04 SES 02 C, Putting Inclusion into Practice: The parents’ viewpoint
Historically, research on families of children with disabilities has been framed by the medical model (Tøssebro, 2000) which views disability as a biological deficit, necessarily associated with burden and grief. This body of research does not acknowledge the sociocultural contexts in which the meaning of disability is embedded, or the manner in which deficit-based hegemonic discourses shape the familial experience of having a child with a disability.
A wealth of literature has been conducted exploring the experiences of parents who have a child with a label/impairment. However, studies have been mainly quantitative in nature and have focused predominantly on mothers. This poses an issue because fathers can make important contributions to the development of their children. Understanding their experiences may improve support organized for both children and families.
Literature has suggested that more qualitative research is necessary to understand disability from the inside (Macartny, 2010). This holds particularly true for research that considers the father as a separate participant. Most research concerning parenting in general and parenting children with a disability are narrated from the mothers’ perspective (Bonsall, 2015). There is little in-depth research about fathers’ perceptions, influence and interactions in parenting a child with a disability compared to what is known about the mothers’ side (Khanlou, 2015). Our aim is to understand fathers’ experiences of having a child with disability and how their experiences can improve support for both children and families.
We propose the use of narrative inquiry, theoretically grounded in sociocultural perspectives, as a critical research methodology for situating the lives of these families in cultural and sociopolitical contexts. Narrative inquiries complicate conclusions drawn from the medical model and contribute to new insights on the ways in which interpretations of having a child with a disability are mutually negotiated between individuals and society(Lalvani & Polvere,2013). This is a work in progress and is still taking its shape. In 2016 Disability Studies researchers from different European countries met and started to built a collection of fathers stories. Fathers of children with a label/impairment were asked to share videoclips of their children as a start to participate in pilot-interviews about their fathering experiences, their dreams and hopes for their children. We gave them following instructions: We would like you to bring some videos of your child that you would wish to share with others. It might be how you want your child to be seen or represents how you see them or a particular aspect of them or their lives. It could be something that depicts or shows your relationship with the child. We are not seeking a full life story of your child or something that encapsulates everything about them. The video or videos can have been taken in any context or situation, it could be unedited or edited, filmed on any technology as long as you can show it to us on a piece of technology you use. It could have been filmed by you or anyone else. It could be a few seconds long, a longer film or part of a longer film. You could choose two or three clips (or perhaps more), but the maximum amount of time we could spend watching the videos is 15 minutes. An open-ended questionare (Creswell, 2012) was designed to discuss the videoclips with the fathers. Example of questions are f.exp: • Why did you choose this video? • Tell us about your child/ about your family/ about what you do together? • Tell me about your relationship with your child. (In what way has choosing this film made you reflect on your relationship with your child?) • To what extend has this film made you reflect about your experience of fathering?/Tell me about your experience of fathering. • What have I not noticed that you wanted me to notice?
In this presentation we present at one hand a rhizomatic analysis (Deleuze and Guattari, 1987) of the first collection of ‘pilot interviews’. On the other hand we want to share a first attempt of a meta-ethnography (Britten and Pope, 2012) based on a systematic literature review as prepared in 2017. With the above described two entrances we hope to move back and forth between the stories we collected and the material as described in the small amount of available research literature following the tradition of the ‘naturalistic retroduction’ (Van Hove et al., 2009). This should bring us to an emergent ‘second level’ moving beyond the individual cases. The stories we have already collected and started to analyse give an insight into how fathers see their participation as an opportunity to reflect on their relationship with their children in a different way than before. Here is an example from one father: First, I found the interview and the preparation valuable as it was an opportunity (obligation) to sit down and think about my situation and in particular my relationship with my daughter. Even if I’ve thought a lot about various issues through the days, I had not reflected deeply on some of the aspects of our relationship and in particular the importance of many seemingly ordinary and daily activity. In choosing the videos I realized that most of our videos are from “special occasions”, and did not cast particularly good light on the real/normal relationships in the family (as they would typically not involve normal or daily interaction/communication between family members). This might not be a hindrance in encouraging fathers to go deeper and open up, but for me I found the experience of thinking about the interview and making the video I wanted to make to describe the relationship between me and my daughter, a useful one.
Bonsall, A. (2015). Scenes of fathering: The automobile as a place of occupation. Scandanavian Journal of Occupational Therapy, 22(6), 462-469. Britten, N. and Pope, C. (2011) Medicine Taking for Asthma: A Worked Example of Meta-Ethnography, in Synthesizing Qualitative Research: Choosing the Right Approach (eds K. Hannes and C. Lockwood), John Wiley & Sons, Ltd, Chichester, UK. doi: 10.1002/9781119959847.ch3 Creswell, J. W. (2012). Educational research: Planning, conducting and evaluating quantitative and qualitative research (4th ed.). Boston: Pearson. Deleuze, G. and Guattari, F. (1987). A thousand Plateaus. Capitalism and Schizophrenia. London: Continuum Khanlou et al. (2015). Stressors and Barriers to Services for Immigrant Fathers Raising Children with Developmental Disabilities. Int J Ment Health Addiction. 13, 659-674. Macartney, B. (2010). Living on the edge of the Normal Curve: ’It’s like a Smack in the Head’. In C. Dudley-Marling and A. Gurn (Eds.), The myth of the Normal Curve (pp.205-221). New York: Peter Lang Publishing, 205-220. Lalvanin, P. and Polvere, L. (2013). Historical perspectives on studying families of children with disabilities: A case for critical research. Disability Studies Quarterly, 33(3). Retrieved from: http://dsq-sds.org/article/view/3209/3291 Tøssebro, J. (2000). Introduction to the Special issues: Understanding disability. Scandinavian Journal of Disability Research, 2(1), 3–7. Retrieved from http://www.tandfonline.com/doi/abs/10.1080/15017410409512635#.VghTr7QTNPM Van hove et/ al. (2009). Working with mothers and fathers of children with disabilities: Metaphors used by parents in a continuing dialogue. European Early Childhood Education Research Journal 17(2), 187-201. Doi:10.1080/13502930902951379
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