45 results on '"Lindly, Olivia J"'
Search Results
2. Brief Report: Gender-Based Stereotypical Roles of Parents Caring for Autistic Children in Nigeria and South Africa
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Kehinde, Olumuyiwa Adekunle, Lindly, Olivia J., Ntombela, Berrington, and Hermann, Caroll
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- 2023
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3. Adaptation of a health literacy screener for computerized, self-administered use by U.S. adults
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Lindly, Olivia J., Wahl, Taylor A., Stotts, Noa M., and Shui, Amy M.
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- 2024
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4. Brief Report: Gender-Based Stereotypical Roles of Parents Caring for Autistic Children in Nigeria and South Africa
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Kehinde, Olumuyiwa Adekunle, Lindly, Olivia J., Ntombela, Berrington, and Hermann, Caroll
- Abstract
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.
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- 2023
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5. Pediatricians' Role in Healthcare for Latino Autistic Children: Shared Decision-Making versus 'You've Got to Do Everything on Your Own'
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Angell, Amber M., Lindly, Olivia J., Floríndez, Daniella, Floríndez, Lucía I., Duker, Leah I. Stein, Zuckerman, Katharine E., Yin, Larry, and Solomon, Olga
- Abstract
Despite documented healthcare disparities among Latino autistic children, little is known about how their families experience the autism "diagnostic odyssey." Pediatricians have a critical role in the "diagnostic odyssey," but when it becomes arduous, parents may also use complementary health approaches, particularly when conventional care does not adequately address their concerns. Shared decision-making is important in healthcare for autistic children, especially when parents also choose complementary health approaches; but little is known about shared decision-making among Latino parents of autistic children. We conducted a 12-month ethnography with 12 bicultural/bilingual Latino families of autistic children to understand their healthcare experiences (conventional and complementary health approaches) for their children, focusing on shared decision-making. Thematic analysis revealed: (1) most pediatricians were involved early in the "diagnostic odyssey" but were largely uninvolved thereafter; (2) conventional healthcare was satisfactory to the parents for physical health, but not developmental issues; and (3) parents who used complementary health approaches were more frustrated about a lack of autism information from pediatricians than those who did not. Finally, (4) we describe two exemplars of successful shared decision-making between Latino parents and pediatricians. Increasing pediatricians' autism knowledge and ability to discuss complementary health approaches may facilitate shared decision-making and reduce healthcare disparities for Latino autistic children.
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- 2023
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6. Cross-System Communication in Early Childhood Settings in the United States: An Exploratory Study Using the National Survey of Children's Health
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Roy, Shreya, Lindly, Olivia J., Berardinelli, Marilyn, and Martin, Alison J.
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Communication between a child's health care provider, child care and other community providers (cross-system communication) may facilitate access and referral to early intervention (EI). This study examined (a) factors associated with cross-system communication and (b) whether cross-system communication was associated with receiving EI among U.S. toddlers ages 1 to 2 years. This study used data from the National Survey of Children's Health 2016 and included 1,184 children of ages 1 to 2 years, whose parents indicated a need for cross-system communication. Dependent variable was having an EI plan. Primary independent variable was cross-system communication. Children who had cross-system communication had almost three times (2.9) higher odds of receiving EI services as compared to those who did not have cross-system communication (odds ratio [OR] = 2.9, 95% confidence interval [CI] = 1.2, 6.9, p = 0.014). This study found that cross-system communication was associated with receiving EI services for U.S. children of ages 1 to 2 years.
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- 2022
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7. Caregiver Strain among North American Parents of Children from the Autism Treatment Network Registry Call-Back Study
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Lindly, Olivia J., Shui, Amy M., Stotts, Noa M., and Kuhlthau, Karen A.
- Abstract
Elevated caregiver strain is common and linked to poor health in parents of children with autism. Yet, little research has examined caregiver strain longitudinally and in geographically diverse samples of parents whose children have autism. This study aimed to (1) examine change in caregiver strain and (2) determine correlates of improved caregiver strain in North American parents of children with autism. This was a secondary analysis of data from the Autism Treatment Network Registry Call-Back Study, conducted from 2015 to 2017 on a random sample of children with autism spectrum disorder at 12 clinical sites in the United States or Canada. Child assessments and parent-reported questionnaires were completed at two time points 1 year apart. Caregiver strain was assessed with the Caregiver Strain Questionnaire. In total, 368 children had caregiver strain data at both times. Mean caregiver strain in parents did not significantly change between Times 1 and 2 (mean difference = 0.05, t(360) = 0.1, p = 0.92). Improved caregiver strain between Times 1 and 2 was associated with improved child adaptive functioning and externalizing problem behaviors. Caregiver strain was persistent and multi-factorial. Parent training to manage challenging child behaviors and adaptively cope may benefit this vulnerable parent population.
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- 2022
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8. '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
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Lindly, Olivia J., Cabral, Jacqueline, Mohammed, Ruqayah, Garber, Ivonne, Mistry, Kamila B., and Kuhlthau, Karen A.
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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.
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- 2022
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9. '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
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Lindly, Olivia J., Cabral, Jacqueline, Mohammed, Ruqayah, Garber, Ivonne, Mistry, Kamila B., and Kuhlthau, Karen A.
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Medical care -- Utilization ,Parents -- Beliefs, opinions and attitudes -- Health aspects ,Pervasive developmental disorders -- Patient outcomes -- Demographic aspects -- Care and treatment ,Health literacy -- Evaluation ,Market trend/market analysis ,Health - Abstract
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., Author(s): Olivia J. Lindly [sup.1] [sup.2] [sup.3] , Jacqueline Cabral [sup.1] [sup.4] , Ruqayah Mohammed [sup.1] [sup.5] , Ivonne Garber [sup.3] , Kamila B. Mistry [sup.6] , Karen A. Kuhlthau [...]
