Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

04-06-2022 | Brief Report

Setting Families Up for Success: A Pilot Study of a Toolkit to Enhance the Autism Spectrum Disorder Diagnostic Evaluation Process

Auteurs: Rachel Haine-Schlagel, Christina Corsello, Barbara Caplan, Hilary Gould, Lauren Brookman-Frazee

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 3/2024

Abstract

Families of children with autism spectrum disorder (ASD) face challenges engaging in services following diagnosis. This study: (1) developed and implemented a toolkit to tailor ASD evaluation feedback to families’ needs, and (2) evaluated caregiver and provider perceptions of the toolkit. Focus groups with providers (N = 11) informed toolkit development. Seven providers participated in pilot training and implementation. Provider and caregiver toolkit perceptions were assessed using interviews, surveys, and a fidelity checklist. Toolkit strategies reflect focus group themes. Provider and caregiver ratings suggest the initial feasibility, acceptability, and utility of the toolkit. This toolkit may be feasible to implement in community settings and may increase caregiver satisfaction, though further refinements are needed to support service connection.

vorige artikel Brief Report: Response to Joint Attention and Object Imitation as Predictors of Expressive and Receptive Language Growth Rate in Young Children on the Autism Spectrum

volgende artikel Correction: Autism Prevalence and the Intersectionality of Assigned Sex at Birth, Race, and Ethnicity on Age of Diagnosis

Alleen toegankelijk voor geautoriseerde gebruikers

Aarons, G. A., Ehrhart, M. G., Farahnak, L. R., & Hurlburt, M. S. (2015). Leadership and organizational change for implementation (LOCI): A randomized mixed method pilot study of a leadership and organization development intervention for evidence-based practice implementation. Implementation Science, 10(1), 11. https://doi.org/10.1186/s13012-014-0192-yCrossRefPubMedPubMedCentral

Aarons, G. A., Hurlburt, M., & Horwitz, S. M. (2011). Advancing a conceptual model of evidence-based practice implementation in public service sectors. Administration and Policy in Mental Health and Mental Health Services Research, 38, 4–23. https://doi.org/10.1007/s10488-010-0327-7CrossRefPubMed

Azad, G. F., Singh, V., Kalb, L., Pinkett-Davis, M., & Landa, R. (2019). Child and family characteristics that predict autism spectrum disorder specialty clinic appointment attendance and alignment with providers. Journal of Autism and Developmental Disorders, 49(8), 3060–3072. https://doi.org/10.1007/s10803-019-04027-8CrossRefPubMed

Becker, K. D., Boustani, M., Gellatly, R., & Chorpita, B. F. (2018). Forty years of engagement research in children’s mental health services: Multidimensional measurement and practice elements. Journal of Clinical Child & Adolescent Psychology, 47(1), 1–23. https://doi.org/10.1080/15374416.2017.1326121CrossRef

Beebe, J. (2001) Rapid assessment process: An introduction. AltaMira Press

Boshoff, K., Gibbs, D., Phillips, R. L., Wiles, L., & Porter, L. (2019). A meta-synthesis of how parents of children with autism describe their experience of advocating for their children during the process of diagnosis. Health and Social Care in the Community, 27, e143–e157. https://doi.org/10.1111/hsc.12691CrossRefPubMed

Broder-Fingert, S., Qin, S., Goupil, J., Rosenberg, J., Augustyn, M., Blum, N., & Feinberg, E. (2019). A mixed-methods process evaluation of family navigation implementation for autism spectrum disorder. Autism, 23(5), 1288–1299. https://doi.org/10.1177/1362361318808460CrossRefPubMed

Brookman-Frazee, L., Stahmer, A. C., Lewis, K., Feder, J. D., & Reed, S. (2012). Building a research-community collaborative to improve community care for infants and toddlers at-risk for autism spectrum disorders. Journal of Community Psychology, 40(6), 715–734. https://doi.org/10.1002/jcop.21501CrossRefPubMedPubMedCentral

