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Integritet på undantag?: En studie av barns röst i patientlagen och patientorganisationer
Ersta Sköndal Bräcke University College, Department of Social Sciences.
2019 (Swedish)Doctoral thesis, monograph (Other academic)
Abstract [en]

This thesis explores discourses regarding children’s voice, in the Swedish Patient Act, as well as in Swedish patient organizations. In the Patient Act, children’s rights as patients are construed on the basis of custodians’ parental rights and the assumption that patients are competent and autonomous adults. The child is given an object position, weaker than an adult patient and subordinated to parents’ authority. Consequently, the integrity of the child is not absolute, as it is construed through an autonomy discourse and a family discourse which set boundaries for the child´s voice in the Patient Act. The family discourse combined with a mass movement discourse form the prerequisits for children’s voice in the context of patient organizations. As a consequence, patient organizations do not act as voice in relation to children’s rights as patients, in the Patient Act. Rather, interviews with representatives of patient organizations show that the parents act as voice having a child in need of health care. The position of children in the organizationsis ambiguous and, rather than having a voice of their own, children can be used in advertising campaigns to attract funding, expressing the voice of the organization. When children are used in this way by organizations, children’s integrity seem to be negotiable. The thesis shows that in both the Patient Act and the patient organizations, the integrity of the child is questioned. Children seem to be regarded as imperfect rights-holders and as imperfect members of society.This perception of the child is traced to dominant ethical perspectives from which children’s human rights have emerged. Drawing on current academic debates, analternative approach to these prevailing ethical perspectives is suggested. Instead of making rights conditional upon presumed autonomy and adulthood, rights can be perceived as relational and expressions of the mutual interdependence of humans, regardless of age and maturity. If rights are seen in this way, with children being understood not as essentially different but differently equal, then the child´s voice can have actual importance.

Place, publisher, year, edition, pages
Stockholm: Ersta Sköndal Bräcke högskola , 2019. , p. 325
Series
Avhandlingsserie inom området Människan i välfärdssamhället, ISSN 2003-3699 ; 1
Keywords [en]
autonomy; child in welfare society; children as patients; children’s rights; competence; health law; integrity; participation; patient law; patient organizations; welfare law; voice
National Category
Social Sciences Interdisciplinary
Research subject
Social välfärd med inriktning mot civilsamhället
Identifiers
URN: urn:nbn:se:esh:diva-7873Libris ID: kwj7jw78hn2qw5xhISBN: 978-91-985808-1-5 (print)OAI: oai:DiVA.org:esh-7873DiVA, id: diva2:1377525
Public defence
2020-01-17, Aulan, Campus Ersta, Stigbergsgatan 30, Stockholm, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2019-12-12 Created: 2019-12-12 Last updated: 2020-01-17Bibliographically approved

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Citation style
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