS: The pilot intervention was found to be feasible to deliver in an after-school setting. The GI and council group format were well liked. A 31% reduction in salivary cortisol was observed following the stress-reduction GI sessions. Diurnal cortisol patterns did not change across the intervention, but change in perceived stress was correlated with change in cortisol awakening response. CONCLUSIONS: The intervention was feasible to deliver and highly acceptable. Acute reduction in salivary cortisol was seen following group GI, while no change was seen in daily cortisol patterns. These results support the development of a full 12-week intervention using GI council to reduce obesity-related disease risk.

Diabetes Empowerment Council: Integrative Pilot Intervention for Transitioning Young Adults With Type 1 Diabetes.

BACKGROUND: The transition of young adults with type 1 diabetes (T1D) from pediatric to adult care is challenging and frequently accompanied by worsening of diabetes-related health. To date, there are no reports which prospectively assess the effects of theory-based psycho-behavioral interventions during the transition period neither on glycemic control nor on psychosocial factors that contribute to poor glycemic control. Therefore, the overall aim of this study was to develop and pilot test an integrative group intervention based on the underlying principles of self-determination theory (SDT), in young adults with T1D. METHODS: Fifty-one young adults with T1D participated in an education and case management-based transition program, of which 9 took part in the Diabetes Empowerment Council (DEC), a 12-week holistic, multimodality facilitated group intervention consisting of "council" process based on indigenous community practices, stress-reduction guided imagery, narrative medicine modalities, simple ritual, and other integrative modalities. Feasibility, acceptability, potential mechanism of effects, and bio-behavioral outcomes were determined using mixed qualitative and quantitative methods. RESULTS: The intervention was highly acceptable to participants, though presented significant feasibility challenges. Participants in DEC showed significant reductions in perceived stress and depression, and increases in general well-being relative to other control participants. Reduction in perceived stress, independent of intervention group, was associated with reductions in hemoglobin A1C. A theoretical model explaining the effects of the intervention included the promotion of relatedness and autonomy support, 2 important aspects of SDT. CONCLUSIONS: The DEC is a promising group intervention for young adults with T1D going through transition to adult care. Future investigations will be necessary to resolve feasibility issues, optimize the multimodality intervention, determine full intervention effects, and fully test the role of the underlying theoretical model of action.ClinicalTrials.gov Registration Number NCT02807155; Registration date: June 15, 2016 (retrospectively registered).

"We are all gonna get diabetic these days": the impact of a living legacy of type 2 diabetes on Hispanic young adults' diabetes care.

PURPOSE: The purpose of this study was to investigate how an intergenerational legacy of type 2 diabetes affected the knowledge, attitudes, and treatment strategies of Hispanic young adults with diabetes. METHODS: Eight Hispanic young adults (ages 18-30 years) participated in a series of in-home longitudinal qualitative interviews, and 11 of their family members completed single in-home interviews, regarding their diabetes management practices. Interview transcripts were analyzed thematically by a team of researchers. RESULTS: Five themes emerged that characterized the influence of an intergenerational legacy of diabetes on young adults: food and family (how meal preparation and eating are shared within families), doing together (activity participation is contingent on others' participation), knowledge and expectations (expectations for the future and understandings of diabetes are shaped by family members), miscarried helping (well-intentioned actions have negative consequences), and reciprocal support (children and parents support each other's diabetes care). CONCLUSIONS: Hispanic young adults' knowledge, attitudes, and self-care practices related to diabetes are strongly influenced by the diabetes management practices of family members with diabetes, which often depart from current standards of diabetes care. Care providers should consider family members as a potentially significant influence, either positive or negative, on the diabetes self-care practices of this population.

Adherence decision making in the everyday lives of emerging adults with type 1 diabetes.

PURPOSE: The purpose of this study was to explore motivations underlying nonadherent treatment decisions made by young adults with type 1 diabetes. METHODS: Eight emerging adults each completed a series of semi-structured interviews concerning their approaches to diabetes care, relationships with clinicians, and everyday activities and routines. A narrative thematic analysis was used to develop initial themes and refine them through continued data collection and review of the research literature. RESULTS: FIVE THEMES WERE IDENTIFIED AS MOTIVATING NONADHERENCE: (1) efforts to mislead health care providers, (2) adherence to alternative standards, (3) treatment fatigue and burnout, (4) social support problems, and (5) emotional and self-efficacy problems. CONCLUSION: Instances of nonadherence generally involved a combination of the five identified themes. Participants reporting nonadherence also described difficulties communicating with care providers regarding their treatment. Nonjudgmental communication between providers and emerging adults may be particularly important in promoting positive health outcomes in this population.