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Research Articles

“It is more than the average parent goes through”: using the experiences of Australian parents of dyslexic children to draw a distinction between advocacy and allyship

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Pages 53-74 | Received 13 Jul 2023, Accepted 09 Apr 2024, Published online: 17 Apr 2024

References

  • Abetz, J. (2022). “I have fought this system from the moment he stepped into school”: Exploring sources of uncertainty for mothers of children with dyslexia. American Journal of Qualitative Research, 6(3), 212–228. doi:10.29333/ajqr/12619
  • Adams, K. S., & Christenson, S. L. (2000). Trust and the family–school relationship examination of parent–teacher differences in elementary and secondary grades. Journal of School Psychology, 38(5), 477–497. doi:10.1016/S0022-4405(00)00048-0
  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). doi:10.1176/appi.books.9780890425787
  • Anthony, H., Reupert, A., & McLean, L. (2024). Parent experiences of specific learning disorder diagnosis: A scoping review. Dyslexia, 30(1). https://doi.org/10.1002/dys.1757
  • Australian Government Department of Education. 2021. Family-School Partnerships Framework. https://www.education.gov.au/download/4280/family-school-partnerships-framework-strategies/6384/document/pdf
  • Australian Government Department of Education Skills and Employment. (2020). Disability standards for education 2005 plus guidance notes. Australian Government. https://www.dese.gov.au/download/851/disability-standards-education-2005-plus-guidance-notes/16957/document/pdf
  • Bonifacci, P., Massi, L., Pignataro, V., Zocco, S., & Chiodo, S. (2019). Parenting stress and broader phenotype in parents of children with attention deficit hyperactivity disorder, dyslexia or typical development. International Journal of Environmental Research and Public Health, 16(11), 1878. doi:10.3390/ijerph16111878
  • Bonifacci, P., Storti, M., Tobia, V., & Suardi, A. (2016). Specific learning disorders: A look inside children’s and parents’ psychological well-being and relationships. Journal of Learning Disabilities, 49(5), 532–545. doi:10.1177/0022219414566681
  • Bourke, B. (2020). Leaving behind the rhetoric of allyship. Whiteness and Education, 5(2), 179–194. doi:10.1080/23793406.2020.1839786
  • Branson, D. C. (2019). Vicarious trauma, themes in research, and terminology: A review of literature. Traumatology, 25(1), 2. doi:10.1037/trm0000161
  • Brown, A. (2019). Respectful research with and about young families: Forging frontiers and methodological considerations. Springer International Publishing AG. http://ebookcentral.proquest.com/lib/usq/detail.action?docID=5660302
  • Burke, M. M., Meadan-Kaplansky, H., Patton, K. A., Pearson, J. N., Cummings, K. P., & Chung Eun, L. (2018). Advocacy for children with social-communication needs: Perspectives from parents and school professionals. The Journal of Special Education, 51(4), 191–200. doi:10.1177/0022466917716898
  • Burke, M., Tovar, J., & Rios, K. (2022). Exploring the advocacy process and its products among parents of children with disabilities. Exceptionality, 30(3), 187–200. doi:10.1080/09362835.2021.1968403
  • Carotenuto, M., Messina, A., Monda, V., Precenzano, F., Iacono, D. & Parisi, L. (2017). Maternal stress and coping strategies in developmental dyslexia: An Italian multicenter study. Frontiers in Psychiatry, 8, 295. doi:10.3389/fpsyt.2017.00295
  • Coyne, I., & Carter, B. (2018). Being participatory: Researching with children and young people: Co-constructing knowledge using creative techniques. Switzerland: Springer.
  • Delany, K. (2017). The experience of parenting a child with dyslexia: An Australian perspective. Journal of Student Engagement: Education Matters, 7(1), 97–123.