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- 2022
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10. Vision Care among School-Aged Children with Autism Spectrum Disorder in North America: Findings from the Autism Treatment Network Registry Call-Back Study
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Lindly, Olivia J., Chan, James, Fenning, Rachel M., Farmer, Justin G., Neumeyer, Ann M., Wang, Paul, Swanson, Mark, Parker, Robert A., and Kuhlthau, Karen A.
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Children with autism spectrum disorder have a high risk of vision problems yet little is known about their vision care. This cross-sectional survey study, therefore, examined vision care among 351 children with autism spectrum disorder ages 6-17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Vision care variables were vision tested with pictures, shapes, or letters in the past 2 years; vision tested by an eye care practitioner (e.g. ophthalmologist, optometrist) in the past 2 years; prescribed corrective eyeglasses; and wore eyeglasses as recommended. Covariates included sociodemographic, child functioning, and family functioning variables. Multivariable models were fit for each vision care variable. Though 78% of children with autism spectrum disorder 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 spectrum disorder prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Multivariable analysis results demonstrated statistically significant differences in vision care among children with autism spectrum disorder by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism spectrum disorder do not receive recommended vision care and highlight potentially modifiable disparities in vision care.
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- 2021
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11. A systematic search and review of the discrimination in health care measure, and its adaptations
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Thorburn, Sheryl and Lindly, Olivia J.
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- 2022
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12. A Virtual Resiliency Intervention for Parents of Children with Autism: A Randomized Pilot Trial
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Kuhlthau, Karen A., Luberto, Christina M., Traeger, Lara, Millstein, Rachel A., Perez, Giselle K., Lindly, Olivia J., Chad-Friedman, Emma, Proszynski, Jacqueline, and Park, Elyse R.
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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 = 0.038 and M difference 7.78; p = 0.001 respectively). Findings showed promising feasibility, acceptability, and preliminary efficacy for parents of children with ASD.
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- 2020
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13. Perceived community disability stigma in multicultural, low-income populations: Measure development and validation
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Abdul-Chani, Monica M., Moreno, Christopher P., Reeder, Julie A., Zuckerman, Katharine E., and Lindly, Olivia J.
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- 2021
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14. Healthcare Access and Services Use among US Children with Autism Spectrum Disorder
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Lindly, Olivia J., Zuckerman, Katharine E., and Kuhlthau, Karen A.
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This study aimed to determine associations of healthcare access problems with services use among US children with autism spectrum disorder. We analyzed 2011-2014 National Health Interview Survey data on 651 children with autism spectrum disorder aged 2-17 years. There were three measures of healthcare access problems: (1) delays accessing healthcare, (2) difficulty affording healthcare, and (3) trouble finding a primary care provider. There were five service use measures: (1) [greater than or equal to]4 office visits, (2) [greater than or equal to]1 well-child visit, (3) flu vaccine, (4) prescription medication, and (5) [greater than or equal to]1 emergency department visit. Multivariable regression models estimated associations of [greater than or equal to]1 healthcare access problem with each service use variable and effect modification by socioeconomic status and race and ethnicity. Twenty-nine percent of children with autism spectrum disorder had [greater than or equal to]1 healthcare access problem. Having [greater than or equal to]1 healthcare access problem was associated with lower adjusted odds of [greater than or equal to]1 well-child visit or prescription medication use but higher adjusted odds of [greater than or equal to]4 office visits or [greater than or equal to]1 emergency department visit. No significant association was found for flu vaccine. Associations of healthcare access problems with emergency department use were most pronounced for higher socioeconomic status and White, non-Hispanic subgroups. Intervention, such as insurance expansion, is needed to improve healthcare access for children with autism spectrum disorder.
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- 2019
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15. 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
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Lindly, Olivia J., Martin, Alison J., and Lally, Kathryn
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- 2020
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16. A Virtual Resiliency Intervention for Parents of Children with Autism: A Randomized Pilot Trial
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Kuhlthau, Karen A., Luberto, Christina M., Traeger, Lara, Millstein, Rachel A., Perez, Giselle K., Lindly, Olivia J., and Chad-Friedman, Emma
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Parents -- Health aspects -- Psychological aspects -- Training ,Mind and body therapies -- Testing -- Health aspects -- Psychological aspects ,Resilience (Personality trait) -- Training -- Health aspects -- Psychological aspects ,Autistic children -- Family -- Health aspects -- Training -- Psychological aspects ,Stress (Psychology) -- Risk factors -- Demographic aspects ,Health - Abstract
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., Author(s): Karen A. Kuhlthau [sup.2] [sup.3] , Christina M. Luberto [sup.4] , Lara Traeger [sup.4] , Rachel A. Millstein [sup.1] [sup.4] , Giselle K. Perez [sup.1] [sup.4] , Olivia J. [...]
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- 2020
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17. Parent Perceptions of Community Autism Spectrum Disorder Stigma: Measure Validation and Associations in a Multi-Site Sample
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Zuckerman, Katharine E., Lindly, Olivia J., Reyes, Nuri M., Chavez, Alison E., Cobian, Maritza, Macias, Kristy, Reynolds, Ann M., and Smith, Kathryn A.
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In this study we developed a brief, English/Spanish bilingual parent-reported scale of perceived community autism spectrum disorder (ASD) stigma and tested it in a multi-site sample of Latino and non-Latino white parents of children with ASD. Confirmatory factor analysis of the scale supported a single factor solution with 8 items showing good internal consistency. Regression modeling suggested that stigma score was associated with unmet ASD care needs but not therapy hours or therapy types. Child public insurance, parent nativity, number of children with ASD in the household, parent-reported ASD severity, and family structure, were associated with higher stigma score. The scale and the scale's associations with service use may be useful to those attempting to measure or reduce ASD stigma.
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- 2018
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18. Parents' Use of Complementary Health Approaches for Young Children with Autism Spectrum Disorder
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Lindly, Olivia J., Thorburn, Sheryl, Heisler, Karen, Reyes, Nuri M., and Zuckerman, Katharine E.
