How to adapt illness to existence: the experience of chronic diseases during childhood

Journal title WELFARE E ERGONOMIA
Author/s Anna Rosa Favretto, Francesca Zaltron
Publishing Year 2019 Issue 2018/1 Language Italian
Pages 15 P. 87-101 File size 200 KB
DOI 10.3280/WE2018-001005
DOI is like a bar code for intellectual property: to have more infomation click here

Below, you can see the article first page

If you want to buy this article in PDF format, you can do it, following the instructions to buy download credits

Article preview

FrancoAngeli is member of Publishers International Linking Association, Inc (PILA), a not-for-profit association which run the CrossRef service enabling links to and from online scholarly content.

The paper places itself within the framework of childhood studies and in the wider reflection on the rights of children, including the right to health. It refers to some results of the research conducted with children and their caregivers, presenting the two different perspectives. It also compares adult and child representations of the skills that children recognize for themselves, and that adults attribute to them. The research was carried out in Turin with a reasoned choice sample of boys and girls aged 8 and 12, affected by type 1 diabetes or asthma, their parents and their carers. It is noted that the skills which structure the relationship with the disease increase and consol-idate most in relation to the experience of being ill rather than with growing up. The experi-ence of chronic illness becomes a "gymnasium" for the expression of the child agency and for the structuring of wider childhood skills. The comparison shows that the experience of being ill for young people does not have a total-izing meaning, capable of stabilizing the status of patient as the dominant one. Conversely, this experience takes on a dynamic and changing meaning according to the contexts and needs of daily life. This allows all of them to consider themselves as entities with agency and to show that they, in order to face the disease, know how to use both biomedical and relation-al skills.

Keywords: Childhood Studies; chronic diseases; childhood; diabetes and asthma; childhood agency

  1. Baker R. (1998). Runaway street children in Nepal: social competence away from home. In: Hutchby I. and Moran-Ellis J., editors, Children and social competence. Arena of action. London and New York: Routledge, pp. 46-63.
  2. Christensen P.H. (1998). Difference and similarity: how children’s competence is constituted in illness and its treatment. In: Hutchby I. and Moran-Ellis J., editors, Children and social competence. Arenas of action. New York: Routledge, pp. 187-201.
  3. Clark C.D. (2003). In sickness and in play. Children coping with chronic illness. New Brunswich, New Jersey, London: Rutgers University Press.
  4. Favretto A.R. e Zaltron F. (2013). Mamma non mi sento tanto bene. La salute e la malattia nei saperi e nelle pratiche infantili. Roma: Donzelli Editore.
  5. Fin C. (2016). I requisiti del consenso al trattamento medico. In: Quagliariello C. e Fin C., Il consenso informato in ambito medico. Bologna: il Mulino, pp. 164-169.
  6. Hutchby I. and Moran-Ellis J. (1998). Situating children's social competence. In: Hutchby I. and Moran-Ellis J., editors, Children and social competence. Arena of action. London and New York: Routledge, pp. 7-26.
  7. James A. (2009). Agency. In: Qvortrup J., Corsaro W.A. and Honig M.S., editors, The Palgrave handbook of childhood studies. Basingstoke: Palgrave Macmillan.
  8. Jutel A. (2009). Sociology of diagnosis: a preliminary review. Sociology of Health & Illness, 31(2): 278-289.
  9. Ladd G.W. (2005). Children’s peer relations and social competence. A century of progress. New Haven and London: Yale University Press.
  10. Mayall B. (1994). Negotiating health: primary school children at home and school. London: Cassell.
  11. Mayall B. (2002). Towards a sociology for childhood: thinking from children’s lives. Buckingham: Open University Press.
  12. Mayall B. (2015). Understanding inter-generational relation: The case of health maintenance by children. Sociology of Health & Illness, 37: 312-324. DOI: 10.1111/1467-9566.12227
  13. Prout A., Hayes L. and Gelder L. (1999). Medicines and the maintenance of ordinariness in the household management of childhood asthma. Sociology of Health & Illness, 21(2): 137-162. DOI: 10.1111/1467-9566.00147
  14. Reynaert D., Bouverne-De Bie M. and Vandevelde S. (2009). A Review of children’s rights literature since the adoption of the United Nations Conventions on the Rights of the Child. Childhood, 16(4): 518-534. DOI: 10.1177/0907568209344270
  15. Rondot P. (2013). Dalle competenze al competenziare. Casale Monferrato: Sonda.
  16. Ruo M.G. (2015). La mitezza nelle istituzioni sanitarie: malattie, fine vita e diritti della persona in età minore e dei suoi familiari. Minorigiustizia, 1: 219-236. DOI: 10.3280/MG2015-001027
  17. Sanderson T., Calnan M., Morris M., Richards P. and Hewlett S. (2011). Shifting normalities: interactions of changing conceptions of a normal life and the normalization of symptoms in rheumatoid arthritis. Sociology of Health & Illness, 33(4): 618-633.
  18. Schneider B.H. (1993). Sequence Children’s social competence in context. The contribution of family, school and culture. Oxford: Pergamon Press.
  19. Turri G.C. (1999). Dritto alla salute, minorenni e libertà di cura. Questione giustizia, 3: 473-479.
  20. Westera W. (2001). Competences in education: a confusion of tongue. Curriculum Studies, 33(1): 75-88. DOI: 10.1080/00220270120625

Anna Rosa Favretto, Francesca Zaltron, Come adeguare la malattia all’esistenza: l’esperienza delle malattie croniche durante l’infanzia in "WELFARE E ERGONOMIA" 1/2018, pp 87-101, DOI: 10.3280/WE2018-001005