1,633
Views
6
CrossRef citations to date
0
Altmetric
Articles

Old challenges, changing contexts: Reviewing and reflecting on information provision for parents of children who are deaf or hard-of-hearing

ORCID Icon
Pages 3-24 | Received 03 Apr 2018, Accepted 20 Jul 2018, Published online: 03 Aug 2018

References

  • Adams, T. E., Holman Jones, S., & Ellis, C. (2015). Autoethnography: Understanding qualitative research. New York: Oxford University Press.
  • American Speech-Language-HearingAssociation. (2007). Year 2007 position statement: Principles and guidelines for early hearing detection and intervention programs. Retrieved from https://www.infanthearing.org/resources/2007_JCIH.pdf
  • Atkinson, P. (2009). Illness narratives revisited: The failure of narrative reductionism. Sociological Research Online, 14(5), 1–10.
  • Australian Health Practitioner Regulation Agency. (2014). Guidelines for advertising regulated health services. Retrieved from https://www.ahpra.gov.au/Publications/Advertising-resources/Legislation-guidelines/Advertising-guidelines.aspx
  • Australian Hearing. (2005). Choices. Retrieved from https://trove.nla.gov.au/work/20547025?q&versionId=46505258
  • Australian Hearing. (2018). Australian Hearing website. Retrieved from https://www.hearing.com.au/About-hearing/Hearing-in-babies-children/Resources/Which-sites-have-trustworthy-information-about-hearing
  • Bath, P. (2012). Perspectives from the deaf community: Representations of deaf identity in the Toronto Star Newspaper (2005–2010). Ottawa: Université d’Ottawa/University of Ottawa. doi: 10.20381/ruor-6035
  • Bauman, H.-D. L., & Murray, J. J. (2014). Deaf gain: Raising the stakes for human diversity. Minneapolis: University of Minnesota Press.
  • Baxter, K., Glendinning, C., & Clarke, S. (2008). Making informed choices in social care: The importance of accessible information. Health & Social Care in the Community, 16(2), 197–207. doi: 10.1111/j.1365-2524.2007.00742.x
  • Beattie, R. G. (2010). The ethics of newborn hearing screening. In C. Driscoll & B. McPherson (Eds.), Newborn screening systems: The complete perspective (pp. 31–48). San Diego, CA: Plural Pub.
  • Bernstam, E. V., Sagaram, S., Walji, M., Johnson, C. W., & Meric-Bernstam, F. (2005). Usability of quality measures for online health information: Can commonly used technical quality criteria be reliably assessed? International Journal of Medical Informatics, 74(7–8), 675–683. doi: 10.1016/j.ijmedinf.2005.02.002
  • Bernstam, E. V., Walji, M. F., Sagaram, S., Sagaram, D., Johnson, C. W., & Meric-Bernstam, F. (2008). Commonly cited website quality criteria are not effective at identifying inaccurate online information about breast cancer. Cancer, 112(6), 1206–1213. doi: 10.1002/cncr.23308
  • Braun, V. (2009). ‘The women are doing it for themselves’. The rhetoric of choice and agency around female genital cosmetic surgery. Australian Feminist Studies, 24(60), 233–249. doi: 10.1080/08164640902852449
  • Brookes, G., & Harvey, K. (2015). Peddling a semiotics of fear: A critical examination of scare tactics and commercial strategies in public health promotion. Social Semiotics, 25(1), 57–80. doi: 10.1080/10350330.2014.988920
  • Brown, H., Ramchandani, M., Gillow, J., & Tsaloumas, M. (2004). Are patient information leaflets contributing to informed consent for cataract surgery? Journal of Medical Ethics, 30(2), 218–220. doi: 10.1136/jme.2003.003723
  • Carreon, J. R., Watson Todd, R., & Knox, J. S. (2013). Medical tourism communication of a Thai private hospital website. Journal of Applied Linguistics and Professional Practice, 8(2), 71. doi: 10.1558/japl.v8i2.165
  • Chang, H. (2016). Autoethnography in health research: Growing pains? Qualitative Health Research, 26(4), 443–51. doi: 10.1177/1049732315627432
  • Charnock, D., & Shepperd, S. (2004). Learning to DISCERN online: Applying an appraisal tool to health websites in a workshop setting. Health Education Research, 19(4), 440–446. doi: 10.1093/her/cyg046
  • Ching, T. Y. C. (2014, June 6). Outcomes of children with hearing loss: Implications for management. Paper presented at HEAL, Como.
