Marie Degett Kofod Svensson

Education

M.Sc in Anthropology, University of Copenhagen, 2014

Copenhagen School of Film & Photography, 2011-2012

Exchange Student, University of Amsterdam, 2009

B.Sc in Anthropology, University of Copenhagen, 2011

Professional and Teaching Experience

Project Employee, The Danish Heart Foundation, 2015

Student Assistant, National Institute for Public Health, 2013-2014

Teaching Assistant, Department of Anthropology, University of Copenhagen, 2013

Assistant Photography Teacher & Researcher, The AjA Project, San Diego, 2013

A childhood on the premise of the heart - CHD families’ experience and handling of congenital heart defect

In this industrial PhD project, I examine how families experience and handle having a child with congenital heart disease (CHD). The project focuses on families with children in the age between 0-17 with moderate and complex heart defects, and it includes perspectives from the entire family – both CHD children, parents and siblings. I am particularly interested in the daily lives of the families, but I also include perspectives from clinical settings and patient support activities where CHD families meet.

The project has four overall themes:

1. Treatment options & support initiatives, i.e. how the families experience and use the treatment and support initiatives offered by the Danish healthcare system, the social system and patient organizations.

2. Family dynamics & the family as illness management group, i.e. how the heart defect affect the family dynamics, particularly in terms of how the family functions as the daily managers of the child’s health and treatment.

3. Uncertainty & hope, i.e. what it means for the CHD children and their families to live with uncertainty for example in relation to future prognosis and the outcome of operations, but also their hopes for the development of new treatment options, stabilization of the illness etc.

4. Self-determination & involvement: i.e. how patient involvement and the degree of self-determination is experienced and negotiated when the patient is an underage child.

The project is a collaboration between the Department of Anthropology and The Danish Heart Foundation, and it is funded by The Children’s Heart Foundation and Innovation Fund Denmark.

Main supervisor: Ayo Wahlberg, Professor MSO, Department of Anthropology, University of Copenhagen

Company supervisor: Gunnar Gislason, Research Director at The Danish Heart foundation, Professor of Cardiology at University of Copenhagen, and Research Director at The Cardiovascular Research Centre at Gentofte University Hospital.

Company co-supervisor: Rikke Morthorst, project manager, The Danish Heart Foundation

External co-supervisor: Christian Vium, postdoc, School of Culture & Society - Department of Anthropology, Aarhus University