Parents of Children with Disabilities Benefit from the Internet for Development, Learning, and Connecting

0*, Jessika C. Boles**
* Assistant Professor in the Educational Psychology Department, University of Memphis.
** Child life specialist, St. Jude Children's Research Hospital.
Periodicity:March - May'2011
DOI : https://doi.org/10.26634/jsch.6.4.1433

Abstract

Good Parenting!  What it means and being prepared to do it is highly ambiguous in nature.  Most parents-to-be want to be good parents and readily believe they are prepared to be good parents.  That is until the baby arrives.  With every birth comes an even distribution of positive and negative thoughts and emotions.  In typically developing pregnancies and problem-free births the positive features are more prominent but this can change dramatically when parents are faced with discovering their unborn fetus or their child has a genetic abnormality, birth defect, disability, or chronic illness.  Children with serious medical illnesses and chronic disabilities endure many obstacles as they persist through cognitive, social, and emotional developmental milestones.  Technology can function as a tool to help accomplish crucial tasks of parenthood by promoting many aspects of child development (Blanchard, 1997).  However, a gap in the literature persists when it comes to how new technologies can provide critical information and support for parenting children with disabilities or chronic illnesses.  The focus of this paper is on how new technologies can supplement and provide a type of co-parenting support for parents of children with disabilities or chronic illnesses.

Keywords

Technologies, Parenting children with illness or disability.

How to Cite this Article?

Winsor ,D.L. and Boles,J.K.(2011). Parents Of Children With Disabilities Benefit From The Internet For Development, Learning And Connecting.i-manager’s Journal on School Education Technology, 6(4),7-25. https://doi.org/10.26634/jsch.6.4.1433