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Knowledge of why parents use complementary health approaches (CHA) for children with autism spectrum disorder (ASD) is limited. We conducted a mixed methods study to better understand factors influencing parents' decision to use CHA for ASD. Parent-reported data about CHA use were collected on a probability sample of 352 young children with ASD in Denver, Colorado; Los Angeles, California; or Portland, Oregon. Follow-back interviews were conducted with 31 parents. CHA use was negatively associated with older child age and positively associated with parents' belief ASD has major consequences, living in Portland or Denver, and medication use. Nine themes help explain these results. Study findings may have utility for healthcare providers working with children with ASD and their families regarding CHA.
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- 2018
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19. Maternal beliefs about autism: A link between intervention services and autism severity in White and Latino mothers
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Reyes, Nuri M., Lindly, Olivia J., Chavez, Alison E., Folan, Ann, Macias, Kristy, Smith, Kathryn A., Reynolds, Ann, and Zuckerman, Katherine
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- 2018
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20. An Exploration of Health Behaviors in a Mind-Body Resilience Intervention for Parents of Children with Developmental Disabilities
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Millstein, Rachel A., Lindly, Olivia J., Luberto, Christina M., Perez, Giselle K., Schwartz, Gabrielle N., Kuhlthau, Karen, and Park, Elyse R.
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- 2020
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21. Healthcare access and adverse family impact among U.S. children ages 0–5 years by prematurity status
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Lindly, Olivia J., Crossman, Morgan K., Shui, Amy M., Kuo, Dennis Z., Earl, Kristen M., Kleven, Amber R., Perrin, James M., and Kuhlthau, Karen A.
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- 2020
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22. Adaptation of the Parents Taking Action program for Diné (Navajo) parents of children with autism.
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Lindly, Olivia J., Bear, Candi L. Running, Henderson, Davis E., Lopez, Kristina, Nozadi, Sara S., Vining, Christine, Bia, Shannon, Hill, Erin, and Leaf, Anna
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AUTISTIC children ,AUTISM in children ,INDIGENOUS children ,PARENTS ,PARENTING education ,COMMUNITY health workers ,WATERSHEDS - Abstract
Purpose: Neurodivergent children who are part of Indigenous communities in rural areas often have inequitable access to specialized services. Parent education and training programs can be used to help address these gaps in the service system. Yet few parent education and training programs exist for Indigenous parents of children with autism, including parents who identify as Diné (Navajo, meaning "The People"), the largest federated tribe in the United States. The Parents Taking Action (PTA) program is a parent education and training program delivered by community health workers that was originally developed for Latine parents of children with autism. The PTA program has been culturally adapted for other groups, and a growing evidence base exists supporting the program's feasibility, acceptability, and efficacy. We, therefore, sought to adapt the PTA program for Diné parents. Methods: This was a community-engaged case study on how the PTA program was adapted for Diné parents of children with autism. A community advisory board (CAB) comprised of 13 individuals including Diné parents of children with autism and professionals helped guide the adaptation process. We interviewed 15 Diné parents of a child with autism about their needs and preferences for the PTA program and used this information to adapt the PTA program. CAB workgroups used the Ecological Validity Framework to provide input on adaptations needed for the original PTA program materials. We also obtained input on the program's adaptation from Diné communities and a PTA research collaborative. Results: To incorporate the CAB's collective feedback on the PTA program adaptation, we modified terminology, visuals, and narratives. From the parent interview findings, we reduced the number of lessons and enabled community health workers to deliver lessons remotely. We further integrated feedback from the CAB workgroups in the adaptation of specific lessons. We addressed feedback from the larger community by expanding our project's catchment area and involving additional programs. Conclusion: This case study demonstrates how an evidence-based, parent education and training program was adapted for Diné parents of children with autism. The adapted Diné PTA program is being piloted. We will continue to improve Diné PTA by using the pilot's results and community input to inform future adaptations. [ABSTRACT FROM AUTHOR]
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- 2023
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23. Pediatricians' role in healthcare for Latino autistic children: Shared decision-making versus "You've got to do everything on your own".
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Angell, Amber M, Lindly, Olivia J, Floríndez, Daniella, Floríndez, Lucía I, Stein Duker, Leah I, Zuckerman, Katharine E, Yin, Larry, and Solomon, Olga
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DIAGNOSIS of autism , *TREATMENT of autism , *OCCUPATIONAL roles , *PARENT attitudes , *FRUSTRATION , *HISPANIC Americans , *PARENTS of children with disabilities , *CHILD development , *MEDICAL care , *INTERVIEWING , *PEDIATRICS , *FAMILY attitudes , *EXPERIENCE , *ETHNOLOGY research , *QUALITATIVE research , *DECISION making , *PATIENT-family relations , *SOUND recordings , *FIELD notes (Science) , *PSYCHOSOCIAL factors , *RESEARCH funding , *THEMATIC analysis , *HEALTH equity , *PARTICIPANT observation , *VIDEO recording - Abstract
Despite documented healthcare disparities among Latino autistic children, little is known about how their families experience the autism "diagnostic odyssey." Pediatricians have a critical role in the "diagnostic odyssey," but when it becomes arduous, parents may also use complementary health approaches, particularly when conventional care does not adequately address their concerns. Shared decision-making is important in healthcare for autistic children, especially when parents also choose complementary health approaches; but little is known about shared decision-making among Latino parents of autistic children. We conducted a 12-month ethnography with 12 bicultural/bilingual Latino families of autistic children to understand their healthcare experiences (conventional and complementary health approaches) for their children, focusing on shared decision-making. Thematic analysis revealed: (1) most pediatricians were involved early in the "diagnostic odyssey" but were largely uninvolved thereafter; (2) conventional healthcare was satisfactory to the parents for physical health, but not developmental issues; and (3) parents who used complementary health approaches were more frustrated about a lack of autism information from pediatricians than those who did not. Finally, (4) we describe two exemplars of successful shared decision-making between Latino parents and pediatricians. Increasing pediatricians' autism knowledge and ability to discuss complementary health approaches may facilitate shared decision-making and reduce healthcare disparities for Latino autistic children. 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. [ABSTRACT FROM AUTHOR]
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- 2023
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24. Parent Beliefs about the Causes of Learning and Developmental Problems among Children with Autism Spectrum Disorder: Results from a National Survey
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Zuckerman, Katharine E., Lindly, Olivia J., and Sinche, Brianna
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This study aimed to assess variation in parent beliefs about causes of learning and developmental problems in U.S. children with autism spectrum disorder, using data from a nationally representative survey. Results showed that beliefs about a genetic/hereditary cause of learning/developmental problems were most common, but nearly as many parents believed in exposure causes. Forty present of parents had no definite causal beliefs. On multivariate analysis, parents who were non-White, publicly insured or poor were more likely than other parents to endorse exposure causes, or less likely to endorse genetic causes, compared to other parents. Further research should assess how these beliefs modify health care quality or services use.
