När kroppen sätter gränser : En studie om att leva med hjärtsvikt i medelåldern

Sammanfattning: The overall aim of the present thesis was to describe the meaning of living with heart failure as a middle-aged person. In particular, the relation between the persons’ life-situations and formal care was explored. An additional aim was to uncover the meaning of support as experienced by people living with heart failure in middle age. The study used a caring science perspective and a reflective lifeworld approach, founded on phenomenological philosophy. Interviews were used for data collection and data were analyzed using essence-seeking analysis. The thesis is based on four empirical studies and the results were synthesized into a general structure, presented in the thesis.The results of study I illuminate influences and changes to the life-situation that people living with heart failure in middle age can experience. The social world, i.e. intersubjective relationships, vocational situations, and formal care emerge as fundamental to the individuals, as well as the individuals’ own experiences of themselves and their body. The life-situation is frail and depicted by insecurity and uncertainty. The results of study II illuminate that people living with heart failure in middle age experience exposure and vulnerability in relation to formal care. While the context of formal care provides alleviation and medical treatments, the results at the same time revealed experiences of dependency and unclear participation. The results from studies III and IV clarify that support means to know that help is available concerning practical matters or flexibility at work. However, it also reveals that support means a sense of security or safety in relation to other people, such as friends, families, employees, and formal carers. Knowledge, and control are central aspects of the phenomenon of support in relation to heart failure.The phenomenon’s general structure illustrate that living with heart failure as a middle-aged person is depicted by ambiguity in relation to other persons, daily life and formal care. The general structure is intertwined with an altered experience of the body, and a life-situation in a borderland between health and illness. The phenomenon is illuminated by the meaning constituents: A borderland between health and illness, and A tension between what is supportive and what is not. The phenomenon’s outer horizon is understood as A changed body and a threat against life, meaning that the phenomenon stands out against a background of the limits which the body sets on the persons.The present study illustrates that support from others give people living with heart failure in middle age inner strength which they need if they are to adjust their life goals. However, the results also revealed that formal care at times is insufficient and the support which the patient’s need is forsaken. When people living with heart failure in middle age are to take on their own responsibilities for their health process they need information, knowledge and to be participating in care. Furthermore, formal carers need to focus more on the patient’s social roles and networks. A lifeworld-led perspective in formal care can unite a biomedical and a caring science perspective, and formal carers will be able to pay more attention to the patients’ changed life-situation rather than focusing the patient’s failing hearts.