References

[1]. Baum, L.S. (2004). Internet parent support groups for primary caregivers of a child with special health care needs. Pediatric Nursing, 30(5), 381-401.
[2]. Baker, L., Wagner, T.H., Singer, S., & Bundorf, M.K. (2003). Use of the internet and email forhealthcare information: Results from a national survey. JAMA, 289(18), 2400-2406.
[3]. Baron, N. S. (2005). Instant messaging and the future of language.Communications, 48(7),29-33.
[4]. Bernhardt, J.M., & Felter, E.M. (2003). Online pediatric information seeking among mothers of young children: Results from a qualitative study using focus groups. Journal of Medical Internet Research, 6(1), e7-e18.
[5]. Besio, S. (22002). An Italian research project to study the play of children with motor disabilities: the first year of activity. Disability and Rehabilitation, 24, 72-79.
[6]. Birch, D.A. (1998). Identifying sources of social support.Journal of School Health, 68, 159-164.
[7]. Bitterman, A., Daley, T.C., Misra, S., Carlson, E., & Markowitz, J. (2008). A national sample of preschoolers with autism spectrum disorders: Special education services and parent satisfaction. Journal of Autism and Developmental Disorders, 38, 1509-1517.
[8]. Bjorklund, D. F., Yunger, J.L., & Pellegrini, A.D. (2002). The evolution of parenting and evolutionary approaches to childrearing. In M. Bornstein (Ed.), Handbook of parenting volume 2: Biology and ecology of parenting (pp. 3-30). Mahwah, NJ: Lawrence Erlbaum.
[9]. Blackburn, C., & Read, J. (2005). Using the internet? The experiences of parents of disabled children.Child: Care, Health, and Development, 31, 507-515.
[10]. Blanchard, J. (1997). The family-school connection and technology. Proceedings of the Families, Technology, and Education Conference, USA, 235-245. Retrieved from: http://www.eric.ed.gov/ERICWebPortal/search/detailmini.jsp?_nfpb=true&_&ERICExtSearch_SearchValue_0=ED425018&ERICExtSearch_SearchType_0=no&accno=ED425018.
[11]. Brodin, J. (2000). Computers as tools for play and communication for children with disabilities. International Conference on Technology and Persons with Disabilities. Retrieved from: www.csun.edu/cod/conf/2000/ proceedings/0173Brodin.htm.
[12]. Brotherson, M. J., & Goldstein, B. L. (1992). Time as a resource and constraint for parents of young children with disabilities: Implications for early intervention services. Topics in Early Childhood Special Education, 12(4), 508-527.
[13]. Campbell, P.H. (2004). Participation-based services. Promoting children's participation in natural settings. Young Exceptional Children, 8(1), 20-29.
[14]. Campbell, P.H., Milbourne, S., Dugan, L.M., & Wilcox, M.J. (2006). A review of evidence on practices for teaching young children to use assistive technology devices. Topics in Early Childhood Special Education, 26(1), 3-13.
[15]. Christian, S.M., Kieffer, S.A., & Leonard, N.J. (2001). Medical genetics and patient use of the internet. Clinical Genetics, 60, 232-236.
[16]. Cook, A.M., Adams, K., Volden, J., Harbottle, N., & Harbottle, C. (2010). Using Lego robots to estimate cognitive ability in children who have severe physical disabilities. Disability & Rehabilitation: Assistive Technology, 0(0), 1-9.
[17]. Davis, H., Gibbs, M. R., Arnold, M., & Nansen, B. (November, 2008). From exotic to mundane: Longitudinal reflections on parenting and technology in the connected family home. Paper presented at SimTech 2008, Cambridge, UK.
[18]. DesGeorges, J. (2003). Family perceptions of early hearing, detection, and intervention systems: Listening to and learning from families. Mental Retardation and Developmental Disabilities Research Reviews, 9, 89-93.
[19]. Farmer, J.E., Marien, W.E., Clark, M.J., Sherman, A., & Selva, T.J. (2004). Primary care supports for children with chronic health conditions: Identifying and predicting unmet family needs. Journal of Pediatric Psychology, 29(5), 355-367.
[20]. Feudtner, C., Villareale, N.L., Morray, B., Sharp, V., Hays, R.M., & Neff, J.M. (2005). Technology-dependency among patients discharged from a children's hospital: A retrospective cohort study. BMC Pediatrics, 5, 8.
[21]. Floyd, K.K., Canter, L.L.S., Jeffs, T., & Judge, S.A. (2008). Assistive technology and emergent literacy for preschoolers: A literature review. Assistive Technology Outcomes and Benefits, 5(1), 92-102.
[22]. Goldin-Meadows, S., & Mayberry, R. (2001). How do Profoundly Deaf Children Learn to Read? Learning Disabilities Research and Practice 16(4), 222-229.
