The two faces of user involvement: Everyday life and local context

In most developed countries, healthcare systems are increasingly faced with political demands to involve users in the planning and development of their services. This article reports findings from an ethnographic fieldwork that investigated an inter-organizational project involving user representation. The project was set up to develop an educational programme for people with rheumatoid arthritis (RA). By investigating user representatives’ experiences, our aim was to bring to light more general determinants and conditions of user involvement in health services. Drawing on an analytical framework within everyday life sociology, the analysis explored the dual concept of “conditions and conditionality”, metaphorically described in this article as “the two faces of user involvement”. From one perspective, everyday life experiences – living with RA, encounters with the health system and professional identities and work life – conditioned user representatives’ participation in the project. From another perspective, the local institutional context and interactions within the project framework conditioned the way in which users are involved. The ways in which these conditions changed over time are described, in relation to the specific spatial, temporal and social developments in both the everyday lives of the user representatives and in the local project

Experiences with recruitment of marginalized groups in a Danish health promotion program:a document evaluation study

BACKGROUND:Studies have found that marginalized groups living in deprived neighborhoods are less likely to participate in health programs compared to the majority of society. This study evaluates recruitment approaches conducted during a national government-funded project in 12 deprived neighborhoods across Denmark between 2010 and 2014. The aim of this study was to understand how recruitment approaches could promote participation in health programs within deprived neighborhoods to reach marginalized groups. METHOD:Documents from all 12 of the included municipalities were collected to conduct a document evaluation. The collected documents consisted of 1,500 pages of written material with 12 project descriptions, three midterm and 10 final evaluations. The collected data were analyzed through a qualitative content analysis. RESULTS:The results are based on the fact that only 10 municipalities have developed evaluations related to recruitment, and only three evaluations provided a description of which marginalized groups were recruited. Challenges related to recruitment consist of difficulties involving the target group, including general distrust, language barriers and a lack of ability to cope with new situations and strangers. Additional geographical challenges emerged, especially in rural areas. Positive experiences with recruitment approaches were mainly related to relationship building and trust building, especially through face-to-face contact and the project employees' presence in the neighborhood. Additionally, adjusting some of the interventions and the recruitment strategy increased participation. CONCLUSION:This study found that relation and trust between the residents and the project employees is an important factor in the recruitment of marginalized groups in deprived neighborhoods as well as adjusting the health interventions or recruitment strategy to the target groups. In future research, it is necessary to examine which recruitment approaches are effective under which circumstances to increase participation among marginalized groups

The two faces of user involvement: Everyday life and local context

In most developed countries, healthcare systems are increasingly faced with political demands to involve users in the planning and development of their services. This article reports findings from an ethnographic fieldwork that investigated an inter-organizational project involving user representation. The project was set up to develop an educational programme for people with rheumatoid arthritis (RA). By investigating user representatives’ experiences, our aim was to bring to light more general determinants and conditions of user involvement in health services. Drawing on an analytical framework within everyday life sociology, the analysis explored the dual concept of “conditions and conditionality”, metaphorically described in this article as “the two faces of user involvement”. From one perspective, everyday life experiences – living with RA, encounters with the health system and professional identities and work life – conditioned user representatives’ participation in the project. From another perspective, the local institutional context and interactions within the project framework conditioned the way in which users are involved. The ways in which these conditions changed over time are described, in relation to the specific spatial, temporal and social developments in both the everyday lives of the user representatives and in the local project

Participating in patient education:a status passage in life?

The paper builds on previous ethnographic research in Denmark focusing on the significance of participating in a locally developed patient education programme for everyday life (Kristiansen et.al. 2015). It presents a secondary analysis. Group based patient education can be understood as a health promoting initiative. It is set up to regularize and help people manage the status passage from being a normal person to becoming a person living with chronic illness and to support them in accepting and learning to live with this identity transition. The theory of status passage and the concept of turning point is applied in order to illustrate two central status passages taking place at the locally developed patient education programme: 1) The status passage from novice to an experienced person with chronic illness, and 2) The transformation from adolescence to adulthood living with a chronic illness. Related to both status passages we analyse how the central properties of status passage are at play and how they are shaped by the social interactions among the different agents: participants, lay experts and health professionals.We discuss how the theory of status passage might further enrich empirical studies within the field of patient education and how it can enhance our understanding of the social practices at play and the identity transitions occurring as a result of the chronic illness itself and the participation at the programme. Further we reflect on potential practical implications of our findings. <br/