Perspectives on the essential skills of healthcare decision making in children and adolescents with intellectual disability.

BACKGROUND: Involvement in healthcare decisions is associated with better health outcomes for patients. For children and adolescents with intellectual disability, parents and healthcare professionals need to balance listening to a child's wishes with the responsibility of keeping them safe. However, there is a scarcity of literature evaluating how to effectively involve them in decision making. In this context, we review the concept of health literacy, focusing on the skills of healthcare decision making for children and adolescents with intellectual disability. METHODS: We describe the concept of health literacy and models explaining shared decision making (individuals and healthcare professionals collaborate in decision making process) and supported decision making (when a trusted person supports the individual to collaborate with the healthcare professional in the decision-making process), and a rapid review of the literature evaluating their efficacy. We discuss healthcare decision making for children and adolescents with intellectual disability in the context of relevant recommendations from the recent Disability Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability in Australia. RESULTS: Health literacy skills enable individuals to access, understand, appraise, remember and use health information and services. Shared decision making has been described for children with chronic conditions and supported decision making for adults with intellectual disability. Decision-making contributes to how individuals appraise and use healthcare. The rapid review found very limited evidence of outcomes where children and adolescents with intellectual disability have been supported to contribute to their healthcare decisions. Recommendations from the Disability Royal Commission highlight current needs for greater efforts to support and build the capacity of individuals with disability to be involved in the decisions that affect their life, including healthcare decision making. CONCLUSIONS: Existing rights frameworks and healthcare standards confirm the importance of providing all people with the opportunities to learn and practise health literacy skills including decision making. There is little literature examining interventions for healthcare decision making for children with intellectual disability. Childhood is a critical time for the development of skills and autonomy. Evidence for how children and adolescents with intellectual disability can learn and practice healthcare decision-making skills in preparation for adulthood is needed to reduce inequities in their autonomy.

Adaptation of a health literacy screener for computerized, self-administered use by U.S. adults.

Objective: Health literacy is a critical health determinant, for which few computerized, self-administered assessments exist. This study adapted and tested the reliability of the Newest Vital Sign© (NVS) as a computerized, self-administered health literacy screener. Methods: Phase one involved 33 participants to create response options for a computerized, self-administered NVS (C-NVS). Phase two was a randomized crossover trial to test the consistency of C-NVS and original, interviewer-administered NVS (I-NVS) scores in 89 participants. Results: Linear mixed-effects regression model results showed a significant carryover effect (p < .001). Crossover trial data from time 1 showed that participants who initially received the C-NVS had significantly higher average scores (M = 5.7, SD = 0.6) than participants who received the I-NVS (M = 4.5, SD = 1.5; t(87) = 5.25, p < .001). Exploratory analysis results showed that when the washout period was longer than 33 days (75th percentile) the carryover effect was not statistically significant (p = .077). Conclusion and innovation: Findings suggest learning can occur when health literacy screeners are administered more than once in less than a month's time and computerized, self-administered health literacy screeners may produce ceiling effects. A universal precautions approach to health literacy therefore remains germane.

"Know Your Children, Who They Are, Their Weakness, and Their Strongest Point": A Qualitative Study on Diné Parent Experiences Accessing Autism Services for Their Children.

BACKGROUND AND OBJECTIVE: Marked inequities in access to autism services and related health outcomes persist for U.S. children, undermining broader initiatives to advance the population's health. At the intersection of culture, poverty, and ruralness little remains known about autism in many Indigenous communities. This qualitative study on the lived experiences of Navajo (Diné) parents raising a child with autism sought to identify factors affecting access to services. METHODS: A Diné researcher conducted in-depth interviews with 15 Diné parents of children with autism living in or around the Navajo Nation. A directed content analysis approach was used to identify themes, subthemes, and connections between themes. RESULTS: Twelve overarching themes emerged on Diné parents' experiences accessing autism diagnostic and treatment services, as well as ways access to autism services can be improved. The following themes were related to diagnosis: the diagnostic process was often emotionally fraught; long wait times of up to years for diagnostic services were commonplace; limited clinician training and cultural humility impeded access to diagnostic services; and adequate health insurance, Indian Health Service referrals, care coordination, financial aid for travel, and efficient evaluation facilitated diagnosis. Themes on treatment access were as follows: parent perceptions of the extent to which an autism service helped their child affected access; social support helped parents to access treatment; obtaining referrals and care coordination influenced treatment access; treatment costs affected access; and service availability and geographic proximity impacted treatment access. Themes on ways to improve access to autism services were as follows: greater autism awareness is needed; autism-focused support groups may be helpful; and increased availability and quality of autism services across and around the Navajo Nation is paramount. CONCLUSIONS: Diné parents' access to autism services was dynamically affected by sociocultural factors that must be addressed in future health equity-oriented initiatives.