Buckman, R. A. (2005). Breaking bad news: The S-P-I-K-E-S strategy. Community Oncology, 2(2), 138–142. https://doi.org/10.1016/s1548-5315(11)70867-1MathSciNetCrossRef

Cunningham, C. E., Deal, K., Rimas, H., Buchanan, D. H., Gold, M., Sdao-Jarvie, K., & Boyle, M. (2008). Modeling the information preferences of parents of children with mental health problems: A discrete choice conjoint experiment. Journal of Abnormal Child Psychology, 36(7), 1123. https://doi.org/10.1007/s10802-008-9238-4CrossRefPubMed

Dawson, G., & Burner, K. (2011). Behavioral interventions in children and adolescents with autism spectrum disorder: A review of recent findings. Current Opinion in Pediatrics, 23(6), 616–620. https://doi.org/10.1097/MOP.0b013e32834cf082CrossRefPubMed

Dawson, G., Jones, E. J., Merkle, K., Venema, K., Lowry, R., Kamara, D., & Webb, S. J. (2012). Early behavioral intervention is associated with normalized brain activity in young children with autism. Journal of the American Academy of Child & Adolescent Psychiatry, 51(11), 1150–1159. https://doi.org/10.1016/j.jaac.2012.08.018CrossRef

Gale, R. C., Wu, J., Erhardt, T., Bounthavong, M., Reardon, C. M., Damschroder, L. J., & Midboe, A. M. (2019). Comparison of rapid vs in-depth qualitative analytic methods from a process evaluation of academic detailing in the Veterans Health Administration. Implementation Science, 14(11), 1–12. https://doi.org/10.1186/s13012-019-0853-yCrossRef

Haine-Schlagel, R., Brookman-Frazee, L., Janis, B., & Gordon, J. N. (2013). Evaluating a learning collaborative to implement evidence-based engagement practices in community-based services for young children. Child & Youth Care Forum, 42(5), 457–473. https://doi.org/10.1007/s10566-013-9210-5CrossRef

Haine-Schlagel, R., Martinez, J. I., Roesch, S. C., Bustos, C. E., & Janicki, C. (2018). Randomized trial of the Parent And Caregiver Active Participation Toolkit for child mental health treatment. Journal of Clinical Child & Adolescent Psychology, 47(sup1), S150–S160. https://doi.org/10.1080/15374416.2016.1183497CrossRef

Jacobson, J. W., Mulick, J. A., & Green, G. (1998). Cost–benefit estimates for early intensive behavioral intervention for young children with autism—General model and single state case. Behavioral Interventions, 13(4), 201–226. https://doi.org/10.1002/(SICI)1099-078X(199811)13:4%3c201::AID-BIN17%3e3.0.CO;2-RCrossRef

Kawamura, A., Mylopoulos, M., Orsino, A., Jimenez, E., & McNaughton, N. (2016). Promoting the development of adaptive expertise: Exploring a simulation model for sharing a diagnosis of autism with parents. Academic Medicine, 91(11), 1576–1581. https://doi.org/10.1097/ACM.0000000000001246CrossRefPubMed

Krauss, M. W., Gulley, S., Sciegaj, M., & Wells, N. (2003). Access to specialty medical care for children with mental retardation, autism, and other special health care needs. Mental Retardation, 41(5), 329–339. https://doi.org/10.1352/0047-6765(2003)41%3c329:ATSMCF%3e2.0.CO;2CrossRefPubMed

Lakens, D. (2013). Calculating and reporting effect sizes to facilitate cumulative science: a practical primer for t-tests and ANOVAs. Frontiers in Psychology. https://doi.org/10.3389/fpsyg.2013.00863CrossRefPubMedPubMedCentral

Leigh, J. P., & Du, J. (2015). Brief report: Forecasting the economic burden of autism in 2015 and 2025 in the United States. Journal of Autism and Developmental Disorders, 45(12), 4135–4139. https://doi.org/10.1007/s10803-015-2521-7CrossRefPubMed

Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bishop, S. (2012). Autism Diagnostic Observation Schedule (2nd ed.). Western Psychological Services.