[23]. Goldman, A., Lowman, J., Bryen, D. N., & Lemanowicz, J. (2000). Assistive technology use by students in Pennsylvania (Brief Report #1). Philadelphia: Institute on Disabilities/UAP, Temple University.
[24]. Gringas, P., Santosh, P., & Baird, G. (2006). Development of an Internet-based real-time system for monitoring pharmacological interventions in children with neurodevelopmental and neuropsychiatric disorders. Child: Care, Health, and Development, 32(5), 591-600.
[25]. Gross, E. F. (2004). Adolescent Internet use: What we expect, what teens report. Journal of Applied Developmental Psychology, 25, 633-649.
[26]. Hanline, M.F., Nunes, D., & Worthy, M.B. (2007). Augmentative and alternative communiation in the early childhood years. Young Children, 63, 78-82.
[27]. Hansen, L. (2008). Evidence and outcomes for power mobility intervention with young children. CASEmakers, 4(1), 1-5.
[28]. Heiman, T. (2002). Parents of children with disabilities: Resilience, coping, and future expectations. Journal of Developmental and Physical Disabilities, 14(2), 159-171).
[29]. Helm, D.T., Miranda, S., & Chedd, N.A. (1998). Prenatal diagnosis of Down syndrome: Mothers' reflections on supports needed from diagnosis to birth. Mental Retardation, 36, 55-61.
[30]. http://www2.ed.gov/about/reports/annual/ 2005report/allprogs.pdf - This is where I got the office of special education programs 2005 reference. It's an annual report on Program performance – I don't know how to cite this one either!
[31]. Huang, k., Smith, J., & Spreen, K. (2008). Breaking the sound barrier: Designing an interactive tool for language acquisition in preschool deaf children. Proceedings of the Seventh Annual International Conference on Interaction Design and Children, New York, NY.
[32]. Hustad, K.C., Keppner, K., Schanz, A., & Berg, A. (2008). Augmentative and alternative communication for preschool children: Intervention goals and use of technology. Seminars in Speech and Language, 19(2), 83-91.
[33]. Huws, J. C., Jones, R.S.P., & Ingledew, D.K. (2001). Parents of children with autism using an email group: A grounded theory study. Journal of Health Psychology, 6(5), 569-584.
[34]. Ikemba, C.M., Kozinetz, C.A., Feltes, T.E., Fraser, C.D., McKenzie, E.D., Shah, N., et al. (2002). Internet use in families with children requiring cardiac surgery for congenital heart disease. Pediatrics, 109, 419-422.
[35]. Individuals with Disabilities Education Act Amendments, 20 U.S.C. §§ 14OO et seq. (2004).
[36]. Ji, E-K., Pretorius, D. H., Newton, R., Uyan, K., Hull, A. D., Hollenbach, K., & Nelson, T. R. (2005). Effects of ultrasound on maternal-fetal bonding: A comparison of two- and three-dimensional imaging. Ultrasound Obstetrics and Gynaecology, 25, 473-477.
[37]. Jones, M.A., McEwen, I.R., Hansen, L. (2003). Use of power mobility for a young child with spinal muscular atrophy. Physical Therapy, 83(3), 253.
[38]. Jones, R.S.P., & Lewis, H. (2001). Debunking and pathological model – The functions of an Internet discussion group. Down Syndrome Research and Practice, 6, 123-127.
[39]. Judge, S. (2002). Family-centered assistive technology assessment and intervention practices for early intervention. Infants & Young Children, 15, 60-68.
[40]. Judge, S. (2006). Constructing an assistive technology toolkit for young children: Views from the field. Journal of Special Education Technology, 21(4), 17-24.
[41]. Judge, S., Floyd, K., & Wood-Fields, C. (2010). Creating a technology-rich learning environment for infants and toddlers with disabilities. Infants & Young Children, 23(2), 84-92.
[42]. Kearney, P.M., & Griffin, T. (2001). Between joy and sorrow: Being a parent of a child with developmental disability. Journal of Advanced Nursing, 34(5), 582-592.
[43]. Kinder, M. (1991). Playing with power in movies, television, and video games. Berkley: University of California Press.
[44]. King, G., Cathers, T., King, S., & Rosenbaum, P. (2001). Major elements of parents' satisfaction and dissatisfaction with pediatric rehabilitation services. Children's Health Care, 30, 111-134.
[45]. Khoo, K., Bolt, P., Babl, F.E., Jury, S., & Goldman, R.D. (2008). Health information seeking by parents in the internet age. Journal of Pediatrics and Child Health, 44, 419-423.
[46]. Lainhart, J.E. (1999). Psychiatric problems in individuals with autism, their parents and siblings. International Review of Psychiatry, 11, 278-299.
[47]. Lehrer, R., Harckham, L., Archer, P., & Pruzek, R. (2986). Micro-computer-based instruction in special education. Journal of Educational Computing Research, 2, 337-355.
