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  • 1.
    Holmqvist, Anna
    Ersta Sköndal Bräcke University College, Department of Social Sciences.
    Integritet på undantag?: En studie av barns röst i patientlagen och patientorganisationer2019Doctoral 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.

  • 2.
    Weber Falk, Megan
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Development and Evaluation of the Grief and Communication Family Support Intervention for Parentally Bereaved Families in Sweden2020Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Each year in Sweden, approximately 6,900 children will have a parent diagnosedwith cancer. Of all the children in Sweden born between 1990–1992, 5.6% havea parent with cancer and 1.1% of them have already had a parent die fromcancer. Bereavement support is an important component in palliative care,which aims to alleviate the physical, psychological, and spiritual suffering ofpatients and their family members. Several, but not all families participating inthe studies in this thesis came from a palliative care setting. Earlier research hasshown that parentally bereaved children often experience psychologicalproblems, physical problems, reduced self-esteem, difficulties communicating,school and behavioral problems, and/or complicated grief, with approximately10% of parentally bereaved children experiencing some type of clinicallysignificant psychological difficulty. Moreover, a child’s response to a parent’sdeath is often mediated by how their surviving parent responds to the loss. Still,support for bereaved children and families is limited in Sweden. The overall aimof this research project was to explore and describe psychological health, grief,and family communication among parentally bereaved children and survivingparents and to develop and evaluate a supportive family intervention. Fourstudies were conducted including an interview study exploring familycommunication in parentally bereaved families, a questionnaire study examiningassociations between family communication and psychological health inparentally bereaved children and adolescents, and the adaptation and evaluationof the Grief and Communication Family Support Intervention. Results fromthese four studies indicated that communication may be an important factor foradjustment following the death of a parent. Specifically, communication in someparentally bereaved families may involve conflict, which may in turn affect childand adolescent psychological health. Results from testing the Grief andCommunication Family Support Intervention indicate that it may improvefamily communication and relationships. Testing the Grief and CommunicationFamily Support Intervention with larger, more diverse samples is necessary toconfirm these results. The results imply that helping families find ways to adjustand adapt in healthy ways following the death of a parent, potentially throughthe Grief and Communication Family Support Intervention, is likely to improvepsychological health and communication among bereaved family members.Keywords:

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