'Like a fish on dry land': an explorative qualitative study into severe asthma and the impact of biologicals on patients' everyday life.

RESULTS: Findings show how our respondents experience a high burden of disease (breathlessness, fatigue, exacerbations, loss of family, friends and employment) and treatment (oral corticosteroids' side-effects, dependency, life-style changes). Treatment with biologicals is relatively new for respondents. They mention to be cautious in their embrace of biologicals and in expressing hope for the future. Respondents who react to treatment with biologicals experience relief of both the burden of disease and treatment. They aim to regain their social life and societal participation, a contrast to those for whom biologicals prove ineffective. Biologicals' burden of treatment is experienced as low and minor side-effects are mentioned by three respondents. Respondents appear relatively unconcerned about the lack of knowledge concerning the long-term effects of biologicals.Conclusions: Effective treatment with biologicals is generally experienced as a cautiously optimistic next step in a much longer and complex process of living with severe asthma. The practical lessons we draw point to managing patients' expectations and the need to pay attention to patients not eligible for treatment with biologicals.

Transforming clients into experts-by-experience: A pilot in client participation in Dutch long-term elderly care homes inspectorate supervision.

As experts-by-experience, clients are thought to give specific input for and legitimacy to regulatory work. In this paper we track a 2017 pilot by the Dutch Health and Youth Care Inspectorate that aimed to use experiential knowledge in risk regulation through engaging with clients of long-term elderly care homes. Through an ethnographic inquiry we evaluate the design of this pilot. We find how the pilot transforms selected clients into experts-by-experience through training and site visits. In this transformation, clients attempt, and fail, to bring to the fore their definitions of quality and safety, negating their potentially specific contributions. Paradoxically, in their attempts to expose valid new knowledge on the quality of care, the pilot constructs the experts-by-experience in such a way that this knowledge is unlikely to be opened up. Concurrently, we find that in their attempts to have their input seen as valid, experts-by-experience downplay the value of their experiential knowledge. Thus, we show how dominating, legitimated interpretations of (knowledge about) quality of care resonate in experimental regulatory practices that explicitly try to move beyond them, emphasizing the need for a pragmatic and reflexive engagement with clients in the supervision of long-term elderly care.