Hoe ouders tijdens een screening voor autismespectrumstoornissen betekenis verlenen aan het gedrag van hun kind: een longitudinaal kwalitatief onderzoek

Thomas I. Mackie1, Ana J. Schaefer1, Leah Ramella2, Alice S. Carter3, Abbey Eisenhower3, Manuel E. Jiménez4, Angel Fettig5, R. Christopher Sheldrick2
1Department of Health Behavior, Society and Policy, Rutgers School of Public Health, Piscataway, NJ, Verenigde Staten
2Department of Health Law, Policy and Management, School of Public Health, Boston University, Boston, Verenigde Staten
3Department of Psychology, University of Massachusetts Boston, Boston, Verenigde Staten
4Department of Pediatrics, Rutgers Robert Wood Johnson Medical School, New Brunswick, NJ, Verenigde Staten
5College of Education – Special Education, University of Washington, Seattle, Verenigde Staten

Tóm tắt

Từ khóa


Tài liệu tham khảo

Abbott, M., Bernard, P., & Forge, J. (2012). Communicating a diagnosis of autism spectrum disorder—a qualitative study of parents’ experiences. Clinical Child Psychology and Psychiatry, 18(3), 370–382. https://doi.org/10.1177/1359104512455813.

American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders, (DSM-5®) (5e druk.). Washington, DC: American Psychiatric Association.

Avdi, E., Griffin, C., & Brough, S. (2000). Parents’ constructions of professional knowledge, expertise and authority during assessment and diagnosis of their child for an autistic spectrum disorder. British Journal of Medical Psychology, 73(3), 327–338.

Basco, W. T., & Rimsza, M. E. (2013). Pediatrician workforce policy statement. Pediatrics, 132(2), 390–397. https://doi.org/10.1542/peds.2013-1517.

Best, J. (2017). Typification and social problems construction (pag. 3–10). Abingdon: Routledge. Images of issues

Bisgaier, J., Levinson, D., Cutts, D. B., & Rhodes, K. V. (2011). Access to autism evaluation appointments with developmentalbehavioral and neurodevelopmental subspecialists. Archives of Pediatrics Adolescent Medicine, 165(7), 673–674. https://doi.org/10.1001/archpediatrics.2011.90.

Bolton, P. F., Golding, J., Emond, A., & Steer, C. D. (2012). Autism spectrum disorder and autistic traits in the Avon longitudinal study of parents and children: precursors and early signs. Journal of the American Academy of Child & Adolescent Psychiatry, 51(3), 249–260.e2. https://doi.org/10.1016/j.jaac.2011.12.009.

Braddock, C. H., Fihn, S. D., Levinson, W., Jonsen, A. R., & Pearlman, R. A. (1997). How doctors and patients discuss routine clinical decisions: informed decision making in the outpatient setting. Journal of General Internal Medicine, 12(6), 339–345.

Briggs-Gowan, M. J., Carter, A. S., Irwin, J. R., Wachtel, K., & Cicchetti, D. V. (2002). Brief infant-toddler social and emotional assessment (BITSEA) manual, version 2.0

Calzada, E. J., Huang, K.-Y., Anicama, C., Fernandez, Y., & Brotman, L. M. (2012). Test of a cultural framework of parenting with Latino families of young children. Cultural Diversity & Ethnic Minority Psychology, 18(3), 285–296. https://doi.org/10.1037/a0028694.

Conrad, P., & Barker, K. K. (2010). The social construction of illness: key insights and policy implications. Journal of Health and Social Behavior, 51(Suppl), 67–79. https://doi.org/10.1177/0022146510383495.

Curran, G. M., Bauer, M., Mittman, B., Pyne, J. M., & Stetler, C. (2012). Effectiveness-implementation hybrid designs: combining elements of clinical effectiveness and implementation research to enhance public health impact. Medical Care, 50(3), 217–226. https://doi.org/10.1097/MLR.0b013e3182408812.

Department of Developmental Disabilities, Ohio Center for Austism and Low Incidence (2015). Austism diagnosis education project: a year in review

Eisenhower, A., Pedraza, F. M., Sheldrick, R. C., Frenette, E., Hoch, N., Brunt, S., et al. (2020). Multi-stage screening in early intervention: a critical strategy for improving ASD identification and addressing disparities. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-020-04429-z.

