Interview and observation guides used to collect data for doctoral dissertation: Virkelighetsforståelser og praksis – en kritisk diskursanalyse av tildelings- og tilretteleggingsprosessen for tjenester til hjemmeboende yngre personer med demens

This dataset contains guides and interview forms used to collect data for doctoral dissertation. These include, among others, guide for participant observation, participatory observation, individual interviews, focus group interview.  

Abstract (doctoral dissertation)

The background for this study is previous research suggesting that municipalities often fail to provide adequately differentiated health care services to home-dwelling persons with young-onset dementia, thus failing to meet their individual needs. This, however, stays in contrast with contemporary debate which is dominated by strong expectations of individual adaptions of health care services. The purpose of this study was therefore to empirically investigate the social practice that constitute the process of allocating and facilitating municipal health care services. By pointing out some possible connections between the actual practice and the broader social structures in which this practice is embedded, I have shed light on aspects of the established practice which may be perceived as unfair and unjust. 

The findings from this thesis are based on fieldwork in two municipal service allocation offices, day care centers for persons with young-onset dementia, as well as the dementia nursing services, analysis of application forms and relevant websites. I have interviewed a person with young-onset dementia who has just applied for services and followed the process of allocating and facilitating the service until that person experiences the allocated service. The empirical material is analysed with the inspiration from Fairclough's critical discourse analysis with "intertextual chain" as a central analytical concept. 

The study shows that in a context where the imperative to limit public expenditure is the dominating understanding of reality, legitimizing the work of demarcation becomes important. A main finding is that a cost/benefit discourse dominates the allocation and facilitation process. Within this discourse, the needs and wants of the recipients are modified in ways that keep services to a minimum level, albeit without compromising the idea of universal services. The study shows that this work of demarcation can lead to a shift towards welfare models other than the universalist model, and challenge equality work, without prior political discussions. Another important finding is that an unclear understanding of the category of persons with young-onset dementia may lead to a propensity to marginalise this group in a context where the cost/benefit discourse dominates. Furthermore, the study shows that a legal discourse is about to be established as a dominant understanding of reality. Within this understanding of reality, individual rights and requirements become important, as do concepts that refer to individuals, such as the concepts of autonomy and person-centredness. The study shows that too much focus on individuals and their capacity for independent decisions can veil the hegemonic notion of limiting public expenditure. The study therefore shows the capacity of the cost/benefit discourse, together with the legal discourse, to limit the ability of service allocation officers and health care personnel to influence health care services in a direction where the individuals are given real influence over their own health care services.