Improving the Journey Before, During and After Diagnosis of a Neurodevelopmental Condition: Suggestions from a Sample of Australian Consumers and Professionals

Alonso Soriano, C., Hill, E. L., & Crane, L. (2015). Surveying parental experiences of receiving a diagnosis of developmental coordination disorder (DCD). Research in Developmental Disabilities, 43–44, 11–20. https://doi.org/10.1016/j.ridd.2015.06.001

PubMed  Google Scholar 

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM‐5®). Arlington, VA: Author.

Australian Government. (2018). National Disability Insurance Scheme Act 2013. Compilation No. 9. Retrieved from https://www.legislation.gov.au/Details/C2018C00276

Bell, E., Andrew, G., Di Pietro, N., Chudley, A. E., Reynolds, J. N., & Racine, E. (2016). It’s a shame! Stigma against fetal alcohol spectrum disorder: Examining the ethical implications for public health practices and policies. Public Health Ethics, 9(1), 65–77. https://doi.org/10.1093/phe/phv012

Google Scholar 

Blank, R., Barnett, A. L., Cairney, J., Green, D., Kirby, A., Polatajko, H., Rosenblum, S., Smit-Engelsman, B., Sugden, D., Wilson, P., & Vinçon, S. (2019). International clinical practice recommendations on the definition, diagnosis, assessment, intervention, and psychosocial aspects of developmental coordination disorder. Developmental Medicine and Child Neurology, 61(3), 242–285. https://doi.org/10.1111/dmcn.14132

PubMed  PubMed Central  Google Scholar 

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 & Social Care in the Community, 27(4), e143–e157. https://doi.org/10.1111/hsc.12691

Google Scholar 

Bower, C., & Elliott, E. (2020). Australian guide to the diagnosis of fetal alcohol spectrum disorder (FASD). Australian Government Department of Health.

Google Scholar 

Brooks, J., McCluskey, S., Turley, E., & King, N. (2014). The utility of template analysis in qualitative psychology research. Qualitative Research in Psychology, 12(2), 202–222. https://doi.org/10.1080/14780887.2014.955224

PubMed  PubMed Central  Google Scholar 

Corcoran, J., Schildt, B., Hochbrueckner, R., & Abell, J. (2017). Parents of children with attention deficit/hyperactivity disorder: A meta-synthesis, part II. Child & Adolescent Social Work Journal, 34(4), 337–348. https://doi.org/10.1007/s10560-017-0497-1

Google Scholar 

Dadds, M. R., & Frick, P. J. (2019). Toward a transdiagnostic model of common and unique processes leading to the major disorders of childhood: The REAL model of attention, responsiveness and learning. Behaviour Research and Therapy, 119, 103410. https://doi.org/10.1016/j.brat.2019.103410

PubMed  Google Scholar 

Domeij, H., Fahlström, G., Bertilsson, G., Hultcrantz, M., Munthe-Kaas, H., Gordh, C. N., & Helgesson, G. (2018). Experiences of living with fetal alcohol spectrum disorders: A systematic review and synthesis of qualitative data. Developmental Medicine & Child Neurology, 60(8), 741–752. https://doi.org/10.1111/dmcn.13696

Google Scholar 

Elangkovan, I. T., & Shorey, S. (2020). Experiences and needs of parents caring for children with cerebral palsy: A systematic review. Journal of Developmental and Behavioral Pediatrics, 41(9), 730–739. https://doi.org/10.1097/DBP.0000000000000880

PubMed  Google Scholar 

Finlay-Jones, A., Varcin, K., Leonard, H., Bosco, A., Alvares, G., & Downs, J. (2019). Very early identification and intervention for infants at risk of neurodevelopmental disorders: A transdiagnostic approach. Child Development Perspectives, 13(2), 97–103. https://doi.org/10.1111/cdep.12319

Google Scholar 

Garg, P., Ha, M., Eastwood, J., Harvey, S., Woolfenden, S., Murphy, E., Dissanayake, C., Jalaludin, B., Williams, K., McKenzie, A., Einfeld, S., Silove, N., Short, K., & Eapen, V. (2017). Explaining culturally and linguistically diverse (CALD) parents’ access of healthcare services for developmental surveillance and anticipatory guidance: Qualitative findings from the ‘Watch Me Grow’study. BMC Health Services Research, 17(1), 1–12.

