Session Information
25 SES 02, Children’s Rights: Contextual Studies
Parallel Paper Session
Contribution
The WHO (2011) refers that heart disease, stroke, cancer, chronic respiratory diseases and diabetes are by far the leading cause of mortality in the world, representing 60% of all deaths. All them are chronic diseases and have in common the fact that they interfere with daily activities of sufferers (Stanton et al., 2007). In the family and in the hospital sphere, but also in school context, these implications are felt. The variety and ambiguity of experiences about/among chronic disease in schools make it a particularly relevant subject (Sutherland, 1981). If, on the one hand, we are able to report cases of integration and well-being, on the other, there are many episodes of discrimination. At this level, the literature recognizes that the school’s experience is desirable for children and youth with chronic illness. It is a context that enhances the creation and strengthening of social ties, promotes personal and social development and allows the access to various opportunities. However, authors as Thies (1999); Clay, Cortina, Harper & Cocco (2004), warn of certain risks. They alert to the rejection from peers and also to the difficulty in the academic performance resulting from absenteeism and fatigue.
An essential point of this work is to admit the experience at school and, moreover, the life experience of children and adolescents with chronic diseases as a collective issue. This means that it includes not only children and adolescents with chronic illness, and their families, but also their peers, their educational and health professionals, community agents, the local and global power and so on. In fact, public contexts should be regarded as active partners in the construction of an equal society (Lear, 2007). It is clearly of framing this issue in a rights paradigm that, more emphasizing needs, assumes that promoting health and fair living conditions is a the responsibility for of all. The idea of placing this issue about chronic disease in a public dimension refers implicitly to a question of citizenship. In this sense, this study highlights the importance of recognizing children and adolescents with chronic diseases as citizens who should be treated differently so that their needs are met (Stainton, 2005; Barnes, 2007).
That is because of the defense of these conditions that the families’ role in this discussion becomes unavoidable. Their efforts, combined with the support of local communities, are essential in the quality of life of people with chronic illness (Menezes, 2007). Among these communities there are chronic disease support associations, whose contribution is claiming rights, disseminating useful information, providing emotional and instrumental balance, etc. (Stainton, 2005). So, this study recognizes the centrality of these contexts in processes of Escreva texto ou o endereço de um Web site ou traduza um documento
reinforcement participation and empowerment (Paterson, 2001; Nunes, Filipe & Matias, 2007).
Method
Expected Outcomes
References
Barnes, C. (2007). Disability activism and the struggle for change: disability, policy and politics in the UK. Education, Citizenship and Social Justice 2, 203-221. Clay, D.; Cortina, S.; Harper, D. & Cocco, K. (2004) Schoolteachers experiences with childhood chronic illness, Children’s Health Care 33 (3), 227-239. Greene, J. C., Kreider, H., & Mayer, E. (2004) Combining qualitative and quantitative methods in social inquiry, in B. Somekh & C. Lewin (Eds) Research methods in the social sciences. Thousand Oaks, CA: Sage. Lear, J. G. (2007). Health at school: a hidden health care system emerges from the shadows. Health at school, 26 (2), 409-419. Menezes, I. (2007) Intervenção Comunitária. Uma Perspectiva Psicológica. Porto: Livpsic. Nunes, J. A., Filipe, A. M. & Matias, M. (2007). The dynamics of patient organizations in european area: The case of Portugal. Meduse. Governance, Health and Medicine: Opening Dialogue between social scientists and users. 1-67 Unpublished research report, CES. Paterson, B. (2001) Myth of empowerment in chronic illness, Journal of Advanced Nursing, 34 (5), 574-581. Sutherland, A. (1981). Disabled We Stand. London: Souvenir Press. Stainton, T. (2005). Empowerment and the architecture of rights based social policy. Journal of Intellectual Disabilities 9, 289-298. Thies, K. (1999). Identifying the educational implications of chronic illness in school children. Journal of School Health 69 (10), 392-397.
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