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- 2016
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25. Parent Perceptions of Community Autism Spectrum Disorder Stigma: Measure Validation and Associations in a Multi-site Sample
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Zuckerman, Katharine E., Lindly, Olivia J., Reyes, Nuri M., Chavez, Alison E., Cobian, Maritza, Macias, Kristy, and Reynolds, Ann M.
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Autistic children -- Health aspects ,Medical care quality -- Analysis ,Pervasive developmental disorders -- Care and treatment -- Diagnosis -- Research ,Health - Abstract
In this study we developed a brief, English/Spanish bilingual parent-reported scale of perceived community autism spectrum disorder (ASD) stigma and tested it in a multi-site sample of Latino and non-Latino white parents of children with ASD. Confirmatory factor analysis of the scale supported a single factor solution with 8 items showing good internal consistency. Regression modeling suggested that stigma score was associated with unmet ASD care needs but not therapy hours or therapy types. Child public insurance, parent nativity, number of children with ASD in the household, parent-reported ASD severity, and family structure, were associated with higher stigma score. The scale and the scale's associations with service use may be useful to those attempting to measure or reduce ASD stigma., Author(s): Katharine E. Zuckerman [sup.1] [sup.2] , Olivia J. Lindly [sup.1] [sup.10] , Nuri M. Reyes [sup.4] , Alison E. Chavez [sup.1] [sup.5] , Maritza Cobian [sup.1] [sup.6] , Kristy [...]
- Published
- 2018
- Full Text
- View/download PDF
26. Parents' Use of Complementary Health Approaches for Young Children with Autism Spectrum Disorder
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Lindly, Olivia J., Thorburn, Sheryl, Heisler, Karen, Reyes, Nuri M., and Zuckerman, Katharine E.
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Parenting -- Methods -- Research ,Autistic children -- Behavior -- Care and treatment -- Research ,Pervasive developmental disorders -- Care and treatment -- Research ,Health - Abstract
Knowledge of why parents use complementary health approaches (CHA) for children with autism spectrum disorder (ASD) is limited. We conducted a mixed methods study to better understand factors influencing parents' decision to use CHA for ASD. Parent-reported data about CHA use were collected on a probability sample of 352 young children with ASD in Denver, Colorado; Los Angeles, California; or Portland, Oregon. Follow-back interviews were conducted with 31 parents. CHA use was negatively associated with older child age and positively associated with parents' belief ASD has major consequences, living in Portland or Denver, and medication use. Nine themes help explain these results. Study findings may have utility for healthcare providers working with children with ASD and their families regarding CHA., Author(s): Olivia J. Lindly [sup.1] [sup.3] , Sheryl Thorburn [sup.2] , Karen Heisler [sup.5] , Nuri M. Reyes [sup.4] , Katharine E. Zuckerman [sup.3] Author Affiliations: (Aff1) 0000 0004 0386 [...]
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- 2018
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27. Shared Decision Making in the Care of Children with Developmental and Behavioral Disorders
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Lipstein, Ellen A., Lindly, Olivia J., Anixt, Julia S., Britto, Maria T., and Zuckerman, Katharine E.
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Medical care -- Analysis -- United States ,Decision making -- Analysis ,Health care industry - Abstract
Objective Shared decision making (SDM) is most needed when there are multiple treatment options and no 'right' choice. As with quality and experience of care, frequency of SDM may vary by health condition. The objectives of this study were (1) to compare parent report of SDM between a physical and a behavioral health condition and; (2) to compare parent report of SDM between two different behavioral health conditions. Methods Data on children age 3-17 years with asthma, attention deficit/hyperactivity disorder (ADHD), and/or autism spectrum disorder (ASD) were drawn from the 2009/10 National Survey of Children with Special Health Care Needs. Weighted logistic regression was used to compare a parent-reported, composite measure of SDM. Analyses controlled for sociodemographic factors that may influence experience of SDM. Results Compared to parents of children with asthma, parents of children with ADHD were significantly less likely to report experiencing consistent SDM (AOR 0.73). Compared to parents of children with ADHD, those of children with ASD had significantly lower odds of experiencing consistent SDM (AOR 0.59). Those with both ADHD and ASD had the same odds as those with ASD alone of experiencing consistent SDM. Conclusion Use of SDM is particularly limited in developmental and behavioral conditions, such as ADHD and ASD. These data suggest that challenges to implementing SDM may include disease type, complexity, and use of specialty care. Research to identify specific barriers and facilitators of SDM is needed to inform interventions that will promote SDM in developmental and behavioral conditions., Author(s): Ellen A. Lipstein[sup.1] [sup.2] [sup.3] , Olivia J. Lindly[sup.4] , Julia S. Anixt[sup.2] [sup.3] [sup.5] , Maria T. Britto[sup.1] [sup.2] [sup.3] , Katharine E. Zuckerman[sup.6] Author Affiliations: (1) Division [...]
