942
Views
12
CrossRef citations to date
0
Altmetric
Articles

Power is knowledge: empowering parents of children with cerebral visual impairment

ORCID Icon
Pages 596-617 | Received 19 May 2019, Accepted 29 Mar 2020, Published online: 20 Apr 2020

References

  • Andersson, Susann, Eva-Karin Persson, Eva Aring, Barbro Lindquist, Gordon N. Dutton, and Ann Hellstrom. 2006. “Vision in Children with Hydrocephalus.” Developmental Medicine & Child Neurology 48 (10): 836–841. doi:10.1017/S0012162206001794.
  • Ary, Donald, Lucy Cheser Jacobs, Christine Sorensen, and David Walker. 2014. Introduction to Research in Education. 9th ed. Belmont, CA: Wadsworth.
  • Bolstad, R., J. Gilbert, S. McDowall, A. Bull, and, R. Hipkins. 2012. Supporting Future-Orientated Learning and Teaching: A New Zealand Perspective. Wellington, NZ: Ministry of Education.
  • Boshoff, Kobie, Deanna Gibbs, Rebecca L. Phillips, Louise Wiles, and Logan Porter. 2018. “Parents’ Voices: “Our Process of Advocating for Our Child with Autism.” A Meta-Synthesis of Parents’ Perspectives.” Child: Care, Health & Development 44 (1): 147–160. doi:10.1111/cch.12504.
  • Boshoff, Kobie, Deanna Gibbs, Rebecca L. Phillips, Lousie Wiles, and Logan Porter. 2016. “Parents’ Voices: ‘Why and How We Advocate’. A Meta-Synthesis of Parents’ Experiences of Advocating for Their Child with Autism Spectrum Disorder.” Child: Care, Health & Development 42 (6): 784–797. doi:10.1111/cch.12383.
  • Braun, Virginia, and Victoria Clarke. 2006. “Using Thematic Analysis in Psychology.” Qualitative Research in Psychology 3 (2): 77–101. doi:10.1191/1478088706qp063oa.
  • Case, Stephen. 2001. “Learning to Partner, Disabling Conflict: Early indications of an Improving Relationship between Parents and Professionals with Regard to Service Provision for Children with Learning Disabilities.” Disability & Society 16 (6): 837–854. doi:10.1080/09687590120083985.
  • Chong, Chee Fong, and Shuan Dai. 2014. “Cross-Sectional Study on Childhood Cerebral Visual Impairment in New Zealand.” Journal of American Association for Pediatric Ophthalmology and Strabismus 18 (1): 71–74. doi:10.1016/j.jaapos.2013.09.014.
  • Creswell, J. W., V. L. Plano Clark, M. L. Gutmann, and W. E. Hanson. 2003. “Advanced Mixed Methods Research Designs.” In Handbook of Mixed Methods in Social and Behavioral Research edited by A. Tashakkori and C. Teddlie, 209–240. Thousand Oaks, CA: Sage.
  • Dutton, Gordon N, and Corinna M. Bauer. 2019. “Cerbral (Cortical) Visual Impairment in Children: A Perspective.” In Routledge Handbook of Visual Impairment, edited by John Ravenscroft, 53-69. London: Routledge.
  • Ego, Anne, Karen Lidzba, Paola Brovedani, Vittorio Belmonti, Sibylle Gonzalez-Monge, Baya Boudia, Annie Ritz, and Christine Cans. 2015. “Visual-Perceptual Impairment in Children with Cerebral Palsy: A Systematic Review.” Developmental Medicine & Child Neurology 57 (2): 46–51. doi:10.1111/dmcn.12687.
  • Fazzi, Elisa, Stefania Bova, Alessia Giovenzana, Sabrina Signorini, Carla Uggetti, and Paolo Bianchi. 2009. “Cognitive Visual Dysfunctions in Preterm Children with Periventricular Leukomalacia.” Developmental Medicine & Child Neurology 51 (12): 974–981. doi:10.1111/j.1469-8749.2009.03272.x.
