Marie Kofod Svensson
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