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- 2016
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28. Clarifying the Predictive Value of Family-Centered Care and Shared Decision Making for Pediatric Healthcare Outcomes Using the Medical Expenditure Panel Survey
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Lindly, Olivia J., Zuckerman, Katharine E., and Mistry, Kamila B.
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- 2017
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29. "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.
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Lindly, Olivia J., Henderson, Davis E., Vining, Christine B., Running Bear, Candi L., Nozadi, Sara S., and Bia, Shannon
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- 2023
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30. Cross-System Communication in Early Childhood Settings in the United States: An Exploratory Study Using the National Survey of Children's Health.
- Author
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Roy, Shreya, Lindly, Olivia J., Berardinelli, Marilyn, and Martin, Alison J.
- Subjects
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STATISTICS , *RESEARCH , *SPECIAL education , *CONFIDENCE intervals , *PHYSICIAN-patient relations , *CROSS-sectional method , *MULTIVARIATE analysis , *SURVEYS , *COMMUNICATION , *EARLY intervention (Education) , *QUESTIONNAIRES , *LOGISTIC regression analysis , *ODDS ratio , *SECONDARY analysis - Abstract
Communication between a child's health care provider, child care and other community providers (cross-system communication) may facilitate access and referral to early intervention (EI). This study examined (a) factors associated with cross-system communication and (b) whether cross-system communication was associated with receiving EI among U.S. toddlers ages 1 to 2 years. This study used data from the National Survey of Children's Health 2016 and included 1,184 children of ages 1 to 2 years, whose parents indicated a need for cross-system communication. Dependent variable was having an EI plan. Primary independent variable was cross-system communication. Children who had cross-system communication had almost three times (2.9) higher odds of receiving EI services as compared to those who did not have cross-system communication (odds ratio [OR] = 2.9, 95% confidence interval [CI] = 1.2, 6.9, p =.014). This study found that cross-system communication was associated with receiving EI services for U.S. children of ages 1 to 2 years. [ABSTRACT FROM AUTHOR]
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- 2022
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31. Caregiver strain among North American parents of children from the Autism Treatment Network Registry Call-Back Study.
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Lindly, Olivia J., Shui, Amy M., Stotts, Noa M., and Kuhlthau, Karen A.
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- *
EDUCATION of parents , *REPORTING of diseases , *PARENTS of children with disabilities , *BURDEN of care , *CHILD behavior , *AUTISM in children , *PSYCHOSOCIAL factors , *PSYCHOLOGY of caregivers , *QUESTIONNAIRES , *DESCRIPTIVE statistics , *STATISTICAL sampling , *PSYCHOLOGICAL adaptation , *NORTH Americans , *SECONDARY analysis - Abstract
Elevated caregiver strain is common and linked to poor health in parents of children with autism. Yet, little research has examined caregiver strain longitudinally and in geographically diverse samples of parents whose children have autism. This study aimed to (1) examine change in caregiver strain and (2) determine correlates of improved caregiver strain in North American parents of children with autism. This was a secondary analysis of data from the Autism Treatment Network Registry Call-Back Study, conducted from 2015 to 2017 on a random sample of children with autism spectrum disorder at 12 clinical sites in the United States or Canada. Child assessments and parent-reported questionnaires were completed at two time points 1year apart. Caregiver strain was assessed with the Caregiver Strain Questionnaire. In total, 368 children had caregiver strain data at both times. Mean caregiver strain in parents did not significantly change between Times 1 and 2 (mean difference=0.05, t(360)=0.1, p=0.92). Improved caregiver strain between Times 1 and 2 was associated with improved child adaptive functioning and externalizing problem behaviors. Caregiver strain was persistent and multi-factorial. Parent training to manage challenging child behaviors and adaptively cope may benefit this vulnerable parent population. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
32. Vision care among school-aged children with autism spectrum disorder in North America: Findings from the Autism Treatment Network Registry Call-Back Study.
- Author
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Lindly, Olivia J, Chan, James, Fenning, Rachel M, Farmer, Justin G, Neumeyer, Ann M, Wang, Paul, Swanson, Mark, Parker, Robert A, and Kuhlthau, Karen A
- Subjects
- *
EYEGLASSES , *HEALTH services accessibility , *EYE care , *CROSS-sectional method , *HEALTH status indicators , *VISION testing , *SURVEYS , *SOCIOECONOMIC factors , *COMMUNICATIVE disorders , *AUTISM , *VISION disorders , *PEOPLE with intellectual disabilities , *PARENTS , *EDUCATIONAL attainment , *CHILDREN - Abstract
Children with autism spectrum disorder have a high risk of vision problems yet little is known about their vision care. This cross-sectional survey study, therefore, examined vision care among 351 children with autism spectrum disorder ages 6–17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Vision care variables were vision tested with pictures, shapes, or letters in the past 2 years; vision tested by an eye care practitioner (e.g. ophthalmologist, optometrist) in the past 2 years; prescribed corrective eyeglasses; and wore eyeglasses as recommended. Covariates included sociodemographic, child functioning, and family functioning variables. Multivariable models were fit for each vision care variable. Though 78% of children with autism spectrum disorder 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 spectrum disorder prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Multivariable analysis results demonstrated statistically significant differences in vision care among children with autism spectrum disorder by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism spectrum disorder do not receive recommended vision care and highlight potentially modifiable disparities in vision care. 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. [ABSTRACT FROM AUTHOR]
- Published
- 2021
- Full Text
- View/download PDF
33. Service Use Classes Among School-aged Children From the Autism Treatment Network Registry.
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Lindly, Olivia J., Chan, James, Levy, Susan E., Parker, Robert A., and Kuhlthau, Karen A.