  • Good, William V., James E. Jan, Susan K. Burden, Ann Skoczenski, and Rowan Candy. 2001. “Recent Advances in Cortical Visual Impairment.” Developmental Medicine and Child Neurology 43 (01): 56–60. doi:10.1017/S0012162201000093.
  • Gorrie, Fiona, Karen Goodall, Robert Rush, and John Ravenscroft. 2019. “Towards Population Screening for Cerebral Visual Impairment: Validity of the Five Questions and the CVI Questionnaire.” PLoS One 14 (3): e0214290. doi:10.1371/journal.pone.0214290.
  • Hinds, Pamela S., Linda L. Oakes, Judy Hicks, Brent Powell, Deo K. Srivastava, Sheri L. Spunt, Joann Harper, Justin N. Baker, Nancy K. West, and Wayne L. Furman. 2009. “Trying to Be a Good Parent” as Defined by Interviews with Parents Who Made Phase I, Terminal Care, and Resuscitation Decisions for Their Children.” Journal of Clinical Oncology 27 (35): 5979–5985. doi:10.1200/JCO.2008.20.0204.
  • Hodge, Nick, and Katherine Runswick-Cole. 2008. “Problematising Parent-Professional Partnerships in Education.” Disability & Society 23 (6): 637–647. doi:10.1080/09687590802328543.
  • Houliston, Mary Jane, Abdel H. Taguri, Gordon N. Dutton, Constantinos Hajivassiliou, and Daniel G. Young. 1999. “Evidence of Cognitive Visual Problems in Children with Hydrocephalus: A Structured Clinical History-Taking Strategy.” Developmental Medicine & Child Neurology 41 (5): 298–306. doi:10.1017/S0012162299000675.
  • Jackel, Bernadette, Michelle Wilson, and Elizabeth Hartmann. 2010. “A Survey of Parents of Children with Cortical or Cerebral Visual Impairment.” Journal of Visual Impairment & Blindness 104 (10): 613–623. doi:10.1177/0145482X1010401007.
  • Kong, Lingkun, Melinda Fry, Mohannad Al-Samarraie, Clare Gilbert, and Paul G. Steinkuller. 2012. “An Update on Progress and the Changing Epidemiology of Causes of Childhood Blindness Worldwide.” Journal of American Association for Pediatric Ophthalmology and Strabismus 16 (6): 501–507. doi:10.1016/j.jaapos.2012.09.004.
  • Lueck, Amanda, and Gordon N. Dutton. 2015. Vision and the Brain: Understanding Cerebral Visual Impairment in Children. New York: AFB Press.
  • Martin, Maria B., Alejandro Santos-Lozano, Juan Martin-Hernandez, Alberto Lopez-Miguel, Miguel Maldonado, Carlos Baladron, Corinna M. Bauer, and Lotfi B. Merabet. 2016. “Cerebral versus Ocular Visual Impairment: The Impact on Developmental Neuroplasticity.” Frontiers in Psychology 7: 1958. doi:10.3389/fpsyg.2016.01958.
  • McGrath, Pam, S. Kail-Buckley, and Emma Phillips. 2007. “Learning a New Language: Informational Issues for Parents of Children Treated for Acute Lymphoblastic Leukaemia.” Austral-Asian Journal of Cancer 6 (4): 205–212.
  • Mulligan, Janice, Radha MacCulloch, Bethany Good, and David B. Nicholas. 2012. “Transparency, Hope, and Empowerment: A Model for Partnering with Parents of a Child with Autism Spectrum Disorder at Diagnosis and Beyond.” Social Work in Mental Health 10 (4): 311–330. doi:10.1080/15332985.2012.664487.
  • Olin, S. Serene, Kimberly E. Hoagwood, James Rodriguez, Marleen Radigan, Geraldine Burton, Mary Cavaleri, and Peter S. Jensen. 2010. “Impact of Empowerment Training on the Professional Work of Family Peer Advocates.” Children and Youth Services Review 32 (10): 1426–1429. doi:10.1016/j.childyouth.2010.06.012.