McGrew, J. H., & Keyes, M. L. (2014). Caregiver stress during the first year after diagnosis of an Autism Spectrum Disorder. Research in Autism Spectrum Disorders, 8(10), 1373–1385. https://doi.org/10.1016/j.rasd.2014.07.011CrossRef

Mire, S. S., Gealy, W., Kubiszyn, T., Burridge, A. B., & Goin-Kochel, R. P. (2017). Parent perceptions about autism spectrum disorder influence treatment choices. Focus on Autism and Other Developmental Disabilities, 32(4), 305–318. https://doi.org/10.1177/1088357615610547CrossRef

Moodie-Dyer, A., Joyce, H. D., Anderson-Butcher, D., & Hoffman, J. (2014). Parent–caregiver experiences with the autism spectrum disorder service delivery system. Journal of Family Social Work, 17(4), 344–362. https://doi.org/10.1080/10522158.2014.903581CrossRef

Moullin, J. C., Dickson, K. S., Stadnick, N. A., Rabin, B., & Aarons, G. A. (2019). Systematic review of the Exploration, Preparation, Implementation, Sustainment (EPIS) framework. Implementation Science, 14(1), 1–16. https://doi.org/10.1186/s13012-018-0842-6CrossRefPubMedPubMedCentral

O’Connor, S., & Pettigrew, C. M. (2009). The barriers perceived to prevent the successful implementation of evidence-based practice by speech and language therapists. International Journal of Language & Communication Disorders, 44(6), 1018–1035. https://doi.org/10.1080/13682820802585967CrossRef

Oono, I., Honey, E., & McConachie, H. (2013). Parent-mediated early intervention for young children with autism spectrum disorder (ASD). Cochrane Database of Systematic Reviews. https://doi.org/10.1002/14651858.CD009774.pub2CrossRefPubMed

Palinkas, L. A., & Zatzick, D. (2019). Rapid assessment procedure informed clinical ethnography (RAPICE) in pragmatic clinical trials of mental health services implementation: Methods and applied case study. Administration and Policy in Mental Health and Mental Health Services Research, 46(2), 255–270. https://doi.org/10.1007/s10488-018-0909-3CrossRefPubMed

Palinkas, L. A., Aarons, G. A., Horwitz, S., Chamberlain, P., Hurlburt, M., & Landsverk, J. (2011). Mixed method designs in implementation research. Administration and Policy in Mental Health and Mental Health Services Research, 38, 44–53. https://doi.org/10.1007/s10488-010-0314-zCrossRefPubMed

Proctor, E., Silmere, H., Raghavan, R., Hovmand, P., Aarons, G., Bunger, A., & Hensley, M. (2011). Outcomes for implementation research: Conceptual distinctions, measurement challenges, and research agenda. Administration and Policy in Mental Health and Mental Health Services Research, 38(2), 65–76. https://doi.org/10.1007/s10488-010-0319-7CrossRefPubMed

Rouse, B., Schroeder, C., Stricklin, S. B., Hains, A., & Cox, M. (2008). Transition issues and barriers for children with significant disabilities and from culturally and linguistically diverse backgrounds. University of Kentucky, Human Development Institute.

Schertz, H. H., Odom, S. L., Baggett, K. M., & Sideris, J. H. (2013). Effects of join attention mediated learning for toddlers with autism spectrum disorders: An initial randomized controlled study. Early Childhood Research Quarterly, 28(2), 249–258. https://doi.org/10.1016/j.ecresq.2012.06.006CrossRef

Schreibman, L., Dawson, G., Stahmer, A. C., Landa, R., Rogers, S. J., McGee, G. G., & Halladay, A. (2015). Naturalistic developmental behavioral interventions: Empirically validated treatments for autism spectrum disorders. Journal of Autism and Developmental Disorders, 45(8), 2411–2428. https://doi.org/10.1007/s10803-015-2407-8CrossRefPubMedPubMedCentral