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- *
TREATMENT of autism , *CHILD development , *CHILD behavior , *HEALTH status indicators , *LONGITUDINAL method , *MEDICAL care use , *MULTIVARIATE analysis , *SPECIAL education , *SOCIOECONOMIC factors , *CROSS-sectional method , *DESCRIPTIVE statistics , *CHILDREN - Abstract
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. [ABSTRACT FROM AUTHOR]
- Published
- 2020
- Full Text
- View/download PDF
34. Families' Experiences With Family Navigation Services in the Autism Treatment Network.
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Crossman, Morgan K., Lindly, Olivia J., Chan, James, Eaves, Megan, Kuhlthau, Karen A., Parker, Robert A., Coury, Daniel L., Zand, Debra H., Nowinski, Lisa A., and Smith, Kathryn
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- *
TREATMENT of autism , *BUSINESS networks , *CHILDREN'S health , *FAMILY medicine , *HEALTH services accessibility , *RESEARCH methodology , *MEDICAL societies , *FAMILY relations , *BURDEN of care , *PARENT attitudes , *FAMILY attitudes , *DESCRIPTIVE statistics , *CHILDREN - Abstract
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. [ABSTRACT FROM AUTHOR]
- Published
- 2020
- Full Text
- View/download PDF
35. Toward Equitable Health Outcomes for Diverse Children With ADHD and Their Families.
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Lindly, Olivia J., Nasol, Elisa, Tarazi, Chelsey L., Chavez, Alison E., and Zuckerman, Katharine E.
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HEALTH services accessibility ,SOCIAL determinants of health ,COMMUNICATION barriers ,CULTURAL pluralism ,HEALTH status indicators ,RACE ,MEDICAL care costs ,ATTENTION-deficit hyperactivity disorder ,SOCIOECONOMIC factors ,PATIENTS' rights ,ETHNIC groups ,CHILDREN - Abstract
In the article, the authors discuss the financial effects and access to care in children with attention-deficit/hyperactivity disorder (ADHD) in non-English primary language households and in English primary language households in the U.S. Other topics include the study showing that parents of young adults with ADHD experienced higher monetary and non-monetary impact than those with youth with no ADHD.
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- 2021
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36. Healthcare access and services use among US children with autism spectrum disorder.
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Lindly, Olivia J, Zuckerman, Katharine E, and Kuhlthau, Karen A
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- *
AUTISM in children , *HEALTH services accessibility , *HOSPITAL emergency services , *HEALTH insurance , *MEDICAL care use , *MEDICAL care costs , *RACE , *MULTIPLE regression analysis , *SOCIOECONOMIC factors , *ODDS ratio - Abstract
This study aimed to determine associations of healthcare access problems with services use among US children with autism spectrum disorder. We analyzed 2011–2014 National Health Interview Survey data on 651 children with autism spectrum disorder aged 2–17 years. There were three measures of healthcare access problems: (1) delays accessing healthcare, (2) difficulty affording healthcare, and (3) trouble finding a primary care provider. There were five service use measures: (1) ⩾4 office visits, (2) ⩾1 well-child visit, (3) flu vaccine, (4) prescription medication, and (5) ⩾1 emergency department visit. Multivariable regression models estimated associations of ⩾1 healthcare access problem with each service use variable and effect modification by socioeconomic status and race and ethnicity. Twenty-nine percent of children with autism spectrum disorder had ⩾1 healthcare access problem. Having ⩾1 healthcare access problem was associated with lower adjusted odds of ⩾1 well-child visit or prescription medication use but higher adjusted odds of ⩾4 office visits or ⩾1 emergency department visit. No significant association was found for flu vaccine. Associations of healthcare access problems with emergency department use were most pronounced for higher socioeconomic status and White, non-Hispanic subgroups. Intervention, such as insurance expansion, is needed to improve healthcare access for children with autism spectrum disorder. [ABSTRACT FROM AUTHOR]
- Published
- 2019
- Full Text
- View/download PDF
37. Unmet Need and Financial Impact Disparities for US Children with ADHD.
- Author
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Nasol, Elisa, Lindly, Olivia J., Chavez, Alison E., and Zuckerman, Katharine E.
- Subjects
ATTENTION-deficit hyperactivity disorder ,CHILD health services ,HEALTH services accessibility ,NEEDS assessment ,TOURETTE syndrome ,LOGISTIC regression analysis ,ECONOMIC status ,SOCIOECONOMIC factors ,HEALTH & social status - Abstract
The 5.1million US children with attention-deficit/hyperactivity disorder (ADHD) have pronounced needs in education, occupational and speech therapy, and medical and behavioral treatments. Given known associations of ADHD diagnosis with race/ethnicity and parent education, this study aimed to assess how measures of socioeconomic status correlate with both adverse family financial impact of ADHD and disparities in unmet treatment need for ADHD. Secondary analysis of children ages 8 to 17years whose households participated in the 2014 National Survey of the Diagnosis and Treatment of Attention-Deficit/Hyperactivity Disorder and Tourette Syndrome. Using bivariate testing, we examined associations among measures of socioeconomic status with unmet ADHD treatment need and family financial impact. Logistic regression models estimated the odds of having unmet treatment need, adjusting for demographic factors and family financial impact. Among US school-aged children with a current ADHD diagnosis, 44.3% experienced an adverse family financial impact from ADHD, and 11.6% had unmet need for ADHD treatment. Children with younger age at first ADHD diagnosis were more likely to experience adverse family financial impact. Children from non-English-speaking households were less likely to report unmet need compared to those from primarily English-speaking households. The adjusted odds of unmet need were twice as great among those who reported adverse family financial impact. Deeper understanding of the influence of the household language is important in ADHD needs assessments. Considering overall family financial circumstances may also be pertinent, particularly as children age, because earlier diagnosiswas associated with adverse financial outcomes. These findings could shape future clinic policies for targeting community resources. [ABSTRACT FROM AUTHOR]
- Published
- 2019
- Full Text
- View/download PDF
38. Disparities in Diagnosis and Treatment of Autism in Latino and Non-Latino White Families.
- Author
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Zuckerman, Katharine E., Lindly, Olivia J., Reyes, Nuri M., Chavez, Alison E., Macias, Kristy, and Smith, Kathryn N.