  • DeTurk, S. (2011). Allies in action: The communicative experiences of people who challenge social injustice on behalf of others. Communication Quarterly, 59(5), 569–590. doi:10.1080/01463373.2011.614209
  • Dunn, D. S., & Andrews, E. E. (2015). Person-first and identity-first language: Developing psychologists’ cultural competence using disability language. The American Psychologist, 70(3), 255. doi:10.1037/a0038636
  • Earey, A. (2013). Parental experiences of support for pupils with dyslexia: Ignoring the effect on parents. Support for Learning, 28(1), 35–40. doi:10.1111/1467-9604.12013
  • Erlingsson, C., & Brysiewicz, P. (2017). A hands-on guide to doing content analysis. African Journal of Emergency Medicine, 7(3), 93–99. doi:10.1016/j.afjem.2017.08.001
  • Ferrigon, P., & Tucker, K. (2019). Person-first language vs. identity-first language: An examination of the gains and drawbacks of disability language in society. Journal of teaching disability studies. https://jtds.commons.gc.cuny.edu/person-first-language-vs-identity-first-language-an-examination-of-the-gains-and-drawbacks-of-disability-language-in-society/
  • Fingerhut, A. W. (2011). Straight allies: What predicts heterosexuals’ alliance with the LGBT community? Journal of Applied Social Psychology, 41(9), 2230–2248. doi:10.1111/j.1559-1816.2011.00807.x
  • Forber-Pratt, A. J., Lyew, D. A., Mueller, C., & Samples, L. B. (2017). Disability identity development: A systematic review of the literature. Rehabilitation Psychology, 62(2), 198. doi:10.1037/rep0000134
  • Freire, P. (2008). Pedagogy of the oppressed: 30th anniversary edition. New York: Continuum.
  • Gee, J. P. (2000). Identity as an analytic lens for research in education. Review of Research in Education, 25(1), 99–125. doi:10.3102/0091732X025001099
  • Glumbić, N., Đorđević, M., & Brojčin, B. (2022). Self-advocacy. In N. Glumbić, M. Đorđević, & B. Brojčin (Eds.), Digital inclusion of individuals with autism spectrum disorder (pp. 215–229). Springer International Publishing. doi:10.1007/978-3-031-12037-4_11
  • Goodley, D., Lawthom, R., Liddiard, K., & Runswick-Cole, K. (2019). Provocations for critical disability studies. Disability & Society, 34(6), 972–997. doi:10.1080/09687599.2019.1566889
  • Gray, A. M., & Gayles, J. G. (2018). Doing the right something: A grounded theory approach to understanding advocacy and allyship among college students. Journal of College Student Development, 63(2), 151–167. doi:10.1353/csd.2022.0012
  • Griffiths, C. B., Norwich, B., & Burden, B. (2004). Parental agency, identity and knowledge: Mothers of children with dyslexia. Oxford Review of Education, 30(3), 417–433. doi:10.1080/0305498042000260511
  • Harry, B., & Ocasio-Stoutenburg, L. (2021). Parent advocacy for lives that matter. Research & Practice for Persons with Severe Disabilities, 46(3), 184–198. doi:10.1177/15407969211036442
  • Hornby, G., & Lafaele, R. (2011). Barriers to parental involvement in education: An explanatory model. Educational Review, 63(1), 37–52. doi:10.1080/00131911.2010.488049
  • Huscroft-D’Angelo, J., Farley, J., Hurley, K. D., Lambert, M., & Trout, A. (2022). Engaging parents in special education: An examination of knowledge and access to resources. Exceptionality, 30(3), 201–214. doi:10.1080/09362835.2021.2006060
  • Koca, D. B., Sart, Z. H., Sakız, H., & Albayrak-Kaymak, D. (2023, 02). Self-advocacy experiences of students with specific learning disabilities. Social Psychology of Education, 26(3), 709–733. doi:10.1007/s11218-023-09771-5
  • Leitão, S., Dzidic, P., Claessen, M., Gordon, J., Howard, K., Nayton, M., & Boyes, M. E. (2017). Exploring the impact of living with dyslexia: The perspectives of children and their parents. International Journal of Speech-Language Pathology, 19(3), 322–334. doi:10.1080/17549507.2017.1309068
  • Leslie, R. (2024). The experiences of Australian dyslexic children and their parents: An exploration of allyship and parent-school partnerships. ( Doctorate by publication doctor of philosophy. University of Southern Queensland). 10.26192/z577z
  • Leslie, R., Brown, A., Larsen, E., & Fanshawe, M. (2023). Reflecting on methodology: Strategies for online interviews about sensitive or distressing topics with vulnerable children. International Journal of Research & Method in Education, 1–14. doi:10.1080/1743727X.2023.2294781