  • Ching, T. Y., & Dillon, H. (2013). Major findings of the LOCHI study on children at 3 years of age and implications for audiological management. International Journal of Audiology, 52(Supp 2), S65–S68. doi: 10.3109/14992027.2013.866339
  • Conrad, P. (2005). The shifting engines of medicalization. Journal of Health and Social Behavior, 46(1), 3–14. doi: 10.1177/002214650504600102
  • Cook, P. (2014). ‘To actually be sociological’: Autoethnography as an assessment and learning tool. Journal of Sociology, 50(3), 269–282.
  • Dammeyer, J. (2009). Psychosocial development in a danish population of children with cochlear implants and deaf and hard-of-hearing children. Journal of Deaf Studies and Deaf Education, 15(1), 50–8. doi:10.1093/deafed/enp024
  • Dammeyer, J. (2012). A longitudinal study of pragmatic language development in three children with cochlear implants. Deafness & Education International, 14(4), 217–232. doi: 10.1179/1464315412Z.00000000024
  • Deaf Australia Inc. (2009). Policy on early intervention for deaf andhard of hearing children. Retrieved from http://deafaustralia.org.au/wpcontent/uploads/Educationearlyinterventionpolicy-310420091.pdf
  • Decker, K. B., & Vallotton, C. D. (2016). Early Intervention for children with hearing loss: Information parents receive about supporting children's language. Journal of Early Intervention, 38(3), 151–169.
  • Decker, K. B., Vallotton, C. D., & Johnson, H. A. (2012). Parents’ communication decision for children with hearing loss: Sources of information and influence. American Annals of the Deaf, 157(4), 326–339. doi: 10.1353/aad.2012.1631
  • Early Childhood Intervention Australia. (2015). ECIA national guidelines on best practice in early intervention. Retrieved from https://www.ecia.org.au/Resources/National-Guidelines-for-Best-Practice-in-ECI
  • Fairclough, N. (1992). Discourse and social change (Vol. 10). Cambridge: Polity press.
  • Fairclough, N. (1995). Technologisation of discourse. In C. R. Caldas-Coulthard & M. Coulthard (Eds.), Texts and practices: Readings in critical discourse analysis (pp. 71–83). New York and London: Routledge.
  • Feng, D., & Wignell, P. (2011). Intertextual voices and engagement in TV advertisements. Visual Communication, 10(4), 565–588. doi: 10.1177/1470357211415788
  • Frank, A. W. (2010). Letting stories breathe: A socio-narratology. Chicago, IL: University of Chicago Press.
  • Hall, D. R. (2006). Medical leaflets, empowerment and disempowerment. In Advances in medical discourse analysis: Oral and written contexts (pp. 271–288). Frankfurt am Main-Berlin-Bern-Bruxelles-New York-Oxford-Wien: Peter Lang.
  • Harvey, K. (2013). Medicalisation, pharmaceutical promotion and the internet: A critical multimodal discourse analysis of hair loss websites. Social Semiotics, 23(5), 691–714. doi: 10.1080/10350330.2013.777596
  • Hastings, G., Stead, M., & Webb, J. (2004). Fear appeals in social marketing: Strategic and ethical reasons for concern. Psychology & Marketing, 21(11), 961–986. doi: 10.1002/mar.20043
  • Hersch, J., Jansen, J., Irwig, L., Barratt, A., Thornton, H., Howard, K., & McCaffery, K. (2011). How do we achieve informed choice for women considering breast screening? Preventive Medicine, 53(3), 144–146. doi: 10.1016/j.ypmed.2011.06.013
  • Hibbard, J. H., & Peters, E. (2003). Supporting informed consumer health care decisions: Data presentation approaches that facilitate the use of information in choice. Annual Review of Public Health, 24(1), 413–433. doi: 10.1146/annurev.publhealth.24.100901.141005
  • Hintermair, M. (2006). Parental resources, parental stress, and socioemotional development of deaf and hard of hearing children. The Journal of Deaf Studies and Deaf Education, 11(4), 493–513.
  • Humphries, T., Kushalnagar, P., Mathur, G., Napoli, D. J., Padden, C., Rathmann, C., & Smith, S. R. (2012). Language acquisition for deaf children: Reducing the harms of zero tolerance to the use of alternative approaches. Harm Reduction Journal, 9(1), 16. doi: 10.1186/1477-7517-9-16
  • Humphries, T., Kushalnagar, P., Mathur, G., Napoli, D. J., Padden, C., & Rathmann, C. (2014). Ensuring language acquisition for deaf children: What linguists can do? Language, 90(2), e31–e52.