- Subjects
- *
DIAGNOSIS of autism , *TREATMENT of autism , *HEALTH services accessibility , *HEALTH status indicators , *HISPANIC Americans , *RESEARCH methodology , *MULTIVARIATE analysis , *QUESTIONNAIRES , *RACE , *WHITE people , *COMMUNICATION barriers , *DESCRIPTIVE statistics - Abstract
OBJECTIVES: To compare barriers to autism spectrum disorder (ASD) diagnosis and current ASD-related service use among non-Latino white (NLW) families and Latino families with English proficiency (L-EP) or limited English proficiency (L-LEP). METHODS: We conducted a mixed-mode survey of families of children with confirmed ASD seen at specialty clinics in 3 United States cities. Bivariate and multivariate analyses compared barriers to ASD diagnosis, current service use, and unmet therapy need among NLW, L-EP, and L-LEP families. RESULTS: Overall, barriers to ASD diagnosis were prevalent: families (n = 352) experienced a mean of 8 of 15 barriers to ASD diagnosis. The most prevalent barriers overall were "stress of diagnostic process," "parent knowledge about ASD," and "understanding medical system." Compared with NLW families, L-LEP families were more likely to experience barriers related to knowledge about ASD and trust in providers. Children in L-LEP families also had fewer current therapy hours and more unmet therapy needs than children in NLW families. L-EP families' barriers and treatment services use profile was more similar to NLW than to L-LEP families. CONCLUSIONS: English proficiency was an important marker for barriers to ASD diagnosis and treatment in Latinos. Increasing ASD-related knowledge and provider trust may decrease disparities in the diagnosis and treatment of ASD among US Latinos. [ABSTRACT FROM AUTHOR]
- Published
- 2017
- Full Text
- View/download PDF
39. Unmet Health Services Needs Among US Children with Developmental Disabilities: Associations with Family Impact and Child Functioning.
- Author
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Lindly, Olivia J., Chavez, Alison E., and Zuckerman, Katharine E.
- Published
- 2016
- Full Text
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40. Parent Beliefs About the Causes of Learning and Developmental Problems Among Children With Autism Spectrum Disorder: Results From a National Survey.
- Author
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Zuckerman, Katharine E., Lindly, Olivia J., and Sinche, Brianna
- Subjects
AUTISM spectrum disorders ,LEARNING problems ,DEVELOPMENTAL delay ,SOCIOECONOMIC factors ,MEDICAL quality control ,COMPARATIVE studies ,DEVELOPMENTAL disabilities ,HEALTH attitudes ,LEARNING disabilities ,RESEARCH methodology ,MEDICAL cooperation ,PARENTS ,RESEARCH ,RESEARCH funding ,EVALUATION research - Abstract
Copyright of American Journal on Intellectual & Developmental Disabilities is the property of American Association on Intellectual & Developmental Disabilities and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
- Published
- 2016
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41. Parent Health Beliefs, Social Determinants of Health, and Child Health Services Utilization Among US School-age Children With Autism.
- Author
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Zuckerman, Katharine E., Lindly, Olivia J., Sinche, Brianna K., and Nicolaidis, Christina
- Published
- 2015
- Full Text
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42. Disparities in Familiarity With Developmental Disabilities Among Low-Income Parents.
- Author
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Zuckerman KE, Chavez AE, Regalado Murillo C, Lindly OJ, and Reeder JA
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- Adolescent, Adult, Aged, Attention Deficit Disorder with Hyperactivity, Autism Spectrum Disorder, Cerebral Palsy, Cleft Lip, Cleft Palate, Down Syndrome, Female, Food Assistance, Health Services Accessibility, Humans, Intellectual Disability, Language, Male, Middle Aged, Multivariate Analysis, Oregon, Poverty, Rett Syndrome, Surveys and Questionnaires, Young Adult, Developmental Disabilities, Health Knowledge, Attitudes, Practice ethnology, Hispanic or Latino, Parents, White People
- Abstract
Objective: Parent knowledge about developmental disabilities (DDs) may facilitate access to DD care; however, parents may vary in their knowledge and familiarity with common DDs. This study aimed to assess racial/ethnic and language differences in low-income families' familiarity, knowledge, and personal experience with DDs., Methods: We conducted a child development survey among 539 low-income parents of young children attending visits at the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) in 6 Oregon counties in 2015. Survey items assessed parent familiarity with early signs of DDs, self-reported knowledge about DDs, and personal experience with a friend or family member with a DD. Bivariable and multivariable analyses assessed differences in outcomes among non-Latino white (white), Latino English-proficient (Latino-EP), Latino limited-English-proficient (Latino-LEP), and non-Latino other race English-proficient (other race) parents., Results: Overall, parent participants correctly identified 64.7% of early signs of DDs. White parents correctly identified the most early signs, even after adjustment for sociodemographic factors. Compared with white parents, Latino-LEP, Latino-EP, and other race parents were less likely to have heard of prevalent DDs, such as attention-deficit/hyperactivity disorder and autism, and less likely to have a friend or family member with a DD., Conclusions: Low-income Latino-LEP and other race parents have less familiarity or personal experience with DDs and are less aware of early signs of DDs compared to low-income white parents. Study findings suggest that interventions to reduce disparities in DD diagnosis and treatment should include increasing information transfer to parents in racial/ethnic and language minority communities., (Copyright © 2018 Academic Pediatric Association. All rights reserved.)