Elwyn, G., Frosch, D., Thomson, R., Joseph-Williams, N., Lloyd, A., Kinnersly, P., et al. (2012). Shared decision making: a model for clinical practice. Journal of General Internal Medicine, 27(10), 1361–1367. https://doi.org/10.1007/s11606-012-2077-6.

Elwyn, G., Laitner, S., Coulter, A., Walker, E., Watson, P., & Thomson, R. (2010). Implementing shared decision making in the NHS. BMJ, 341, c5146. https://doi.org/10.1136/bmj.c5146.

Geertz, C. (1973). Thick description: toward an interpretive theory of culture. In The interpretation of cultures: selected essays (pag. 3–32). New York: Basic Books.

Griffith, J. L., Griffith, M. E., & Slovik, L. S. (1990). Mind-body problems in family therapy: contrasting first- and second-order cybernetics approaches. Family Process, 29(1), 13–28. https://doi.org/10.1111/j.1545-5300.1990.00013.x.

Guinchat, V., Chamak, B., Bonniau, B., Bodeau, N., Perisse, D., Cohen, D., et al. (2012). Very early signs of autism reported by parents include many concerns not specific to autism criteria. Research in Autism Spectrum Disorders, 6(2), 589–601.

Harry, B., Sturges, K. M., & Klingner, J. K. (2005). Mapping the process: an exemplar of process and challenge in grounded theory analysis. Educational Researcher, 34(2), 3–13.

Kiss, I. G., Feldman, M. S., Sheldrick, R. C., & Carter, A. S. (2017). Developing Autism screening criteria for the brief infant toddler social emotional assessment (BITSEA). Journal of Autism and Developmental Disorders, 47(5), 1269–1277.

Kleinman, J. M., Ventola, P. E., Pandey, J., Verbalis, A. D., Barton, M., Hodgson, S., et al. (2008). Diagnostic stability in very young children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(4), 606–615. https://doi.org/10.1007/s10803-007-0427-8.

Kozlowski, A. M., Matson, J. L., Horovitz, M., Worley, J. A., & Neal, D. (2011). Parents’ first concerns of their child’s development in toddlers with autism spectrum disorders. Developmental Neurorehabilitation, 14(2), 72–78. https://doi.org/10.3109/17518423.2010.539193.

Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Leventhal, B. L., DiLavore, P. C., et al. (2000). The autism diagnostic observation schedule—generic: a standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30(3), 205–223.

Lord, C., Risi, S., DiLavore, P. S., Shulman, C., Thurm, A., & Pickles, A. (2006). Autism from 2 to 9 years of age. Archives of General Psychiatry, 63(6), 694–701. https://doi.org/10.1001/archpsyc.63.6.694.

Mackie, T. I., Ramella, L., Schaefer, A. J., Sridhar, M., Carter, A. S., Eisenhower, A., et al. (2020). Multi-method process maps: an interdisciplinary approach to investigate ad-hoc modifications in protocol-driven interventions. Journal of Clinical and Translational Science. https://doi.org/10.1017/cts.2020.14.

Marvin, R. S., & Pianta, R. C. (1996). Mothers’ reactions to their child’s diagnosis: relations with security of attachment. Journal of Clinical Child Psychology, 25(4), 436–445. https://doi.org/10.1207/s15374424jccp2504_8.

Midence, K., & O’Neill, M. (1999). The experience of parents in the diagnosis of autism: a pilot study. Autism, 3(3), 273–285.

Milshtein, S., Yirmiya, N., Oppenheim, D., Koren-Karie, N., & Levi, S. (2010). Resolution of the diagnosis among parents of children with autism spectrum disorder: associations with child and parent characteristics. Journal of Autism and Developmental Disorders, 40(1), 89–99. https://doi.org/10.1007/s10803-009-0837-x.

Moses, T. (2010). Exploring parents’ self-blame in relation to adolescents’ mental disorders. Family Relations, 59(2), 103–120. https://doi.org/10.1111/j.1741-3729.2010.00589.x.

Mullen, E. M. (1995). Mullen scales of early learning. Circle Pines MN: AGS.

National Academies of Sciences, Engineering, and Medicine, Insitute of Medicine, Board on Health Care Services, Committee on Diagnostic Error in Health Care, Balogh, E. P., Miller, B. T., & Ball, J. R. (2015). Improving diagnosis in health care. Washington, DC: The National Academies Press.

