Patient participation : what it is and what it is not

In general, patient participation is regarded as being informed and partaking in decision making regarding one’s care and treatment. This interpretation is common in legislation throughout the Western world and corresponding documents guiding health care professionals, as well as in scientific studies. Even though this understanding of the word participation can be traced to a growing emphasis on individuals’ autonomy in society and to certain dictionary defi nitions, there are other ways of understanding participation from a semantic point of view, and no trace of patients’ descriptions of what it is to participate can be found in these definitions. Hence, the aim of this dissertation was to understand patients’ experience of the phenomenon of patient participation. An additional aim was to understand patients’ experience of non-participation and to describe the conditions for patient participation and non-participation, in order to understand the prerequisites for patient participation. The dissertation comprises four papers. The philosophical ideas of Ricoeur provided a basis for the studies: how communication can present ways to understand and explain experiences of phenomena through phenomenological hermeneutics. The first and second studies involved a group of patients living with chronic heart failure. For the fi rst study, 10 patients were interviewed, with a narrative approach, about their experience of participation and non-participation, as defi ned by the participants. For the second study, 11 visits by three patients at a nurse-led outpatient clinic were observed, and consecutive interviews were performed with the patients and the nurses, investigating what they experience as patient participation and non-participation. A triangulation of data was performed to analyse the occurrence of the phenomena in the observed visits. For paper 3 and 4, a questionnaire was developed and distributed among a diverse group of people who had recent experience of being patients. The questionnaire comprised respondent’s description of what patient participation is, using items based on findings in Study 1, along with open-ended questions for additional aspects and general issues regarding situations in which the respondent had experienced patient participation and/or non-participation. The findings show additional aspects to patient participation: patient participation is being provided with information and knowledge in order for one to comprehend one’s body, disease, and treatment and to be able to take self-care actions based on the context and one’s values. Participation was also found to include providing the information and knowledge one has about the experience of illness and symptoms and of one’s situation. Participation occurs when being listened to and being recognised as an individual and a partner in the health care team. Non-participation, on the other hand, occurs when one is regarded as a symptom, a problem to be solved. To avoid non-participation, the information provided needs to be based on the individual’s need and with recognition of the patient’s knowledge and context. In conclusion, patient participation needs to be reconsidered in health care regulations and in clinical settings: patients’ defi nitions of participation, found to be close to the dictionaries’ description of sharing, should be recognised and opportunities provided for sharing knowledge and experience in two-way-communication.

Rule versus interaction function : evaluating regional aggregations of commuting flows in Sweden

The aim of this paper is to evaluate the performance of two divergent methods for delineating commuting regions, also called labour market areas, in a situation that the base spatial units differ largely in size as a result of an irregular population distribution. Commuting patterns in Sweden have been analyzed with geographical information system technology by delineating commuting regions using two regionalization methods. One, a rule-based method, uses one-way commuting flows to delineate local labour market areas in a top-down procedure based on the selection of predefined employment centres. The other method, the interaction-based Intramax analysis, uses two-way flows in a bottom-up procedure based on numerical taxonomy principles. A comparison of these methods will expose a number of strengths and weaknesses. For both methods, the same data source has been used. The performance of both methods has been evaluated for the country as a whole using resident employed population, self-containment levels and job ratios for criteria. A more detailed evaluation has been done in the Goteborg metropolitan area by comparing regional patterns with the commuting fields of a number of urban centres in this area. It is concluded that both methods could benefit from the inclusion of additional control measures to identify improper allocations of municipalities.

Tourism and Arctic Observation Systems : exploring the relationships

The Arctic is affected by global environmental change and also by diverse interests from many economic sectors and industries. Over the last decade, various actors have attempted to explore the options for setting up integrated and comprehensive trans-boundary systems for monitoring and observing these impacts. These Arctic Observation Systems (AOS) contribute to the planning, implementation, monitoring and evaluation of environmental change and responsible social and economic development in the Arctic. The aim of this article is to identify the two-way relationship between AOS and tourism. On the one hand, tourism activities account for diverse changes across a broad spectrum of impact fields. On the other hand, due to its multiple and diverse agents and far-reaching activities, tourism is also well-positioned to collect observational data and participate as an actor in monitoring activities. To accomplish our goals, we provide an inventory of tourism-embedded issues and concerns of interest to AOS from a range of destinations in the circumpolar Arctic region, including Alaska, Arctic Canada, Iceland, Svalbard, the mainland European Arctic and Russia. The article also draws comparisons with the situation in Antarctica. On the basis of a collective analysis provided by members of the International Polar Tourism Research Network from across the polar regions, we conclude that the potential role for tourism in the development and implementation of AOS is significant and has been overlooked.