Trial lecture - time and place
Place: Auditorium 2, Helga Engs hus
Time: 10:00 - 10:45
Title: Explore the possibilities and pitfalls involved in bringing together interdisciplinary ideas to study the boundaries between illness and disability
Public Defence
Place: Auditorium 2, Helga Engs hus
Time: 12:00 -
Evaluation committee
- 1st opponent: Professor Janice McLaughlin, Newcastle University, UK
- 2nd opponent: Senior Researcher Jeanette B. L. Knox, University of Copenhagen, Danmark
- Chair of committee: Associate Professor Magnar Ødegård, Department of Special Needs Education, University of Oslo, Norway
Chair of defence
- Professor Thormod Idsøe, Department of Special Needs Education, University of Oslo, Norway
Supervisors
- Professor Jan Grue, Department of Sociology and Human Geography, University of Oslo, Norway
- Professor Hilde Bondevik, Department of Public Health and Interdisciplinary Health Sciences, University of Oslo, Norway
- Professor Luca Tateo, Department of Special Needs Education, University of Oslo, Norway
Summary
A majority of children, adolescents, and young adults diagnosed with cancer experience long-term remission, where all signs and symptoms of their initial diseases are gone. While most of these young cancer survivors will grow up and hopefully live long lives, although we know that cancer can hold a lingering presence, we have limited knowledge of how cancer survival impacts their everyday lives. Through exploratory, in-depth qualitative inquiry, this thesis draws on the experiences of young cancer survivors to gain new insights into their lives.
The study was guided by the overarching research question: What constitutes the narratives and lived experiences of young adult cancer survivors? The question was explored by means of three qualitative methodologies and data sets: a meta-ethnographic review of previously published qualitative interview studies, an autoethnographic inquiry into my personal experiences of being a young cancer survivor, and a constructivist grounded theory study based on qualitative interviews with 11 Norwegian young adult cancer survivors. In this, illness narrative, disability studies, and cripistemologies served as influential theoretical foundations.
This thesis consists of three papers. The first paper, through a meta-ethnographical review, provides an overview of the field. It synthesizes experiences voiced by young cancer survivors in research settings and discusses identified narrative tendencies. A key finding of this study was that surviving cancer while young comprises complex experiences yet also presents as invisible, hard, and lasting struggle and a distinct way of being in the world.
The second paper, utilizing evocative autoethnography, delves into my own illness narrative, and elaborates on the tensions between the expectations of growing up and being ill. The endpoint for this exploration was set by suggesting theoretical expansion and proposing a fresh narrative resource to better understand the situation of young cancer survivors—the moratorium narrative. In this study, a key finding and prompt for future research was found by recognizing how growing up while also being ill requires their own strains of thought.
The third paper, based on semi-structured and unstructured interviews with 11 Norwegian young adult cancer survivors, generates a new model and explanation of young cancer survivors' everyday experiences. A key finding in this study concerns how the young cancer survivors described their everyday lives as demanding too much of them (sometimes more IV than they felt they could handle). In their everyday lives, four actions were described as crucial to their survival: Pacing, exerting, deceiving, and crashing. These activities made visible a vicious cycle of continuous efforts and struggles, and the interconnectedness of the young cancer survivors' experiences, actions, and struggles.
The thesis provides new insights into the field of young cancer survivorship by making
visible three conundrums of surviving cancer while being young. These conundrums center on the complications of being young, the contradictions of (non-)disclosure, and survival as experiencing everyday life as living in a tight spot. By making visible both practical and theoretical issues, these conundrums generate prompts for future research by calling for various disciplines, fresh perspectives, as well as the young cancer survivors themselves.