[48]. Lenhart, A., Simon, M., & Graziano, M. (2001). The Internet and education: Finding of the Pew Internet & American Life Project. Access ERIC: FullText (143 Reports-Research). Washington, DC: Pew Internet and American Life Project.
[49]. Letuhner, S. R., Bolger, M., Frommelt, M., & Nelson, R. (2003). The impact of fetal echocardiography on expectant parents' experience of pregnancy: A pilot study. Journal of Psychosomatic Obstetrics and Gynecology, 24(2), 121-129.
[50]. Lindstrand, P., & Brodin, J. (2004). Is information and communication technology an opportunity for parents of children with disabilities? International Journal of Rehabilitation Research, 27, 113-118.
[51]. Long, T., Huang, L., Woodbridge, M., Woolverton, M., & MInckel, J. (2003). Integrating assistive technology into an outcome-driven movel of service delivery. Infants & Young Children, 16, 272-283.
[52]. Marti, A.P., Pollini, A.R., Giusti, L., & Gronvall, E. (2009, June). Creative interactive play for disabled children. 8th International Conference on Interaction Design and Children, Como, Italy.
[53]. McCormick, L. (2987). Comparison of the effects of a microcomputer activity and toy play on social and communication behaviors of young children. Journal of the Division for Early Childhood, 11, 195-205.
[54]. McWilliam, R. A., & Scott, S. (2001). A support approach to early intervention: A three-part framework. Infants & Young Children, 13, 55-66.
[55]. Milner, J., Bungay, C., Jellinek, D., & Hall, D.M.B. (1996). Needs of disabled children and their families. Archives of Disease in Childhood, 75, 399-404.
[56]. Min, L. (1996). An exploratory study of how pre-kindergarten children use the interactive multimedia technology: Implications for multimedia software design. Unpublished Manuscript. Retrieved from: http://eric.ed.gov/ERICWebPortal/search/detailmini.jsp?_nfpb=true&_&ERICExtSearch_SearchValue_0=ED396713&ERICExtSearch_SearchType_0=no&accno=ED396713.
[57]. Montes, G., & Halterman, J.S. (2007). Psychological functioning and coping among mothers of children with autism: A population-based study. Pediatrics, 119, e1040-e1046.
[58]. Nkabinde, Z. P. (2008). Using assistive technology to educate students with developmental disabilities and autism. Advances in Special Education, 18, 273-285.
[59]. Norris, D.M., & Hoyer, P.J. (1992). Dynamism in practice: Parenting within King's framework. Nursing Science Quarterly, 6(2), 79-85).
[60]. Ostensjo, S. (2009). Assistive devices for children with disabilities. In I. Soderback (Ed.), International handbook of occupational therapy interventions. ; Springer.
[61]. Palermo, T.M., Wilson, A.C., Peters, M., Lewandowski, A., & Somhegyi, H. (2009). Randomized controlled trial of an internet-delivered family cognitive-behavioral therapy intervention for children and adolescents with chronic pain. Pain, 146, 205-213.
[62]. Pew. Reports: Technology and media usage, home broadband adoption. Pew Internet and American Life Project, 2007.
[63]. Pianta, R.C., Egeland, B., Hyatt, A. (1986). Maternal relationship history as an indicator of developmental risk. American Journal of Orthopsychiatry, 56(3), pp. 385-398.
[64]. 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.
[65]. Ragonesi, C.B., Chen, X., Agrawal, S., & Galloway, J.C. (2010). Power mobility and socialization in preschool: A case study of a child with cerebral palsy. Pediatric Physical Therapy. 22, 322-329.
[66]. Rahi, J.S., Manaras, I., Tuomainen, H., Hundt, G.L. (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, c477-c482.
[67]. Rice, R. E. (2001). The internet and health communication: A framework of experience. In R. E. Rice & J.E. Katz (Eds.), The Internet and health communication: Experiences and expectations (pp. 5-46). Thousand Oaks, CA: Sage.
[68]. Romski, M., & Sevcik, R.A. (2005). Augmentative communication and early intervention: Myths and realities. Infants & Young Children, 18, 174-185.
[69]. Rose, D.H., & Meyer, A. (2002). Teaching every student in the digital age: Universal design for learning. Alexandria, VA: ASCD.
[70]. Sevcik, R.A., Romski, M.A., & Adamson, L.B. (2004). Research directions in augmentative and alternative communication for preschool children. Disability & Rehabilitation, 26, 1323-1329.
[71]. Shih, C-H., & Shih, C-T. (2010). Assisting two children with multiple disabilities and minimal motor skills control environmental stimuli with thumb poke through a trackball. Behavioral and Cognitive Psychotherapy, 38, 211-219.
[72]. Skinner, D., & Schaffer, R. (2006). Families and genetic diagnoses in the genomic and internet age. Infants & Young Children, 19(1), 16-24.