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.

Brief Report: Gender-Based Stereotypical Roles of Parents Caring for Autistic Children in Nigeria and South Africa.

In Nigeria and South Africa, women often have less voice and are less visible given cultural norms and related gender stereotypes. It is important to understand parents' gender roles in the context of caregiving for children with autism spectrum disorder because inequality in caregiving roles may influence the health of children with autism and that of their parents. We explored the lived caregiving experiences of male and female parents with autistic children in Nigeria (n = 15) and South Africa (n = 10) using structured and unstructured questionnaire. Results showed that women often experienced stress in relationship to multiple and substantial caregiving roles while men commonly limited their caregiving roles based on a patriarchal ideology related to their culture.

Therapy use for U.S. school-aged children with developmental disabilities: State variation and determinants.

BACKGROUND: Therapy services can support developmental needs, improve social emotional outcomes, and reduce persistent health inequities for children with developmental disabilities (DD). Receipt of therapy services may be especially timely when children with DD are school-aged, once diagnosis has often occurred. Yet limited knowledge exists on geographic variability and determinants of therapy use among school-aged U.S. children with DD. OBJECTIVES: We aimed to (1) determine if therapy use varies significantly by state and (2) examine associations of health determinants with therapy use among U.S. school-aged children with DD. METHODS: This was a secondary analysis of 2016 and 2017 National Survey of Children's Health data. The sample included 9984 children with DD ages 6-17 years. We obtained odds ratios and predicted margins with 95% confidence intervals from multilevel logistic regression models to examine therapy use variation and determinants. RESULTS: Overall, 34.6% of children used therapy services. Therapy use varied significantly across states (σ2 = 0.11, SE = 0.04). Younger age, public insurance, functional limitations, individualized education program, frustration accessing services, and care coordination need were associated with higher adjusted odds of therapy access. In states with Medicaid Home and Community-Based Services waivers, higher estimated annual waiver cost was associated with lower adjusted odds of therapy use. CONCLUSIONS: Results highlight geographic disparities in therapy use and multilevel targets to increase therapy use for school-aged children with DD.

A systematic search and review of the discrimination in health care measure, and its adaptations.

BACKGROUND: Discrimination occurs in health care settings contributing to health inequities. Yet guidance on how best to measure discrimination in health care is still limited. OBJECTIVES: We sought to (1) identify and describe the characteristics of published studies that used the Discrimination in Health Care Measure, a scale first published in 2001; (2) review how the measure has been used or adapted and summarize the measure's published psychometric properties and its variations; and (3) summarize associations between the measure and health-related variables. METHODS: We performed a systematic search and review of the measure by searching PsycINFO, PubMed, Sociological Abstracts, and Web of Science from January 1, 2001 through January 31, 2017. We screened 260 unique articles, identified 22 eligible articles, and completed a narrative synthesis. RESULTS: Most studies measured race or ethnicity-based discrimination. All studies made minor revisions to the measure, and most reported high reliabilities. Discrimination in health care, using this measure, was associated with adverse health outcomes. DISCUSSION AND PRACTICE IMPLICATIONS: Study results indicate that the measure is easy to use and adapt. Researchers should consider using the Discrimination in Health Care Measure when designing studies that will examine individuals' discriminatory experiences when receiving health care.

Caregiver strain among North American parents of children from the Autism Treatment Network Registry Call-Back Study.

LAY ABSTRACT: Caregiver strain is the adverse impact that parents of children with emotional and behavioral issues including autism often experience (e.g. negative consequences of caregiving such as financial strain and social isolation; negative feelings that are internal to the caregiver such as worry and guilt; and negative feelings directed toward the child such as anger or resentment). This study showed that on average caregiver strain did not significantly change in North American parents of children with autism during a 2-year period. Improved caregiver strain was linked to improved child functioning and behavior. Routine assessment of caregiver strain and referral to evidence-based programming and supports may help alleviate some of the burden that families of children with autism commonly experience.

