Taking charge of one's life : Challenges for learning in long-term illness

A starting point for this thesis is that patients’ learning has not received sufficient attention and thus has not featured in the study programmes in the field of caring. Focus has instead been placed on patients being given information and advice about their illness and treatment, advice that they are then expected to comply with. Too little attention has been paid to the individual who lives with his/her illness and who should be considered to have significant experiences. The overall aim has been to analyze and describe the phenomenon of learning to live with long-term illness as well as to develop a didactic model that can help carers to support patients’ learning processes. The theoretical perspective in the thesis is lifeworld theory, which permeates ontological, epistemological and methodological standpoints and also the view on learning. The design and carrying out of the research is based on a reflective lifeworld approach. The empirical study consists of interviews with people who live with different types of long-term illnesses. The learning that follows life with a long-term illness is generated in such a way as to respond to the will to live the well-known everyday life. A greater understanding of the empirical results has been achieved by a lifeworld philosophical elucidation, with a particular focus on learning turning points and the importance of reflection. Based on the empirical results, the lifeworld philosophical elucidation and the caring science lifeworld didactics a didactic model has been formulated. This model is entitled: The challenge – to take charge of one’s life with long-term illness. The model contains four theses: 1) Confronting one’s life situation and challenging to make a change, 2) Positioning oneself at a distance when creating a new whole, 3) Developing self-consciousness and taking responsibility, 4) Making learning visible with the aim of providing development and balance in life. The results in the thesis show that a genuine learning is something that differs from the learning of information and that the learning must be supported at an existential level based on the sufferer’s situation and for a long period of time