  • Levi, K. S. (2017). The experiences of parents of children who have dyslexia in Victoria, Australia: A social justice perspective ( Doctoral thesis), The University of Melbourne, Department of Social Work. https://minerva-access.unimelb.edu.au/handle/11343/212091
  • Mayring, P. (2014). Qualitative content analysis: Theoretical foundation, basic procedures and software solution. https://www.ssoar.info/ssoar/bitstream/handle/document/39517/ssoar-2014-mayring-Qualitative_content_analysis_theoretical_foundation.pdf
  • McCann, I. L., & Pearlman, L. A. (1990). Vicarious traumatization: A framework for understanding the psychological effects of working with victims. Journal of Traumatic Stress, 3(1), 131–149. doi:10.1007/BF00975140
  • Nevill, T., & Forsey, M. (2022a). The social impact of schooling on students with dyslexia: A systematic review of the qualitative research on the primary and secondary education of dyslexic students. Educational Research Review, 38, 100507. doi:10.1016/j.edurev.2022.100507
  • Nevill, T., & Forsey, M. (2022b). ”We are all thrown into one basket”: Dyslexia, schools and the (non)enactment of policies of inclusion. Disability Studies Quarterly, 42(1). doi:10.18061/dsq.v42i1.7649
  • Nevill, T., Savage, G. C., & Forsey, M. (2022). It’s a diagnosis for the rich: Disability, advocacy and the micro-practices of social reproduction. British Journal of Sociology of Education, 1–20. doi:10.1080/01425692.2022.2145931
  • Newell, J. M., & MacNeil, G. A. (2010). Professional burnout, vicarious trauma, secondary traumatic stress, and compassion fatigue. Best Practices in Mental Health, 6(2), 57–68.
  • Olkin, R. (2001). What psychotherapists should know about disability. New York: Guilford Press.
  • Parke, R. D. (2013). Future families: Diverse forms, rich possibilities. Oxford: John Wiley & Sons, Incorporated. http://ebookcentral.proquest.com/lib/usq/detail.action?docID=1367690
  • Pennycook, A. (2001). Critical applied linguistics: A critical introduction. New York: Routledge.
  • Pepper, P. (2016, November 23). We’ve had all the insults. Now we’re reclaiming the language of disability. The Guardian. https://www.theguardian.com/commentisfree/2016/nov/22/language-of-disability-stereotypes-disabled-people
  • Petri, G., Beadle‐Brown, J., & Bradshaw, J. (2020). Redefining self‐advocacy: A practice theory‐based approach. Journal of Policy and Practice in Intellectual Disabilities, 17(3), 207–218. doi:10.1111/jppi.12343
  • Pratto, F., Sidanius, J., & Levin, S. (2006). Social dominance theory and the dynamics of intergroup relations: Taking stock and looking forward. European Review of Social Psychology, 17(1), 271–320. doi:10.1080/10463280601055772
  • Rabaey, P., Hepperlen, R., Manley, H., & Ament-Lemke, A. (2021). Empowering Caregivers of children with disabilities in Zambia: A photovoice study. The American Journal of Occupational Therapy, 75(4). doi:10.5014/ajot.2021.045526
  • Radke, H. R., Kutlaca, M., Siem, B., Wright, S. C., & Becker, J. C. (2020). Beyond allyship: Motivations for advantaged group members to engage in action for disadvantaged groups. Personality and Social Psychology Review, 24(4), 291–315. doi:10.1177/1088868320918698
  • Razzante, R. J., & Orbe, M. P. (2018). Two sides of the same coin: Conceptualizing dominant group theory in the context of co-cultural theory. Communication Theory, 28(3), 354–375. doi:10.1093/ct/qtx008
  • Riddick, B. (2001). Dyslexia and inclusion: Time for a social model of disability perspective? International Studies in Sociology of Education, 11(3), 223–236. doi:10.1080/09620210100200078
  • Rossetti, Z., Burke, M. M., Rios, K., Tovar, J. A., Schraml-Block, K. & Lee, J. D. (2021). From individual to systemic advocacy: Parents as change agents. Exceptionality, 29(3), 232–247. doi:10.1080/09362835.2020.1850456
  • Saltmarsh, S., & McPherson, A. (2022). Un/satisfactory encounters: Communication, conflict and parent-school engagement. Critical Studies in Education, 63(2), 147–162. doi:10.1080/17508487.2019.1630459
  • Schraml-Block, K., & Ostrosky, M. M. (2022). The meaning and nature of parental advocacy in the early years. Exceptionality, 30(3), 157–172. doi:10.1080/09362835.2021.1938054
  • Schreier, M. (2019). Content analysis, qualitative. In P. Atkinson, S. Delamont, A. Cernat, J. W. Sakshaug, & R. A. Williams (Eds.), SAGE Research Methods Foundations. doi:10.4135/9781526421036753373
  • Shakespeare, T. (2006). The social model of disability. In L. J. Davis (Ed.), The Disability Studies Reader (Vol. 2, pp. 197–204). New York: Routledge.
