Session Information
25 SES 05, Children's Rights and Additional Support Needs
Paper Session
Contribution
The research presented in this paper, directly asked young people about their experiences of having long term Glue Ear with comparisons and contrasts made with the description of similar situations described by their mothers. Since the implementation of the UN Convention on the Rights of the Child (1989), there has been increasing awareness of the value of listening to, and involving, young people in research which is directly relevant to them and impacts on their performance in all aspects of their lives. Glue Ear is a form of conductive hearing loss, which is usually temporary, and intermittent. For a small proportion of young people, rather than resolving by the age of 7 years, they go on to have continuing episodes of Glue Ear with periods of deafness (Bluestone 2003). It is a condition which affects children across the globe. Generally it is considered to be a medical condition in which any consequences will resolve without long-term implications for the ‘average’ child (Paradise, Feldman, Campbell et al 2007). There has been limited research on the psycho-social aspects of the condition and how it can impact on school and home (Higson and Haggard 2005).
An important methodological consideration was listening to ‘marginalised voices’ and for participants to establish the scope of issues to be discussed. In previous research in Glue Ear, parental proxies have been the main way in which the experience of young people has been explored (Asmussen, Olson and Sullivan 1999; Dube, De Wals, Gilca et al 2011). Recent research (Lagattuta, Sayfan and Bamford 2012) suggests that parental proxies may not accurately reflect the emotional experiences of young people. Involving and listening to young people as well as their mothers was an important aspect of this research.
Photovoice (Wang and Burris 1997) was used whereby participants were asked to construct photomontages of images which depicted events, feelings and perceptions relating to their experiences of Glue Ear. The images were explained to the researcher in a participant-led discussion so that the researcher was seeing the images for the first time when they were discussed, giving control of the topics discussed to the participants. This is in contrast to the more usual situation where the researcher sets the agenda and schedule for the interview with the participant not having the opportunity to reflect on the questions and content beforehand. Photovoice is usually used in group settings rather than in one-to-one discussions as in this research. To compensate for the lack of depth of exploration of issues which happens in groups, where what one person says may trigger further thoughts and discussion in others, Interpretative Phenomenological Analysis (IPA) was used to explore the participant’s words in detail (Smith, Flowers and Larkin 2009).
This presentation focuses on a small sub-section of a larger research project. Taking a case study approach, issues described by both members of a mother-child dyad highlight the similarities and differences in perspectives about experiences in school and leisure activities. The findings highlight the importance of listening to young people, particularly in situations where the mother is not present, such as school. The words of the young people demonstrate how articulate and analytical they can be in describing their experiences and situations. The findings highlight the importance of involving them in the research process. Consideration of a wider range of ethical issues and greater creativity may be required in methods when researching with young people. The findings presented here suggest that young people provide worthwhile insight regarding effective adaptations in classroom practice. Involving young people’s perspectives in data may have greater validity than using proxies.
Method
Expected Outcomes
References
Asmussen, L., Olson, L.M. and Sullivan, S.A. (1999) “You have to live with it to understand it…” Family experiences with chronic otitis media in children in Ambulatory Child Health 5(4) 303-312 Baker, T.A. and Wang, C. (2006) Photovoice: Use of Participatory Action Research Method to Explore the Chronic Pain Experience in Older Adults. Qualitative Health Research 16 1405-1413 Bluestone, C.D. (2003) Definitions, Terminology and Classification in Rosenfeld, R.M. and Bluestone, C.D. (eds) in Evidence-Based Otitis Media 2nd edition. B C Decker Hamilton 120-135 Byrnes, L.J. and Rickards, F.W. (2011) Listening to the voices of students with disabilities: Can such voices inform practice? In Australasian Journal of Special Education 35(1) 25-34 Dube, E., DeWals, P., Gilca, V., Boulianne, N., Ouakki, M. Lavoie, F. and Bradet, R. (2011) Burden of acute otitis media on Canadian families In Canadian Family Physician, 57(1) 60-65 Goodley, D. Lawthom, R., Clough, P. and Moore, M. (2004) Researching life stories: Method, theory and analyses in a biographical age Routledge Falmer London Higson, J. and Haggard, M.P. (2005) "Parent versus Professional Views of the developmental impact of a multi-faceted condition at school age: Otitis Media with effusion (Glue Ear)" in British Journal of Educational Psychology, 75,(4): 623-643 Lagattuta, K.H., Sayfan, L. and Bamford, C. (2012) Do you know how I feel? Parents underestimate worry and overestimate optimism compared to child self-report in Journal of experimental child psychology 113(2) 211-232 Masson, J. (2000) Researching children’s perspectives: legal issues in Lewis, A. and Lindsay, G. (eds) Researching Children’s perspectives Open University Maidenhead 34-45 Nunkoosing, K. (2005) The Problems With Interviews Qualitative Health Research 15(5) 698-706. Paradise, J.L., Feldman, H.M., Campbell, T.F., Dollaghan, C.A., Rockette, H.E., Pitcairn, D.L., Smith, C.G., Colborn, D.K., Bernard, B.S. Kurs-Lasky, M., Janosky, J.E., Sabo, D.L., O’Connor, R.E. and Pelham, W.E.J. (2007) Tympanostomy tubes and developmental outcomes at 9 to 11 years of age New England Journal of Medicine Vol 18 (3) 248-261 Smith, J.A., Flowers, P. and Larkin, M. (2009) Interpretative Phenomenological Research Theory, Method and Research London Sage Wang, C. and Burris, M.A. (1997) Photovoice: Concept, Methodology, and Use for Participatory Needs Assessment. Health Education & Behavior 24(3) 369-387
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