Learning to live with diabetes - as experiencing an expanding life world

Sammanfattning: Introduction: Chronic illness, such as diabetes, results in a transition process involving a variety of changes in both bodily function and conditions for living, and requiring broad knowledge and understanding in order to meet new demands. The outcomes of a healthy transition are described as well-being and mastery, in contrast to vulnerability and dependency. Little is known about how time for experience contributes to the transition of living with a chronic illness. Aim: The overall aim of the thesis was to illuminate the transition of living with diabetes during the first three years after diagnosis, in order to reach an understanding of how better to create more person-centred care. Design: The study has a life world phenomenological approach with a longitudinal, descriptive and interpretive design. Thirteen participants were interviewed within two months after diagnosis and again after three years. A selected sample approach was used. For study I a qualitative inductive content analysis was used and for study II a phenomenological-hermeneutic method. Findings: In study I four themes were found; ‘taken over by a new reality,’ ‘the body plays a role in life’, ‘different ways of learning’ and ‘the health care service as a necessary partner’ and in study II one overall theme; Experience for understanding the individual meaning of freedom and control in living with diabetes and two themes ´Solving the life-puzzle – a delicate balance to create the desired life´ and ´The need for being in control of your own health´. Discussion: For a healthy transition when living with diabetes, the ability to interact with others in order to share their experiences was crucial and contributed towards participants understanding themselves and their life world. In order to be able to interact, participants had to understand their body as a subject, interlaced with the self and the life, the lived body. Being able to listen to the body and interpret body cues and circumstantial information also contributed to a healthy transition. When the body with diabetes was objectified, a struggle ensued where incompatible needs were experienced and contradictory information created insecurity. The person then preferred not to interact with others but to be dependent on advice and information from the health care service. Conclusion: This study showed that duration of illness was not of importance for the understanding of living with diabetes. Three years after being diagnosed, living with diabetes meant an experience both of overall balance in one’s existence and of a daily struggle. Health care personnel are open to the unique experience of the person living with diabetes as well as to where the person is in the transition. Patient education in a group setting, with the goal of sharing experiences in a learning process, will be meaningful only if the person has the ability to interact with others.

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