  • Owens, Pamela L., Kimberly Hoagwood, Sarah M. Horwitz, Philip J. Leaf, Jeanne M. Poduska, S. G. Kellam, and Nicholas S. Ialongo. 2002. “Barriers to Children’s Mental Health Services.” Journal of the American Academy of Child & Adolescent Psychiatry 41 (6): 731–738. doi:10.1097/00004583-200206000-00013.
  • Pescosolido, Bernice A., Peter S. Jensen, Jack K. Martin, Brea L. Perry, Sigrun Olafsdottir, and Danielle Fettes. 2008. “Public Knowledge and Assessment of Child Mental Health Problems: Findings from the National Stigma Study-Children.” Journal of the American Academy of Child & Adolescent Psychiatry 47 (3): 339–349. doi:10.1097/CHI.0b013e318160e3a0.
  • Philip, Swetha S., and Gordon N. Dutton. 2014. “Identifying and Characterising Cerebral Visual Impairment in Children: A Review.” Clinical and Experimental Optometry 97 (3): 196–208. doi:10.1111/cxo.12155.
  • Prezant, Fran Pollock, and Laura Marshak. 2006. “Helpful Actions Seen through the Eyes of Parents of Children with Disabilities.” Disability & Society 21 (1): 31–45. doi:10.1080/09687590500373767.
  • Rafferty, Katherine A., and Shelbie L. Sullivan. 2017. “You Know the Medicine, I Know My Kid”: How Parents Advocate for Their Children Living with Complex Chronic Conditions.” Health Communication 32 (9): 1151–1160. doi:10.1080/10410236.2016.1214221.
  • Rahi, Jugnoo S., Irene Manaras, Helena Tuomainen, and Gillian L. Hundt. 2004. “Meeting the Needs of Parents around the Time of Diagnosis of Disability among Their Children: Evaluation of a Novel Program for Information, Support, and Liaison by Key Workers.” Pediatrics 114 (4): e477–82. doi:10.1542/peds.2004-0240.
  • Sakki, Hanna E. A., Naomi J. Dale, Jenefer Sargent, Teresa Perez-Roche, and Richard Bowman. 2018. “Is There Consensus in Defining Childhood Cerebral Visual Impairment? a Systematic Review of Terminology and Definitions.” The British Journal of Ophthalmology 102 (4): 424–432. doi:10.1136/bjophthalmol-2017-310694.
  • Sawyer, R. K. 2006. “Introduction. The New Science of Learning.” In The Cambridge Handbook of the Learning Sciences, edited by R. K. Sawyer, 1–16. Cambridge, UK: Cambridge University Press.
  • Shulman, Lawrance. 1992. The Skills of Helping Individuals, Families, and Groups. Itasca, IL: Boston University, School of Social Work: F.E. Peacock Publishers, Inc.
  • Singh, Nirbhay N., W. John Curtis, Cynthia R. Ellis, Mary W. Nicholson, Terri M. Villani, and Hollis A. Wechsler. 1995. “Psychometric Analysis of the Family Empowerment Scale.” Journal of Emotional and Behavioral Disorders 3 (2): 85–91. doi:10.1177/106342669500300203.
  • Soul, Janet, and Carey Matsuba. 2010. “Causes of Damage to the Visual Brain.” In Visual Impairment in Children Due to Damage to the Brain, edited by Gordon N. Dutton and Martin Bax, 20-40. London: Mac Keith Press.
  • Young, Stephen, Jane Shakespeare-Finch, and Patricia Obst. 2020. “Raising a Child with a Disability: A One-Year Qualitative Investigation of Parent Distress and Personal Growth.” Disability & Society 35 (4): 629–625. doi:10.1080/09687599.2019.1649637.
  • Zimmerman, Marc A. 2000. “Empowerment Theory.” In Handbook of Community Psychology, edited by J. Rappaport and E. Seidman, 43–63. Boston, MA: Springer.

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.