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.

The article reports some results from a study about an Everyday rehabilitation-project in Kommuneqarfik Sermersooq. Everyday rehabilitation in home care has spread rapidly in Scandinavia through the last few years and is part of a worldwide focus on ‘active ageing’ because of a growing share of people 65+ years. Many citizens benefit from rehabilitative services, but research shows that those in most need often are excluded from home care services because of a one-sided focus on ‘growth’. This can bring along conflicts between professionals and citizens and a lack of relevant support for citizens. The purpose of this study was to investigate citizens’ perspectives on a good life as old in Nuuk and how rehabilitation can support them in conducting a meaningful life from their own perspectives.

The study was conducted as an ethnographic field study. The methods were participant observations, qualitative interviews and document analysis.

The study shows that home care and rehabilitation services are concentrated on practical and instrumental help, disconnected from the citizens’ everyday life, their resources and values. This has a passivating and demotivating effect. Old people are proud of their achievements in life, they are actively managing their lives on a daily basis, and they have dreams for the future. But they do need professional assistance. Their everyday life-knowledge and perspectives have to be integrated in professional practice in order to improve the quality of home care services through cooperation between citizens and professionals. An action possibility is proposed, namely a certain approach to ‘life stories’ as an instrument to involve the citizens as participants in home care and rehabilitation.

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.