  • Hyde, M., Punch, R., & Komesaroff, L. (2010). Coming to a decision about cochlear implantation: Parents making choices for their deaf children. Journal of Deaf Studies and Deaf Education, 15(2), 162–178. doi: 10.1093/deafed/enq004
  • Ingber, S., & Dromi, E. (2010). Actual versus desired family-centered practice in early intervention for children with hearing loss. Journal of Deaf Studies and Deaf Education, 15(1), 59–71. doi: 10.1093/deafed/enp025
  • Joffe, H. (2008). The power of visual material: Persuasion, emotion and identification. Diogenes, 55(1), 84–93. doi: 10.1177/0392192107087919
  • Joint Committee on Infant Hearing. (2007). Year 2007 position statement: Principles and guidelines for early hearing detection and intervention programs. Pediatrics, 120(4), 898–921.
  • Jørgensen, K., Brodersen, J., Hartling, O., Nielsen, M., & Gøtzsche, P. (2009). Informed choice requires information about both benefits and harms. Journal of Medical Ethics, 35(4), 268–269. doi: 10.1136/jme.2008.027961
  • Kecman, E. (2017). Exploring 'attitude' in information for parents of deaf and hard-of-hearing (D/HH) children in NSW. An Appraisal Analysis of two early intervention websites (Unpublished Master of Research Thesis). Macquarie University, Sydney, Australia.
  • Kim, P., Eng, T. R., Deering, M. J., & Maxfield, A. (1999). Published criteria for evaluating health related web sites: Review. Bmj, 318(7184), 647–649. doi: 10.1136/bmj.318.7184.64
  • Klaudia, K. (2013, December). The benefits of sign language for deaf children with and without cochlear implant(s). European Scientific Journal, 4, 341–349.
  • Knoors, H., & Marschark, M. (2012). Language planning for the 21st century: Revisiting bilingual language policy for deaf children. Journal of Deaf Studies and Deaf Education, 17(3), 291–305. doi: 10.1093/deafed/ens018ens
  • Kobes, K., Harris, I. B., Regehr, G., Tekian, A., & Ingledew, P. A. (2018). Malignant websites? Analyzing the quality of prostate cancer education web resources. Canadian Urological Association Journal, 12(10). doi:10.5489/cuaj.5084
  • Komesaroff, L. (2007). Surgical consent: Bioethics and cochlear implantation. Seattle, WA: University of Washington Press.
  • Lane, H. (1990). Cultural and infirmity models of deaf Americans. Journal of the Academy of Rehabilitative Audiology, 23, 11–26.
  • Lane, H. (1995). Constructions of deafness. Disability & Society, 10(2), 171–190.
  • Leigh, G., & Marschark, M. (2016). Recognizing diversity in deaf education: From Paris to Athens with a diversion to Milan. In Diversity in deaf education, 1–20. New York, NY: Oxford University Press.
  • Lichtenstein, S., & Slovic, P. (Eds.). (2006). The construction of preference. New York: Cambridge University Press.
  • Lim, S. S., Nekmat, E., & Nahar, S. N. (2011). The implications of multimodality for media literacy. In K. O’Halloran & B. A. Smith (Eds.), Multimodal studies – exploring issues and domains (pp. 169–183). London: Routledge.
  • Luckner, J. L., & Cooke, C. (2010). A summary of the vocabulary research with students who are deaf or hard of hearing. American Annals of the Deaf, 155(1), 38–67.
  • Machin, D., & Mayr, A. (2012). How to do critical discourse analysis: A multimodal introduction. London: Sage.
  • Maier, C. D. (2011). Knowledge communication in green corporate marketing: A multimodal discourse analysis of an ecomagination video. In K. O’Halloran & B. Smith (Eds.), Multimodal representation and knowledge (pp. 153–169). New York: Routledge.
