Look Who's Talking - Inclusive Perspectives on Family-centered Support for Families with Deaf Children that Have Cochlear Implants
Author(s):
Marieke Bruin (presenting / submitting)
Conference:
ECER 2012
Format:
Paper

Session Information

04 SES 02 C, Parents’ Views II

Parallel Paper Session

Time:
2012-09-18
15:15-16:45
Room:
FFL - Aula 18
Chair:
Anne Nevøy

Contribution

Over the last decade, cochlear implant (CI) surgery in profoundly deaf children has become an increasingly routine provision in the Western part of the world (Archbold, Sach, O'Neill, Lutman, & Gregory, 2008; Spencer & Marschark, 2003). Most parents who choose CI for their child do this because their goal is for their child to be able to understand and develop spoken language, so that they can interact with hearing people (ASHA, 2003; Kluwin & Stewart, 2000). Meanwhile, CI is by no means an “easy” solution; it requires a long and demanding habilitation process (Spencer, 2002). Parents of implanted children typically meet several different institutions before and after cochlear implantation, which all represent alternate, distinct views on habilitation, residing in the medical, pedagogical, educational and psychological domains (see for example Strand, 2003). The Norwegian stately special educational resource system (Statped) has a mandate to support all children with special educational needs and their families in Norway. Statped provides extensive specialized support for families with implanted children. Apart from Statped there exists private support, only available for families living in local communities who are willing to pay for these services. Norwegian educational policies have emphasized inclusion as a core concept (Ministry of Education, 2006-2007) and furthermore families of children with disabilities are said to be offered coordinated and flexible services that are accommodated to their needs  (Ministry of Education, 2002-2003). Parents’ rights to participate in influencing their child’s education are emphasized in legislation (Ministry of Education, 1998, 1996) which implies that ‘all this points towards a strong parental influence on services’ (Lundeby & Tøssebro, 2008:259). However, international disability research contains an extensive body of studies reporting disregard for parental views by professionals (Lundeby & Tøssebro, 2008).

The research project is a doctoral project and consists of a series of sub-projects which involve different kinds of data sampling in order to elucidate various aspects of participation and inclusion regarding cochlear implanted children and their families. The research question for this paper seeks to elucidate how parents experience having their needs met with regard to the educational support for their implanted child, both in relation to the home and at school.

This study is embedded in the sociocultural theoretical framework. Individuals are viewed as participants in social interaction and an important aspect is how people use the symbolic and material cultural tools that their culture enables them to use, and thus the focus is on interaction between individual and community (Rogoff, 2003; Säljö, 2001; Wertsch, 1998). People use narratives to remember, and to represent the past. As such, narratives can be seen as cultural tools (Wertsch, 1998). At the level of methodology, this perspective implies that analyzing the parents’ accounts as narratives, enables us to understand their stories in such a way as to see that the parents use narrative meta-structures as a frame for understanding while constructing their accounts. As such, how do the participants in this study assemble and sequence events and use language to communicate meaning? (see Kohler Riessman, 2008).

Method

The current paper draws on the first sub-project, which is an open-question survey distributed electronically to 135 families of children with cochlear implants in Norway. The empirical data will consist of written parental accounts from the survey, describing experiences on encountering professional institutions. The analysis of the survey results will be facilitated by the use of NVivo9 software. At first, the survey data will be analyzed using content analysis (Kvale & Brinkmann, 2009) and will be based on a hermeneutical, data-driven approach closely linked to the empirical data. Part of the data will subsequently be analyzed following a narrative approach (Kohler Riessman, 2008). The goal will be to describe the parents’ subjective experiences and meaning making regarding their encounters with the professional support system in Norway in relation to their cochlear implanted child. According to Allan (2008) the people upon whom inclusion and exclusion is practiced, are the most troubling absent voices in research. Categorizing the survey data through content-analysis can provide an overview of large amounts of texts (Kvale & Brinkmann, 2009), and drawing on a narrative analytical perspective will enable a larger context which can elucidate inclusive and exclusive processes through the enhancement of the parents’ personal accounts.

Expected Outcomes

The data are expected to show extensive differences regarding the provision of support to families of children with CI, including narratives which report of needs not being met whilst parental opinions are disregarded. According to Allan, ‘parents are key authorities to their children’s needs and have many unique insights to successful inclusion strategies’ (2003:177) and in order to achieve inclusivity, it is crucial to listen to the voices of children and their parents (Allan, 2003, 2008). There seems to be a paradox between on the one hand inclusionary policy combined with a strong emphasis on the parents’ participation, and on the other hand examples of unequal provision of support, based on economical resources in local communities. The unequal distribution of support can be seen as socially excluding practices which may act as a constraint with regard to inclusion and ultimately the cochlear implanted child’s learning and development. However, it is simultaneously necessary to discuss to what extent the parents’ wishes should be fulfilled and which criteria need to be taken into account. Ultimately, why are private support systems necessary if the stately support system fulfills its inclusionary mandate and supplies support for all cochlear implanted children in Norway?

References

Allan, J. (2003). Productive pedagogies and the challenge of inclusion. British Journal of Special Education, 30(4), 175-179. Allan, J. (2008). Rethinking Inclusive Education. The Philosophers of Difference in Practice. Dordrecht: Springer. Archbold, S., Sach, T., O'Neill, C., Lutman, M., & Gregory, S. (2008). Outcomes from Cochlear Implantation for Child and Family: Parental Perspectives. Deafness and Education International, 10(3), 120-142. Kluwin, T., & Stewart, D. (2000). Cochlear implants for younger children: A preliminary description of the parental decision process and outcomes. American Annals Of The Deaf, 145(1), 26-32. Kohler Riessman, C. (2008). Narrative Methods for the Human Sciences. Thousand Oaks, CA: Sage Publications, Inc. Kvale, S., & Brinkmann, S. (2009). Interviews. Learning the Craft of Qualitative Research Interviewing. Thousand Oaks, CA: SAGE Publications Inc. Lundeby, H., & Tøssebro, J. (2008). Exploring the Experiences of "Not Being Listened To" from the Perspective of Parents with Disabled Children. Scandinavian Journal of Disability Research, 10(4), 258-274. Ministry of Education. (2002-2003). White Paper no. 40. Dismantling disabling barriers. Ministry of Education. (2006-2007). White Paper no. 16, "... and no one was left behind. Early intervention for lifelong learning". Rogoff, B. (2003). The Cultural Nature of Human Development. New York: Oxford University Press. Spencer, P. E. (2002). Language Development of Children With Cochlear Implants. In J. B. Christiansen & I. W. Leigh (Eds.), Cochlear Implants in Children. Ethics and Choices. (pp. 222-249). Washington D.C.: Gallaudet University Press. Spencer, P. E., & Marschark, M. (2003). Cochlear implants: Issues and implications. In M. Marschark (Ed.), Oxford handbook of deaf studies, language and education (pp. 434-448). New York: Oxford University Press. Säljö, R. (2001). Læring i praksis: et sosiokulturelt perspektiv. Oslo: Cappelen akademisk. Wertsch, J. V. (1998). Mind as Action. New York: Oxford University Press.

Author Information

Marieke Bruin (presenting / submitting)
University of Stavanger
Institute for Education and Sports Science (IGIS)
Stavanger

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