[73]. Spiegel-McGill, P., Zippiroli, S., & Mistrett, S. (1989). Microcomputers as social facilitators in integrated preschools. Journal of Early Intervention, 12, 249-260.
[74]. Spooner, T.&Rainie, L. (2001). African-Americans and the internet. Pew Internet & American Life Project [On-line]. Available: http://www.pewinternet.org/reports/index.asp.
[75]. Sturges, J.W. (1998). Practical use of technology in professional practice. Professional Psychology: Research and Practice, 29, 183-188.
[76]. Sullivan, M., & Lewis, M. (2000). Assistive technology for the very young: Creating a responsie environment. Infants & Young Children, 12, 34-52).
[77]. Tam, C., Schwellnus, H., Eaton, C., Hamdani, Y., Lamont, A., & Chau, T. (2007). Movement-to-music computer technology: A developmental play experience for children with severe physical disabilities. Occupational therapy International, 14(2), 99-112.
[78]. Tsai, W.-C., Tsai, J.-L., & Shyu, Y-I.L. (2008). Integrating the nurturer-trainer roles: Parental and behavior/symptom management processes for mothers of children with autism. Social Science & Medicine, 67, 1798-1806.
[79]. U.S. Census Bureau, Statistical Abstract of the United States: 2011 (130th Edition) Washington, DC, 2010; http://www.census.gov/statab/www/.
[80]. U.S. Department of Commerce (2002). A nation online: How Americans are expanding their use of the internet. U.S. Department of Commerce [On-Line]. Available: http://www.ntia.doc.gov/ntia-home/dn/index. html.
[81]. Van Der Lee, J.H., Mokkink, L.B., Grootenhuis, M.A., Heymans, H.S., & Offringa, M. (2007). Definitions and measurement of chronic health conditions in childhood: A systematic review. Journal of the American Medical Association, 297, 2741-2751.
[82]. Wade, S.., Carey, J., & Wolfe, C.R. (2006). An online family intervention to reduce parental distress following pediatric brain injury. Journal of Consulting and Clinical Psychology, 74(30, 445-454.
[83]. Wade, S.L., Taylor, H. G., Drotar, D., Stancin, T., &Yeates, K.O. (1998). Family burden and aapation following traumatic brain injury (TBI) in children. Pediatrics, 102, 110-116.
[84]. Wade, S.L., Taylor, H.G., Drotar, D., Stancin, T., & Yeates, K.O. (2002). A prospective study of long-term caregiver and family adaptation following brain injury in children. Journal of Head Trauma Rehabilitation, 17, 96-111.
[85]. Wilcox, M.J., Dugan, L.M., Campbell, P.H., & Guimond, A. (2006). Recommended practices an parent perspectives regard AT use in early intervention. Journal of Special Education Technology, 21(4), 7-16.
[86]. Wilcox, M.J., Guimond, A., Campbell, P.H., & Moore, H.W. (2006). Provider perspectives on the use of assistive technology for infants and toddlers with disabilities. Topics in Early Childhood Special Education, 26(1), 33-49.
[87]. Williams, K., & Umberson, D. (1999). Medical technology and childbirth: Experiences of expectant mothers and fathers. Sex Roles, 41(314), 147-168.
[88]. Wright, B., Williams, C., & Partridge, I. (1999). Management advice for children with chronic fatigue syndrome: A systematic study of information from the internet. The Irish Journal of Psychological Medicine, 16(2), 67-71.
[89]. Wu, H. (1997). Students' conversations we have never heard: Transparencies on the listserv. Phoenix, AZ: Annual Meeting of the Conference on College Composition and Communication. (ERIC Document Reproduction Service No. ED406684). Retrieved August 29, 2007, from http://www.eric.ed.gov/ERICDocs/data/ericdocs2sq1/content_storage_01/0000019b/80/16/7c/32.pdf.
[90]. Zaidman-Zait, A., & Jamieson, J. R. (2004). Searching for cochlear implant information on the Internet maze: Implications for deaf parents and professionals. Journal of Deaf Studies and Deaf Education, 9, 413-426.
[91]. Zevenbergen, R., & Logan, H. (2008). Computer use by preschool children: Rethinking practice as digital natives come to preschool. Australian Journal of Early Childhood, 33(1), 37-44.
If you have access to this article please login to view the article or kindly login to purchase the article

Purchase Instant Access

Single Article

North Americas,UK,
Middle East,Europe
India Rest of world
USD EUR INR USD-ROW
Online 15 15

Options for accessing this content:
  • If you would like institutional access to this content, please recommend the title to your librarian.
    Library Recommendation Form
  • If you already have i-manager's user account: Login above and proceed to purchase the article.
  • New Users: Please register, then proceed to purchase the article.