  • Matthijs, L., Hardonk, S., Sermijn, J., Van Puyvelde, M., Leigh, G., Van Herreweghe, M., & Loots, G. (2017). Mothers of deaf children in the 21st century. Dynamic positioning between the medical and cultural–linguistic discourses. Journal of Deaf Studies and Deaf Education, 22(4), 365–377. doi: 10.1093/deafed/enx021
  • Matthijs, L., Loots, G., Mouvet, K., Van Herreweghe, M., Hardonk, S., Van Hove, G., … Leigh, G. (2012). First information parents receive after UNHS detection of their baby’s hearing loss. Journal of Deaf Studies and Deaf Education, 17(4), 387–401. doi: 10.1093/deafed/ens020
  • Mauldin, L. (2014). Precarious plasticity: Neuropolitics, cochlear implants, and the redefinition of deafness. Science, Technology, & Human Values, 39(1), 130-153. doi: 10.1177/0162243913512538
  • McDonald, D. M. (2010). (1) Critical essay: Hearsay: how stories of deafness and deaf people are told (2) Creative work: The art of being deaf. doi: 10.14264/uql.2015.956
  • Medical Board of Australia. (2014a). Good medical practice a code of conduct for doctors in Australia. Retrieved from www.medicalboard.gov.au/Codes-Guidelines-Policies/Code-of-conduct.aspx
  • Medical Board of Australia. (2014b). National board policy for registered health practioners Social Media Policy. Retrieved from http://www.medicalboard.gov.au/Codes-Guidelines-Policies/Social-media-policy.aspx
  • Mitchell, W., & Sloper, P. (2002). Information that informs rather than alienates families with disabled children: Developing a model of good practice. Health & Social Care in the Community, 10(2), 74–81.
  • Moeller, M. P., Carr, G., Seaver, L., Stredler-Brown, A., & Holzinger, D. (2013). Best practices in family-centered early intervention for children who are deaf or hard of hearing: An international consensus statement. Journal of Deaf Studies and Deaf Education, 18(4), 429–445. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/24030911, doi: 10.1093/deafed/ent034
  • Moran, C., & Lee, C. (2013). Selling genital cosmetic surgery to healthy women: A multimodal discourse analysis of Australian surgical websites. Critical Discourse Studies, 10(4), 373–391. doi: 10.1080/17405904.2013.813772
  • Moynihan, R., & Henry, D. (2006). The fight against disease mongering: Generating knowledge for action. Plos Medicine, 3(4), e191. doi: 10.1371/journal.pmed.0030191
  • Muse, C., Harrison, J., Yoshinaga-Itano, C., Grimes, A., Brookhouser, P. E., Epstein, S. … Martin, P. (2013). Supplement to the JCIH 2007 position statement: Principles and guidelines for early intervention after confirmation that a child is deaf or hard of hearing. Pediatrics, 131(4), e1324–e1349.
  • Ng, C. J. W. (2014). ‘We offer unparalleled flexibility’: Purveying conceptual values in higher educational corporate branding. Discourse & Communication, 391–410. doi: 10.1177/1750481314537576
  • O’Halloran, K. L. (2008). Systemic functional-multimodal discourse analysis (SF-MDA): Constructing ideational meaning using language and visual imagery. Visual Communication, 7(4), 443–475. doi: 10.1177/1470357208096210
  • Oschner, B., Spohrer, M., & Stock, R. (2015). Human, non-human, and beyond: Cochlear implants in socio-technological environments. NanoEthics, 9(3), 237–250.
  • Pimperton, H., & Kennedy, C. R. (2012). The impact of early identification of permanent childhood hearing impairment on speech and language outcomes. Archives of Disease in Childhood, 97(7), 648–53. doi: 10.1136/archdischild-2011-301501
  • Porter, A., & Edirippulige, S. (2007). Parents of deaf children seeking hearing loss-related information on the internet: The Australian experience. Journal of Deaf Studies and Deaf Education, 12(4), 518–529. 10.1093/deafed/eni042
  • Powell, T. E., Boomgaarden, H. G., De Swert, K., & de Vreese, C. H. (2015). A clearer picture: The contribution of visuals and text to framing effects. Journal of Communication, 65(6), 997–1017.
  • Power, D. (2005). Models of deafness: Cochlear implants in the Australian daily press. Journal of Deaf Studies and Deaf Education, 10(4), 451–459. doi: 10.1093/deafed/eni042
  • Rahm, H. (2006). Getting attention in the media: Interdiscursivity and ideology in advertisements. In I. Lassen, J. Strunck, & T. Vestergaard (Eds.), Mediating ideology in text and image (pp. 193–210). Amsterdam: John Benjamins.
  • Sarant, J., & Garrard, P. (2014). Parenting stress in parents of children with cochlear implants: Relationships among parent stress, child language, and unilateral versus bilateral implants. Journal of Deaf Studies and Deaf Education, 19(1), 85–106. doi: 10.1093/deafed/ent032
  • Sass-Lehrer, M. (2012). Early intervention for children birth to 3: Families, communities, and communication. In L. A. Schmeltz (Ed.), A resource guide for early hearing detection and intervention, 10-1–10-16. Retrieved from https://www.infanthearing.org/ehdi-ebook/2016_ebook/17%20Chapter17EarlyIntervention2016.pdf
  • Sass-Lehrer, M., Porter, A., & Wu, C. L. (2015). Families: Partnerships in practice. In M. Sass-Lehrer (Ed.), Early intervention for deaf and hard-of-hearing infants, toddlers, and their families: Interdisciplinary perspectives (pp. 78–91). New York: Oxford University Press.