"I Don't Do Much Without Researching Things Myself": A Mixed Methods Study Exploring the Role of Parent Health Literacy in Autism Services Use for Young Children.

Little is known about how parent health literacy contributes to health-related outcomes for children with autism. This mixed-methods study included 82 U.S. parents of a child with autism 2-5 years-old and sought to describe (1) health literacy dimensions, (2) how health literacy influences services use, and (3) health literacy improvement strategies. Results showed: autism information was accessed from multiple sources; understanding autism information involved "doing your own research"; autism information empowered decision-making; health literacy facilitated behavioral services use; health literacy influenced medication use; family and system characteristics also affected services use; autism education remains needed; services information is needed across the diagnostic odyssey; and greater scientific information accessibility would increase uptake. Findings demonstrate how parent health literacy affects services use.

Perceived community disability stigma in multicultural, low-income populations: Measure development and validation.

BACKGROUND: Stigma and knowledge about disabilities differ across groups, impacting care. No validated measures of perceived community disability stigma exist for families in multicultural communities, at risk for disparities. AIMS: Develop and validate a brief bilingual (i.e., English/Spanish) perceived disability stigma measure, compare perceived disability and autism stigma, and examine perceived disability stigma by parent sociodemographic characteristics and disability familiarity. METHODS AND PROCEDURES: Secondary data from 522 parents with children ages 2-5 years were recruited from Oregon WIC Special Supplemental Nutrition Program agencies for a child development and disability survey in 2015. The study sample included items regarding disability familiarity and stigma, among the survey population, which was 50 % Latino. Internal consistency, reliability and structural validity were examined. Secondary data on perceived disability and similar autism stigma items were compared. Nested multivariable linear regression assessed associations of perceived disability stigma with sociodemographic characteristics and disability familiarity. OUTCOMES AND RESULTS: Five perceived disability stigma items had reasonable internal consistency and performed well in the confirmatory factor analysis. Perceived autism stigma was greater than perceived disability stigma. Latino parents reported less perceived disability stigma than white parents. Parents who knew 1+ individual(s) with a disability reported greater perceived disability stigma. CONCLUSIONS AND IMPLICATIONS: The perceived disability stigma scale demonstrated sound psychometric properties. Results suggest differences in how stigma is perceived across sociodemographic characteristics and disability familiarity.

Vision care among school-aged children with autism spectrum disorder in North America: Findings from the Autism Treatment Network Registry Call-Back Study.

LAY ABSTRACT: Children with autism are at high risk for vision problems, which may compound core social and behavioral symptoms if untreated. Despite recommendations for school-aged children with autism to receive routine vision testing by an eye care practitioner (ophthalmologist or optometrist), little is known about their vision care. This study, therefore, examined vision care among 351 children with autism ages 6-17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Parents were surveyed using the following vision care measures: (1) child's vision was tested with pictures, shapes, or letters in the past 2 years; (2) child's vision was tested by an eye care practitioner in the past 2 years; (3) child was prescribed corrective eyeglasses; and (4) child wore eyeglasses as recommended. Sociodemographic characteristics such as parent education level, child functioning characteristics such as child communication abilities, and family functioning characteristics such as caregiver strain were also assessed in relationship to vision care. Although 78% of children with autism had their vision tested, only 57% had an eye care practitioner test their vision in the past 2 years. Among the 30% of children with autism prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Differences in vision care were additionally found among children with autism by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism do not receive recommended vision care and highlight potentially modifiable disparities in vision care.

Health Literacy and Health Outcomes Among Children With Developmental Disabilities: A Systematic Review.

Developmental disabilities (DDs) are prevalent and associated with health disparities among children. Family health literacy of parents and/or children is one modifiable factor associated with child health; however, little is known about family health literacy for children with DDs. This systematic review was conducted to determine evidence on associations of health literacy with health outcomes among children with DDs. Medline, CINAHL, Embase, ERIC, PsycInfo, and Web of Science were searched through August 2018. Of 2,768 unique records, 53 full text articles were reviewed and four articles were included. Associations of family health literacy with health outcomes among children with DDs were mixed. Future research should include more diverse samples, greater breadth in health outcomes assessed, and increased methodological rigor.