- Published
- 2018
- Full Text
- View/download PDF
43. Family-Centered Care Measurement and Associations With Unmet Health Care Need Among US Children.
- Author
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Lindly OJ, Geldhof GJ, Acock AC, Sakuma KK, Zuckerman KE, and Thorburn S
- Subjects
- Adolescent, Child, Child, Preschool, Decision Making, Factor Analysis, Statistical, Family psychology, Health Services Needs and Demand, Humans, Infant, Longitudinal Studies, Quality of Health Care, United States, Child Health Services, Needs Assessment, Patient-Centered Care, Professional-Family Relations, Surveys and Questionnaires standards
- Abstract
Objective: Family-centered care (FCC), including shared decision making (SDM), has become increasingly emphasized in pediatric health care delivery. Past studies using national surveys have used different FCC measurement approaches without determining their validity. We, therefore, sought to develop an FCC measurement model with Medical Expenditure Panel Survey (MEPS) items previously used to assess FCC or SDM; and to determine temporal associations of FCC with unmet health care need., Methods: Four longitudinal MEPS data files (2007-2011) were combined. The study sample included 15,764 US children aged 0 to 17 years. Eight items assessed FCC, and 5 items assessed unmet health care need. We performed exploratory factor analyses to develop an FCC measurement model and fit a cross-lagged structural equation model to determine temporal associations between FCC and unmet health care need., Results: Results supported a 2-factor FCC model including family-provider communication and SDM. The family-provider communication factor was indicated by items reflecting general communication between the child's doctor and family. The SDM factor was indicated by items reflecting decision-making about the child's health care. Adjusted cross-lagged structural equation model results showed family-provider communication and SDM were associated with a reduced likelihood of unmet health care need the following year. Unmet health care need was not significantly associated with family-provider communication or SDM the subsequent year., Conclusions: Study results support differentiating between family-provider communication and SDM as interrelated aspects of FCC in future pediatric health care quality measurement and improvement. Family-provider communication and SDM may reduce the likelihood of unmet health care need the following year among US children., (Copyright © 2016 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)
- Published
- 2017
- Full Text
- View/download PDF
44. Variation in Educational Services Receipt Among US Children With Developmental Conditions.
- Author
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Lindly OJ, Sinche BK, and Zuckerman KE
- Subjects
- Adolescent, Child, Educational Status, Family Characteristics, Female, Humans, Logistic Models, Male, Multivariate Analysis, Odds Ratio, Risk Factors, Sex Factors, United States, Autism Spectrum Disorder, Developmental Disabilities, Early Intervention, Educational statistics & numerical data, Education of Intellectually Disabled statistics & numerical data, Education, Special statistics & numerical data, Income statistics & numerical data, Insurance, Health statistics & numerical data, Intellectual Disability
- Abstract
Objective: To examine the relationship between ease of access to needed community-based services (ease of access) and educational services receipt, and variation in educational services receipt by sociodemographic and need factors among a nationally representative sample of children with autism spectrum disorder (ASD), developmental delay (DD), and/or intellectual disability (ID)., Methods: Data from the 2009-2010 National Survey of Children with Special Health Care Needs were linked to the 2011 Survey of Pathways to Diagnosis and Services on a sample of 3502 US children aged 6 to 17 years with ASD, DD, and/or ID. Descriptive statistics, chi-square tests, and multivariable logistic regression models were used to determine associations of educational services receipt with ease of access and sociodemographic and need factors., Results: Among children with developmental conditions, nearly half (49.7%) lacked easy access to services, and 16.9% did not have an individualized education program (IEP). Among children with an IEP, those with ease of access were more likely to have an IEP that addressed parent concerns about the child's development and education than those unable to easily access services (adjusted odds ratio 2.77; 95% confidence interval 1.71-4.49). Need factors, including functional limitations status, care coordination need, developmental condition type, and early intervention receipt, were significantly associated with educational services receipt., Conclusions: Cross-systems initiatives facilitating service access remain important to ensuring the developmental needs of children with ASD, DD, and/or ID are met. Increased interprofessional collaboration promoting quality educational services receipt for children diagnosed with developmental conditions may further reduce disparities., (Copyright © 2015 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)
- Published
- 2015
- Full Text
- View/download PDF
45. Family impacts among children with autism spectrum disorder: the role of health care quality.
- Author
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Zuckerman KE, Lindly OJ, Bethell CD, and Kuhlthau K
- Subjects
- Adolescent, Autism Spectrum Disorder economics, Child, Child, Preschool, Cost of Illness, Employment, Family, Female, Health Surveys, Humans, Male, Regression Analysis, Socioeconomic Factors, United States, Autism Spectrum Disorder therapy, Disabled Children statistics & numerical data, Healthcare Disparities statistics & numerical data, Quality of Health Care statistics & numerical data
- Abstract
Objective: To compare health care quality and family employment and financial impacts among children with special health care needs (CSHCN) with autism spectrum disorder (CSHCN + ASD), CSHCN with functional limitations (CSHCN + FL), and CSHCN lacking these conditions (other CSHCN); to test whether high health care quality was associated with reduced family impacts among CSHCN + ASD., Methods: Data from the 2009-2010 National Survey of CSHCN were used to compare 3025 CSHCN + ASD, 6505 CSHCN + FL, and 28,296 other CSHCN. Weighted multivariate logistic regression analyses examined 6 age-relevant, federally defined health care quality indicators and 5 family financial and employment impact indicators. Two composite measures were additionally used: 1) receipt of care that met all age-relevant quality indicators; and 2) had ≥ 2 of the 5 adverse family impacts., Results: Across all health care quality indicators, CSHCN + ASD fared poorly, with only 7.4% meeting all age-relevant indicators. CSHCN + ASD had worse health care quality than other CSHCN, including CSHCN + FL. CSHCN + ASD also had high rates of adverse family impact, with over half experiencing ≥ 2 adverse impacts. Rates of adverse family impact were higher in CSHCN + ASD than other CSHCN, including CSHCN + FL. Among CSHCN + ASD, those whose health care that met federal quality standards were less likely to have multiple adverse family impacts than CSHCN + ASD whose health care did not meet federal quality standards., Conclusions: CSHCN + ASD are more prone to experience poor health care quality and family impacts than other CSHCN, even CSHCN + FL. Receipt of care meeting federal quality standards may potentially lessen adverse family impacts for CSHCN + ASD., (Copyright © 2014 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)
- Published
- 2014
- Full Text
- View/download PDF
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