Google Scholar 

Green, S. E., Darling, R. B., & Wilbers, L. (2013). Has the parent experience changed over time? A meta-analysis of qualitative studies of parents of children with disabilities from 1960 to 2012. In S. N. Barnartt & B. M. Altman (Eds.), Disability and intersecting statuses (pp. 97–168). Emerald Group Publishing Limited.

Kennedy, S. M., Bilek, E. L., & Ehrenreich-May, J. (2019). A randomized controlled pilot trial of the unified protocol for transdiagnostic treatment of emotional disorders in children. Behavior Modification, 43(3), 330–360.

PubMed  Google Scholar 

Krefting, L. (1991). Rigor in qualitative research: The assessment of trustworthiness. The American Journal of Occupational Therapy, 45(3), 214–222.

PubMed  Google Scholar 

Licari, M., Finlay-Jones, A., Reynolds, J. E., Alvares, G. A., Spittle, A. J., Downs, J., Whitehouse, A., Leonard, H., Evans, K., & Varcin, K. (2019). The brain basis of comorbidity in neurodevelopmental disorders. Current Developmental Disorders Reports, 6(1), 9–18. https://doi.org/10.1007/s40474-019-0156-7

Google Scholar 

Licari, M., Williams, J., Impact for DCD Team. (2020). National survey evaluating the impact of developmental coordination disorder in Australia: Summary of results. Telethon Kids Institute.

Google Scholar 

Morris-Rosendahl, D. J., & Crocq, M. (2020). Neurodevelopmental disorders: The history and future of a diagnostic concept. Dialogues in Clinical Neuroscience, 22(1), 65–72. https://doi.org/10.31887/DCNS.2020.22.1/macrocq

PubMed  PubMed Central  Google Scholar 

National Health and Medical Research Council. (2012). Clinical practice points on the diagnosis, assessment and management of attention deficit hyperactivity disorder in children and adolescents. Commonwealth of Australia.

Novak, I., Morgan, C., Adde, L., Blackman, J., Boyd, R. N., Brunstrom-Hernandez, J., Cioni, G., Damiano, D., Darrah, J., Eliasson, A., de Vries, L., Einspieler, C., Fahey, M., Fehlings, D., Ferriero, D., Fetters, L., Fiori, S., Forssberg, H., Gordon, A., . . . Badawi, N. (2017). Early, accurate diagnosis and early intervention in cerebral palsy: Advances in diagnosis and treatment. JAMA Pediatrics, 171(9), 897-907. https://doi.org/10.1001/jamapediatrics.2017.1689

Overs, B., Woolfenden, S., Williams, K., Jalaludin, B., Axelsson, E., Dissanayake, C., Descallar, J., Harvey, S., Beasley, D., Murphy, E., Eapen, V., and the ‘Watch Me Grow’ Study Group. (2017). Predictors of developmental surveillance completion at six months of age in south western Sydney. Child: Care, Health and Development, 43(2), 307–315.

Google Scholar 

Portney, L. G., & Watkins, M. P. (2015). Foundations of clinical research: Applications to practice (3rd ed.). F.A. Davis.

Google Scholar 

Roper, C., Grey, F., & Cadogan, E. (2018). Co-production: Putting principles into practice in mental health contexts. University of Melbourne.

Google Scholar 

Whitehouse, A., Evans, K., Eapen, V., & Wray, J. (2018). A national guideline for the assessment and diagnosis of autism spectrum disorders in Australia. Cooperative Research Centre for Living with Autism.

Google Scholar 

World Health Organization. (2018). International classification of diseases for mortality and morbidity statistics (ICD-11). World Health Organization.

留言 (0)

沒有登入
gif