An Exploration of Health Behaviors in a Mind-Body Resilience Intervention for Parents of Children with Developmental Disabilities.

OBJECTIVE: Parents of children with special needs such as learning and attentional disabilities (LADs) and autism spectrum disorder (ASD) are at high risk for stress-related disorders. The demands of parenting may compete with time for self-care behaviors such as physical activity, healthy eating, and adequate sleep. The objective was to describe health behaviors among this understudied population and assess the changes after a resilience intervention. METHODS: This was a secondary data analysis of a randomized controlled pilot virtual mind-body resilience intervention (Stress Management and Resiliency Training: A Relaxation Response Resiliency Program) trial for parents of children with LADs (n = 52) and ASD (n = 47). Parents completed self-report questionnaires about their weekly physical activity, eating behaviors, sleep duration, and fatigue before and after the 8-week intervention. Descriptive statistics and pre-post intervention effect sizes (Cohen's d) were calculated. RESULTS: Both parent groups reported suboptimal levels of health behaviors at baseline, but ASD parents reported lower health behaviors than LAD parents. LAD parents improved more on physical activity, with a higher percentage meeting recommendations at postintervention follow-up (d = 0.71) than ASD parents (d = 0.01). Eating behaviors showed small effect size improvements for both groups. Although sleep duration improved only with small or medium effect sizes for both groups, ASD parents rated their fatigue lower after the intervention (d = 0.81). CONCLUSION: Parents of children with special needs who participated in a virtual resilience intervention demonstrated suboptimal health behaviors. There is a need for targeted interventions for health behaviors that can promote resilience in these high-stress populations.

Families' Experiences With Family Navigation Services in the Autism Treatment Network.

BACKGROUND AND OBJECTIVES: Families of children with autism spectrum disorder (ASD) often experience challenges navigating multiple systems to access services. Family navigation (FN) is a model to provide information and support to access appropriate services. Few studies have been used to examine FN's effectiveness for families of children with ASD. This study used mixed methods to (1) characterize FN services received by a sample of families in the Autism Treatment Network; (2) examine change in parent-reported activation, family functioning, and caregiver strain; and (3) explore families' experiences with FN services. METHODS: Family characteristics and parent outcomes including parent activation, family functioning, and caregiver strain were collected from 260 parents in the Autism Treatment Network. Descriptive statistics and linear mixed models were used for aims 1 and 2. A subsample of 27 families were interviewed about their experiences with FN services to address aim 3. RESULTS: Quantitative results for aims 1 and 2 revealed variability in FN services and improvement in parent activation and caregiver strain. Qualitative results revealed variability in family experiences on the basis of FN implementation differences (ie, how families were introduced to FN, service type, intensity, and timing) and whether they perceived improved skills and access to resources. CONCLUSIONS: Findings suggest FN adaptations occur across different health care delivery systems and may result in highly variable initial outcomes and family experiences. Timing of FN services and case management receipt may contribute to this variability for families of children with ASD.

Service Use Classes Among School-aged Children From the Autism Treatment Network Registry.

BACKGROUND AND OBJECTIVES: Use of specific services may help to optimize health for children with autism spectrum disorder (ASD); however, little is known about their service use patterns. We aimed to (1) define service use groups and (2) determine associations of sociodemographic, developmental, behavioral, and health characteristics with service use groups among school-aged children with ASD. METHODS: We analyzed cross-sectional data on 1378 children aged 6 to 18 years with an ASD diagnosis from the Autism Speaks Autism Treatment Network registry for 2008-2015, which included 16 US sites and 2 Canadian sites. Thirteen service use indicators spanning behavioral and medical treatments (eg, developmental therapy, psychotropic medications, and special diets) were examined. Latent class analysis was used to identify groups of children with similar service use patterns. RESULTS: By using latent class analysis, school-aged children with ASD were placed into 4 service use classes: limited services (12.0%), multimodal services (36.4%), predominantly educational and/or behavioral services (42.6%), or predominantly special diets and/or natural products (9.0%). Multivariable analysis results revealed that compared with children in the educational and/or behavioral services class, those in the multimodal services class had greater ASD severity and more externalizing behavior problems, those in the limited services class were older and had less ASD severity, and those in the special diets and/or natural products class had higher income and poorer quality of life. CONCLUSIONS: In this study, we identified 4 service use groups among school-aged children with ASD that may be related to certain sociodemographic, developmental, behavioral, and health characteristics. Study findings may be used to better support providers and families in decision-making about ASD services.

