TANJA EDVARDSSON
Consequences of brain tumours from the perspective
of the patients and of their next of kin
Studies from The Swedish Institute for Disability Research 25
Faculty of Medicine, Science and Technology, Department of Health Sciences Örebro University 2008
Institutet för handikappvetenskap, IHV
issn 1650-1128 isbn 978-91-7668-572-3
tanja edvardsson, who has an MSc in Psycho-logy and is a registered psychologist, has many years’ experience of working with people who have some form of functional disability. For the past 14 years she has been working for Örebro County Council in adult habilitation. The thesis presented here was completed within the frame-work of the Department of Disability Studies, Örebro University, Sweden.
The thesis concerns how a brain tumour affects the lives of both the patient and the next of kin. Adult patients and their next of kin described how they felt about the beginnings of the illness and the symptoms, including the problems that arose and the changes that had to be made in everyday life. Central themes of the thesis are quality of life, the encounter with care staff and coping with the diffi culties caused by the illness. It emerged that the onset of illness was a process involving great fear and insecurity, accompanied by a repeated need to seek professional help. The encounter with care staff was sometimes positive, sometimes negative. In some cases the tumour led to major functional disability, in other cases hardly any such disability. Coping took a variety of forms.
The next of kin were deeply involved in the sick person’s condition and needs. They were under great strain, especially in the early phase of the illness. The fact that the patient was the focus of the care staff’s attention meant that many of the next of kin felt forgotten, felt they had no support. Despite the diffi culties, both the sick person and the next of kin could in most cases maintain strength and hope, as was manifested in their assessment of their quality of life.
2008