  • Schmidt, A., Bhatt, A. & Sunstein, C. R. (2017). Boundedly rational patients? Health and patient mistakes in a behavioral framework. Harvard Public Law Working Paper No. 17-29, SSRN. Retrieved from https://ssrn.com/abstract=2953250, 10.2139/ssrn.2953250
  • Shaffer, V. A., & Zikmund-Fisher, B. J. (2013). All stories are not alike apurpose-, content-, and valence-based taxonomy of patient narratives in decision aids. Medical Decision Making, 33(1), 4–13. doi: 10.1177/0272989X12463266
  • Sherer, M., & Rogers, R. W. (1984). The role of vivid information in fear appeals and attitude change. Journal of Research in Personality, 18(3), 321–334.
  • Simon, H. A. (1959). Theories of decision-making in economics and behavioral science. The American Economic Review, 49(3), 253–283.
  • Simonson, I. (2008). Will I like a ''medium'' pillow? Another look at constructed and inherent preferences. Journal of Consumer Psychology, 18(3), 155–169.
  • Solomon, A. (2012). Far from the tree: Parents, children and the search for identity. New York: Scribner.
  • Sorkin, D. L., & Zwolan, T. A. (2008). Parental perspectives regarding early intervention and its role in cochlear implantation in children. Otology & Neurotology, 29(2), 137–141.
  • Spellun, A., & Kushalnagar, P. (2018). Sign language for deaf infants: A key intervention for a developmental emergency. Clinical Pediatrics. doi: 10.1177/0009922818778041
  • Stevenson, J., Kreppner, J., Pimperton, H., Worsfold, S., & Kennedy, C. (2015). Emotional and behavioural difficulties in children and adolescents with hearing impairment: A systematic review and meta-analysis. European Child & Adolescent Psychiatry, 24(5), 477–496. doi: 10.1007/s00787-015-0697-1
  • Stvilia, B., Mon, L., & Yi, Y. J. (2009). A model for online consumer health information quality. Journal of the American Society for Information Science and Technology, 60(9), 1781–1791. doi: 10.1002/asi.21115
  • Winker, M. A., Flanagin, A., Chi-Lum, B., White, J., Andrews, K., Kennett, R. L., … Musacchio, R. A. (2000). Guidelines for medical and health information sites on the internet: Principles governing AMA web sites. JAMA, 283(12), 1600–1606. doi: 10.1001/jama.283.12.1600
  • Wise, D., & James, M. B. (2012). The HPV school vaccination program: A discourse analysis of information provided to parents about the product and the program. Public Communication Review, 2(1), 4–15. 10.5130/pcr.v2i1.2179
  • Wolfensberger, W., & Tullman, S. (1982). A brief outline of the principle of normalization. Rehabilitation Psychology, 27(3), 131–145.
  • Yoshinaga-Itano, C. (2014). Principles and guidelines for early intervention after confirmation that a child is deaf or hard of hearing. Journal of Deaf Studies and Deaf Education, 19(2), 143–175. doi:10.1093/deafed/ent043
  • Yoshinaga-Itano, C., Sedey, A. L., Wiggin, M., & Chung, W. (2017). Early hearing detection and vocabulary of children with hearing loss. Pediatrics, 140, e20162964.
  • Young, A., Carr, G., Hunt, R., McCracken, W., Skipp, A., & Tattersall, H. (2006). Informed choice and deaf children: Underpinning concepts and enduring challenges. Journal of Deaf Studies and Deaf Education, 11(3), 322–336. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/16717258, doi: 10.1093/deafed/enj041
  • Young, A., Jones, D., Starmer, C., & Sutherland, H. (2005). Issues and dilemmas in the production of standard information for parents of young deaf children—parents’ views. Deafness & Education International, 7(2), 63–76. doi: 10.1093/deafed/enj041
  • Young, A., & Temple, B. (2014). Approaches to social research: The case of deaf studies. Perspectives on Deafness. New York, NY: Oxford University Press.
  • Zaidman-Zait, A., & Jamieson, J. R. (2004). Searching for cochlear implant information on the internet maze: Implications for parents and professionals. Journal of Deaf Studies and Deaf Education, 9(4), 413–426.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.