Ness, L. R. (2015). Are we there yet? Data saturation in qualitative research. The Qualitative Report, 20(9), 1408–1416.

Reed, P., Giles, A., White, S., & Osborne, L. A. (2019). Actual and perceived speedy diagnoses are associated with mothers’ unresolved reactions to a diagnosis of autism spectrum disorder for a child. Autism, 23(7), 1843–1852.

Russell, G., & Norwich, B. (2012). Dilemmas, diagnosis and destigmatization: parental perspectives on the diagnosis of autism spectrum disorders. Clinical Child Psychology and Psychiatry, 17(2), 229–245.

Ryan, S., & Salisbury, H. (2012). ‘You know what boys are like’: prediagnosis experiences of parents of children with autism spectrum conditions. British Journal of General Practice, 62(598), e378–e383.

Salisbury, L. A., Nyce, J. D., Hannum, C. D., Sheldrick, R. C., & Perrin, E. C. (2018). Sensitivity and specificity of 2 autism screeners among referred children between 16 and 48 months of age. Journal of Developmental & Behavioral Pediatrics, 39(3), 254–258.

Schwandt, T. A. (1994). Constructivist, interpretivist approaches to human inquiry. In Handbook of qualitative research (band 1, pag. 118–137).

Sheldrick, R. C., Frenette, E., Vera, J. D., Mackie, T. I., Martinez-Pedraza, F., Hoch, N., et al. (2019). What drives detection and diagnosis of autism spectrum disorder? Looking under the hood of a multi-stage screening process in early intervention. Journal of Autism and Developmental Disorders, 49(6), 2304–2319. https://doi.org/10.1007/s10803-019-03913-5.

Sher-Censor, E., Ram-On, D. T., Rudstein-Sabbag, L., Watemberg, M., & Oppenheim, D. (2019). The reaction to diagnosis questionnaire: a preliminary validation of a new self-report measure to assess parents’ resolution of their child’s diagnosis. Attachment & Human Development. https://doi.org/10.1080/14616734.2019.1628081.

Singer, J. D., & Willett, J. B. (2003). Applied longitudinal data analysis: modeling change and event occurrence. Oxford: Oxford University Press.

Siu, A. L., Bibbins-Domingo, K., Grossman, D. C., Baumann, L. C., Davidson, K. W., Ebell, M., et al. (2016). Screening for autism spectrum disorder in young children: US Preventive Services Task Force recommendation statement. JAMA, 315(7), 691–696.

Smith, N. J., Sheldrick, R. C., & Perrin, E. C. (2013). An abbreviated screening instrument for autism spectrum disorders. Infant Mental Health Journal, 34(2), 149–155.

Sparrow, S., Cicchetti, D. V., & Saulnier, C. A. (2016). Vineland adaptive behavior scales, (Vineland-3). Antonio: Psychological Corporation.

Stone, W. L., Coonrod, E. E., & Ousley, O. Y. (2000). Brief report: screening tool for autism in two-year-olds (STAT): development and preliminary data. Journal of Autism and Developmental Disorders, 30(6), 607–612.

Stone, W. L., McMahon, C. R., & Henderson, L. M. (2008). Use of the screening tool for autism in two-year-olds (STAT) for children under 24 months: an exploratory study. Autism, 12(5), 557–573.

Willms, D. G., Best, J. A., Taylor, D. W., Gilbert, J. R., Wilson, D. M. C., Lindsay, E. A., et al. (1990). A systematic approach for using qualitative methods in primary prevention research. Medical Anthropology Quarterly, 4(4), 391–409.

Yirmiya, N., Seidman, I., Koren-Karie, N., Oppenheim, D., & Dolev, S. (2015). Stability and change in resolution of diagnosis among parents of children with autism spectrum disorder: child and parental contributions. Development and psychopathology, 27, 1045.

Zuckerman, K. E., Sinche, B., Cobian, M., Cervantes, M., Mejia, A., Becker, T., et al. (2014a). Conceptualization of autism in the Latino community and its relationship with early diagnosis. Journal of Developmental and Behavioral Pediatrics, 35(8), 522.

Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C. (2014b). Latino parents’ perspectives on barriers to autism diagnosis. Academic Pediatrics, 14(3), 301–308. https://doi.org/10.1016/j.acap.2013.12.004.