  • Shaywitz, S. E., Shaywitz, J. E., & Shaywitz, B. A. (2021). Dyslexia in the 21st century. Current Opinion in Psychiatry, 34(2), 80–86. doi:10.1097/YCO.0000000000000670
  • Sumerau, J., Forbes, T. D., Grollman, E. A., & Mathers, L. A. (2021). Constructing allyship and the persistence of inequality. Social Problems, 68(2), 358–373. doi:10.1093/socpro/spaa003
  • Tarvainen, M. (2019). Ableism and the life stories of people with disabilities. Scandinavian Journal of Disability Research, 21(1), 291–299. doi:10.16993/sjdr.632
  • Test, D. W., Fowler, C. H., Wood, W. M., Brewer, D. M., & Eddy, S. (2005). A conceptual framework of self-advocacy for students with disabilities. Remedial and Special Education, 26(1), 43–54. doi:10.1177/07419325050260010601
  • Trainor, A. A. (2010). Diverse approaches to parent advocacy during special education home—school interactions: Identification and use of cultural and social capital. Remedial and Special Education, 31(1), 34–47. doi:10.1177/0741932508324401
  • Vaismoradi, M., Turunen, H., & Bondas, T. (2013). Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nursing & Health Sciences, 15(3), 398–405. doi:10.1111/nhs.12048
  • Vincent, C. (2017). ‘The children have only got one education and you have to make sure it’s a good one’: parenting and parent–school relations in a neoliberal age. Gender and Education, 29(5), 541–557. https://doi.org/10.1080/09540253.2016.1274387
  • Vosloo, J. L. (2020). Between buzzwords and bodies: Investigating the ambiguities of Allyship with Judith Butler’s relational thinking Master of Arts (Philosophy). Stellenbosch University.
  • Wilmot, A., Pizzey, H., Leitão, S., Hasking, P., & Boyes, M. (2023). “I struggle at times to see her struggle”: Mothers’ perspectives on dyslexia-related school struggles and the inter-connected nature of mother and child well-being. Dyslexia, 29(2), 136–150. doi:10.1002/dys.1733
  • Wofford, N., Defever, A. M., & Chopik, W. J. (2019). The vicarious effects of discrimination: How partner experiences of discrimination affect individual health. Social Psychological & Personality Science, 10(1), 121–130. doi:10.1177/1948550617746218
  • Wolfensberger, W. P. (1977). A multi-component advocacy/protection schema. Wolfensberger Collection. https://digitalcommons.unmc.edu/wolf_books/6
  • Woodcock, C. (2020). Mothers of children with dyslexia share the protection, “In-betweenness,” and the battle of living with a reading disability: A feminist autoethnography. The Qualitative Report, 25(6), 1637A–1657. doi:10.46743/2160-3715/2020.4162
  • Yang, L., Li, C., Li, X., Zhai, M., An, Q. … Weng, X. (2022). Prevalence of developmental dyslexia in primary school children: A systematic review and meta-analysis. Brain Sciences, 12(2), 240. doi:10.3390/brainsci12020240
  • Yip, T., Chung, K., & Chae, D. H. (2022). Vicarious racism, ethnic/racial identity, and sleep among Asian Americans. Cultural Diversity & Ethnic Minority Psychology. doi:10.1037/cdp0000534
  • Zapata, M. (2019). Personal disability identity measurement: Self-worth and personal meaning ( Doctoral thesis). University of California, Berkeley.