Session Information
08 SES 04 A, The Body, Health and Wellbeing
Paper Session
Contribution
Chronic health conditions may interfere in daily activities, social relationships, life roles, school and work performance, etc (Shaw & McCabe, 2008). Considering the ecological model of human development, particularly in children and adolescents life experiences, their chronic diseases have impact in some contexts such as family, school, hospital and peer groups (Bronfenbrenner, 1979).
In fact, as Novas & Rose (2000) admit chronic disease becomes a new family’ member and a family matter, which means that families are often involved in struggles for the recognition of their children with chronic diseases as citizens with all the rights granted to other citizens (Nunes, Filipe & Matias, 2007: 25). Attending to school setting, in spite of being considered a beneficial context to promote friendship and diversity (Mukherjee, Lightfoot & Sloper, 2002): 2001) children with chronic diseases more often experience rejection by peers, have higher levels of negative peer sociability, and have more days absent from school (Thies, 1999; Clay, Cortina, Harper & Cocco, 2004). On the other hand, it is known that not rarely people with chronic diseases are seen as receptacle of health professionals information’s based on an asymmetric patient-doctor relationship (Rose & Novas, 2003). However, the participation of the patient-citizen and the local community in healthcare is essential well with the patient as an ‘active’ subject – one who must play their part in the game of treatment and cure – is fundamental.
So that it is possible to understand the tensions and contradictions behind chronic illnesses life experiences. Might be important to recognize that although the evident limitations imposed by the diseases, these people whose needs and rights are frequently at risk face structural social and cultural barriers (Stainton, 2005). Refusing to accept the determinism as a consequence of the individual “condition” and the limitations imposed by the disease this paper highlights the rights-based perspective integrated in the Social Model (Barnes, 2007). This disability model might be “a way of getting us all to think about the things we have in common and the barriers we all face” (Oliver, 2004: 11). Therefore, in spite of considering that the concept of autonomy adds just a personal perspective to assessment of participation and intervention, the main point of this discussion highlights the social domain (Barnes, 2007). As a result, public contexts such as schools, hospitals, employments,… should be regarded as active partners in the construction of an equal and fair society that promotes a better quality of life of people with chronic disease (Stainton, 2005, Lear, 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. Bronfenbrenner, U. (1979). The Ecology of Human Development. Harvard: Harvard Press. Clay, D.; Cortina, S.; Harper, D. & Cocco, K. (2004). Schoolteachers’ experiences with childhood chronic illness. Children’s Health Care 33 (3), 227-239. Lear, J. G. (2007). Health at school: a hidden health care system emerges from the shadows. Health at school, 26 (2), 409-419. Mukherjee, S.; Lightfoot, J. & Sloper, P. (2002): Communicating about pupils in mainstream school with special health needs: the NHS perspective. Child: Care, Health & Development, 28 (1), 21-27 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. Novas, Carlos & Rose, Nikolas (2000). Genetic risk and the birth of the somatic individual. Economy and Society 29 (4), 485-513. Oliver, M. (2004). If I had a hammer: the social model in action In Swain, John; French, Sally; Barnes, Colin; Thomas Carol (eds.) Disabling Barriers – Enabling Environments 2nd edition, London, Thousand Oaks, New Delhi: Sage Publications, 8-12. Rose, Nikolas & Novas, Carlos (2003). Biological Citizenship, 1-40. In Ong, Aihwa & Collier, Stephen (eds.) Global Anthropology. Blackwell. 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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