Hvad er ledelse af brugerinddragelse? En gennemgang af mål og tre individuelle brugerinddragelsesmodeller

Brugerinddragelse i det danske sundhedsvæsen står højt på den politiske dagsorden, men det er stadig en udfordring at implementere visionen i klinisk praksis. Ledelse af brugerinddragelse bliver aktuelt udpeget som en central nøgle til at føre visionen ud i livet. Samtidig er der kun relativt lidt forskning om ledelse af brugerinddragelse i sundhedsvæsenet og på det empiriske plan er det uklart, hvad det er lederne skal implementere. Artiklen identificerer syv forskellige italesatte mål med brugerinddragelse, hvoraf nogle potentielt kan være i konflikt med hinanden. Herudover peges der på, at brugerinddragelse skal implementeres i en verden, hvor der allerede er en række andre mål tilstede. En central ledelsesudfordring er derfor, at nogle af målene med brugerinddragelse forudsætter nye måder at organisere ikke bare arbejdet og kompetencer på, men også relationer til patienter og pårørende. En væsentlig opgave i ledelse af brugerinddragelse vil derfor være at fremme en gentænkning af de etablerede roller og identiteter i sundhedsvæsenet. Artiklen opstiller tre forskellige inddragelsesmodeller, der hver organiserer relationer mellem sundhedsprofessionelle og sundhedsvæsenets brugere på forskellige måder.Artiklen bygger dels på en gennemgang af dansk og international litteratur og policy dokumenter, dels på en empirisk best practice undersøgelse af ledelse af brugerinddragelse, som i perioden 2012-2013 blev gennemført på tre danske hospitalsafdelinger

Postnatal consultations with an obstetrician after critical perinatal events:a qualitative study of what women and their partners experience

Objective The objective of this study was to explore women’s and their partners’ experiences with attending postnatal consultations with an obstetrician after critical perinatal events.Design Qualitative interview study. We did semi-structured individual narrative interviews exploring the lived experiences. Interviews were analysed using a phenomenological approach and the thematic analysis was validated by a transdisciplinary group of anthropologists, obstetricians and a midwife.Setting Department of obstetrics at a large hospital in Denmark.Participants We did a qualitative study with 17 participants (10 women and 7 partners) who had experienced critical perinatal events.Results Five major themes were identified: (1) a need to gain understanding and make sense of the critical perinatal events, (2) a need for relational continuity, (3) the importance of discussing emotional effects as well as physical aspects of occurred events, (4) preparing for future pregnancies and (5) closure of the story.Most of the participants emphasised the importance of knowing the obstetrician undertaking the postnatal consultation. The majority of the participants described a need to discuss the emotional effects of the experience as well as the physical aspects of occurred events. The postnatal consultation served as an approach to obtain a positive closure of their birth story and to feel confident about potential future pregnancies.Conclusions This interview-based study suggests that postnatal consultation with an obstetrician might be an important tool for women and their partners in understanding the course of events during the critical birth experience and in processing it and preparing for future pregnancies. It appears to be important to assign an obstetrician whom they already know and to encourage them to discuss not only physical aspects of what happened but also the emotional effects of the experience

Making Sense of New Disease Categories: Naming, Spatialising, and Serialising in Genomic Medicine

Intrigued by geneticists’ framing of new gene names as somehow devoid of meaning, I set out to explore how patients and families make sense of naming practices in the field of genomic medicine. The aim for ever-more precise disease categorisation has resulted in names for medical conditions that are more akin to car-licence plates, such as DPF2 and G246A. Conducting fieldwork in Denmark, I followed the introduction of personalised medicine—that is the aim to tailor prevention, diagnosis, and treatment to the individual based on genomic and other data—in the field of rare diseases and diabetes. Engaging with theories of naming, spatialisation and serialisation, I suggest that it is exactly because of their unsettled meaning and presupposed lack of history that new gene names provide patients extra room for creative identity work. I argue that some patients and families use the new genetic disease labels to escape unwanted moral regimes, relocating disease aetiology from a moralised landscape to a ‘molecularised’ genetic one. I discuss how practices of serialisation enable patients to feel recognised as unique persons. In conclusion, I suggest that while the new genetic names may not stigmatise, they do change the patients’ idea of who they are in surprising ways, some of which the geneticists had not anticipated