Shivers, C. M., Sonnier-Netto, L., & Lee, G. K. (2019). Needs and experiences of family caregivers of individuals with autism spectrum disorders across the lifespan. Journal of Policy and Practice in Intellectual Disabilities, 16(1), 21–29. https://doi.org/10.1111/jppi.12272CrossRef

Stahmer, A. C., Schreibman, L., & Cunningham, A. B. (2010). Towards a technology of treatment individualization for young children with autism spectrum disorders. Brain Research, 1380, 229–239. https://doi.org/10.1016/j.brainres.2010.09.043CrossRefPubMedPubMedCentral

Stahmer, A. C., Brookman-Frazee, L., Rieth, S. R., Stoner, J. T., Feder, J. D., Searcy, K., & Wang, T. (2017). Parent perceptions of an adapted evidence-based practice for toddlers with autism in a community setting. Autism: International Journal of Research and Practice, 21(2), 217–230. https://doi.org/10.1177/1362361316637580CrossRef

Stahmer, A. C., Vejnoska, S., Iadarola, S., Straiton, D., Segovia, F. R., Luelmo, P., Morgan, E. H., & Kasari, C. (2019). Caregiver voices: Cross-cultural input on improving access to Autism services. Journal of Racial and Ethnic Health Disparities, 6, 553–752. https://doi.org/10.1007/s40615-019-00575-yCrossRef

Twombly, E. C., Holtz, K. D., & Stringer, K. (2012). Using promotores programs to improve latino health outcomes: Implementation challenges for community-based nonprofit organizations. Journal of Social Service Research, 38(3), 305–312. https://doi.org/10.1080/01488376.2011.633804CrossRefPubMedPubMedCentral

Zuckerman, K. E., Lindly, O. J., & Sinche, B. (2016). Parent beliefs about the causes of learning and developmental problems among children with autism spectrum disorder: Results from a national survey. American Journal on Intellectual and Developmental Disabilities, 121(5), 432–447. https://doi.org/10.1352/1944-7558-121.5.432CrossRefPubMedPubMedCentral

Zwaigenbaum, L., Bauman, M. L., Chouerii, R., Kasari, C., Carter, A., Granpeesheh, D., & Natowicz, M. R. (2015). Early intervention for children with autism spectrum disorder under 3 years of age: Recommendations for practice and research. Pediatrics, 136(1), S60–S81. https://doi.org/10.1542/peds.2014-3667ECrossRefPubMedPubMedCentral

Zwingmann, J., Baile, W. F., Schmier, J. W., Bernhard, J., & Keller, M. (2017). Effects of patient-centered communication on anxiety, negative affect, and trust in the physician in delivering a cancer diagnosis: A randomized, experimental study. Cancer, 123(16), 3167–3175. https://doi.org/10.1002/cncr.30694CrossRefPubMed

Titel: Setting Families Up for Success: A Pilot Study of a Toolkit to Enhance the Autism Spectrum Disorder Diagnostic Evaluation Process
Auteurs: Rachel Haine-Schlagel
Christina Corsello
Barbara Caplan
Hilary Gould
Lauren Brookman-Frazee
Publicatiedatum: 04-06-2022
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 3/2024
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-022-05601-3

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 3/2024

Retinal Thinning in Adults with Autism Spectrum Disorder

Brief Report: Response to Joint Attention and Object Imitation as Predictors of Expressive and Receptive Language Growth Rate in Young Children on the Autism Spectrum

Factors Impacting Parental Quality of Life in Preschool Children on the Autism Spectrum

Parents’ Perceptions: Environments and the Contextual Strategies of Parents to Support the Participation of Children and Adolescents with Autism Spectrum Disorder—A Descriptive Population-Based Study from Switzerland

Pre- and Perinatal Risk Factors for Youth with Autism Spectrum Disorder Versus Youth with Other Mental Health Disorders

Differences in Praxis Errors in Autism Spectrum Disorder Compared to Developmental Coordination Disorder