Publications

Various kinds of user and patient involvement are spreading in healthcare in most Western countries. The purpose of this study is to critically assess the actual conditions for patients’ involvement in healthcare practice in Greenland and to point to possibilities for development. Patients’ perspectives on their own conduct of everyday life with illness and their possibilities for participation when hospitalized are examined in relation to the conditions in a hospital setting dominated by biomedical practice. On a theoretical level, it is argued that the concept of ‘participation’ is preferable to the concept ‘involvement’ in healthcare. The study shows that there are several interconnected areas for development: the structural frames of hospital practice, including professionals’ possibilities for handling patient participation, and the agency of the patients conducting their everyday lives when hospitalized. Consequences of the biomedical hegemony are discussed in relation to WHO´s broader approach to disease, illness and health and the still existing postcolonial traces of power and hierarchy. Finally it is argued that patient participation during hospitalization will promote the patients´ conduct of everyday life, the cultural knowledge of the professionals, and the democratization of the healthcare sector. Such changes might be connected to a more encompassing democratic societal development – in Greenland as well as globally.

The background of the study reported in this chapter was the growing number of chronically ill patients. The purpose was to explore patients’ perspectives on life with chronic illness and how it relates to healthcare practice. The research was conducted as an ethnographic field study. A conclusion of the study is that the disease-oriented healthcare system is not geared to deal with rehabilitation because of a narrow focus on disease and treatment, and the exclusion of patients’ knowledge. However, knowledge about patients’ everyday life and perspectives hold potentials for rehabilitative and health promotional professional interventions.

The concept of patient involvement is ambiguous and contested in the healthcare systems in Western Europe and North America. Current research indicates that patients only feel moderately involved in their treatment and care. This article builds on a study of chronically ill patients’ perspectives on healthcare practice in Greenland. It discusses the significance of including in healthcare practice knowledge of patients’ everyday lives with illness and their own views on their situations. Research was qualitative and ethnographic. Participants were followed with participant observations and qualitative interviews for 2.5 years during hospital stay in the capital Nuuk and in their homes in towns and settlements during 2010–2013. Results show that patients are concerned about how to manage their life with illness on a daily basis. Their everyday life activities demonstrate the resources they have to live with illness. However, procedures for healthcare practice concentrate on treatment of the physical disease. Knowledge about psychosocial needs for care and rehabilitation tend to be excluded. The study points to potential for improving professional practice through healthcare professionals’ active investigation of patients’ everyday lives and values, integration of this knowledge into their professional practice and developing structures for this kind of involvement.