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 growing incidence of chronic diseases and an ageing population, worldwide as well as in Greenland, call for an intensified focus on health promotion and rehabilitation. However, research shows that the existing disease-oriented healthcare system is not geared to manage the psychosocial problems of chronically ill or disabled citizens. The problem is related to the prevailing biomedical institutional structures where expert- and professional knowledge trumps the knowledge and perspectives of the users of the institutions. Speaking about health in the broad sense of WHO, there is a need for an intensified focus on wellbeing, not only physical health. The chapter presents the visions for an ongoing research project in Sermersooq Municipality.

The research aims at developing knowledge about the citizens’ everyday lives with illness or disabilities, their cultural values and perspectives. Involving this kind of knowledge in professional practice requires the professionals’ reflection on means and ends in a welfare institution like home care. Welfare-professional contributions are meant to support citizen participation in social living. Therefore, professionals must learn about citizens’ social and cultural conditions for managing their lives.

Furthermore, the project aims at revealing and describing the conditions for professional practice as a contribution to the professionals’ abilities to analyze their practice.

The material is developed through participant observations in the municipality and the citizens’ homes, and qualitative interviews with citizens, care personnel, therapists, and leaders on different levels.

The expected outcome is a set of tools for professional practice reflection following the principles described above.

Ligesom i Europa og andre dele af den vestlige verden er brugerinddragelse kommet på dagsordenen i det grønlandske sundhedsvæsen. Det kræver, at den grønlandske sundhedsforskning suppleres med humanistiske tilgange, som kan udforske patientperspektiver. Humanistisk sundhedsforskning rummer forskellige teoretiske tilgange. Artiklen diskuterer en fænomenologisk tilgang, som er udbredt i humanistisk sundhedsforskning, og dens muligheder og begrænsninger i forhold til at inddrage patientperspektiver som rationel viden og patienter som subjekter for deres eget liv. Diskussionen relateres til et grønlandsk forskningsprojekt med en kritisk psykologisk tilgang, og hvad tilgangen kan tilføre nøglebegreber i humanistisk sundhedsforskning som kontekst, situation, forståelse og etik. Samtidig peges på udviklingsmuligheder i praksis.

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.

Rapporten formidler resultaterne af en undersøgelse af hverdagsrehabilitering i Kommuneqarfik Sermersooq, Forvaltningen for Arbejdsmarked og Velfærd, Ældreområdet og Voksenomsorgsservice. Hverdagsrehabiliteringskonceptet er overtaget fra Danmark, og som i Danmark er praksis udtryk for en instrumentel og fragmenteret tilgang til støtten til ældre og kronisk syge, dvs et ensidigt fokus på fysisk træning og ADL. Dette fokus er dikteret af økonomiske overvejelser. Indsigten i borgernes perspektiver på livet som ældre/kronisk syg viser, at mål for støtten må forholde sig til ældres behov og ønsker i forhold til et meningsfuldt liv i fællesskab med andre. Hjemmehjælpergruppen, som skal være den bærende kraft i hverdagsrehabilitering, har gode muligheder for at inddrage borgernes perspektiver i indsatserne, men det kræver en professionalisering af hjemmehjælpernes opsøgen af borgernes perspektiver, og det kræver et opgør med en hierarkisk vidensopfattelse blandt de forskellige faggrupper i hjemmeplejen. Ift et udbredt problem blandt ældre/kronisk syge, nemlig ensomhed og perspektivløshed, diskuteres muligheder for relevante og meningsfulde aktiviteter, der muliggør ældres deltagelse som synlige og bidragende medlemmer af lokalsamfundet (ikke publiceret).