A Profile of Care Coordination, Missed School Days, and Unmet Needs Among Oregon Children with Special Health Care Needs with Behavioral and Mental Health Conditions.

To inform Oregon's Title V needs assessment activities, we aimed to (1) characterize the state's subpopulation of children with special health care needs (CSHCN) with behavioral and mental health conditions (B/MHC) and (2) determine associations of care coordination with missed school days and unmet needs for this subpopulation. We analyzed 2009-2010 National Survey of Children with Special Health Care Needs data on 736 Oregon CSHCN < 18 years, including 418 CSHCN with B/MHC. Among Oregon CSHCN with B/MHC: 48.9% missed ≥ 4 school days, 25% had ≥ 1 unmet health services need, and 14.8% had ≥ 1 unmet family support services need. Care coordination was associated with lower adjusted odds of ≥ 1 unmet health services need but was not significantly associated with missed school days or unmet family support services need. The approach to identify Oregon CSHCN with B/MHC may be adopted by other states endeavoring to improve health for this vulnerable subpopulation.

Healthcare access and adverse family impact among U.S. children ages 0-5 years by prematurity status.

BACKGROUND: Many children and their families are affected by premature birth. Yet, little is known about their healthcare access and adverse family impact during early childhood. This study aimed to (1) examine differences in healthcare access and adverse family impact among young children by prematurity status and (2) determine associations of healthcare access with adverse family impact among young children born prematurely. METHODS: This was a secondary analysis of cross-sectional 2016 and 2017 National Survey of Children's Health data. The sample included 19,482 U.S. children ages 0-5 years including 242 very low birthweight (VLBW) and 2205 low birthweight and/or preterm (LBW/PTB) children. Prematurity status was defined by VLBW (i.e., < 1500 g at birth) and LBW/PTB (i.e., 1500-2499 g at birth and/or born at < 37 weeks with or without LBW). Healthcare access measures were adequate health insurance, access to medical home, and developmental screening receipt. Adverse family impact measures were ≥ $1000 in annual out-of-pocket medical costs, having a parent cut-back or stop work, parental aggravation, maternal health not excellent, and paternal health not excellent. The relative risk of each healthcare access and adverse family impact measure was computed by prematurity status. Propensity weighted models were fit to estimate the average treatment effect of each healthcare access measure on each adverse family impact measure among children born prematurely (i.e., VLBW or LBW/PTB). RESULTS: Bivariate analysis results showed that VLBW and/or LBW/PTB children generally fared worse than other children in terms of medical home, having a parent cut-back or stop working, parental aggravation, and paternal health. Multivariable analysis results only showed, however, that VLBW children had a significantly higher risk than other children of having a parent cut-back or stop work. Adequate health insurance and medical home were each associated with reduced adjusted relative risk of ≥$1000 in annual out-of-pocket costs, having a parent cut-back or stop work, and parental aggravation among children born prematurely. CONCLUSIONS: This study's findings demonstrate better healthcare access is associated with reduced adverse family impact among U.S. children ages 0-5 years born prematurely. Population health initiatives should target children born prematurely and their families.

A Virtual Resiliency Intervention for Parents of Children with Autism: A Randomized Pilot Trial.

Parents of children with Autism experience high levels of stress. Resiliency is the ability to cope and adapt when faced with stressful events. This randomized, waitlist controlled pilot trial examines the feasibility, acceptability, and preliminary efficacy of an adapted virtual mind-body group intervention for parents of children with ASD. The intervention was feasible and acceptable. The immediate treatment group showed no difference in distress and greater improvement in resiliency and stress reactivity/coping relative to the delayed treatment group, (M difference 5.78; p = .038 and M difference 7.78; p = .001 respectively). Findings showed promising feasibility, acceptability, and preliminary efficacy for parents of children with ASD.