How do people describe their health? How do their descriptions relate to public definitions? This article focuses on adult attention deficit hyperactivity disorder (ADHD). We look at Dutch adults who adopt the ADHD label and ask: which discourses structure their descriptions of ADHD? How do these relate to the dominant public discourse on ADHD? Do people use, for example, neurobiological explanations of ADHD? The research makes use of Q‐methodology, which combines a discursive relational approach with factor analysis. We examine five different personal discourses that partly differ from the public discourse. People borrow neurobiological, psychological, sociological and even holistic arguments from public discourse to come up with a distinct set of discourses. Neurobiology resonates among adults with ADHD but does not dominate their thinking. Contrary to our expectation, this supports reflexivity instead of discipline theory.
Introduction: Experience-based codesign (EBCD) is a valuable tool for participatory quality improvement. However, the EBCD process needs to be adjusted to make it suitable for long-term care. The focus of the improvement process needs to shift to the care relationship, as this is an important part of the quality of care in these settings. Furthermore, the EBCD process needs to be made more accessible to vulnerable populations.Methods: Through a participatory research approach, EBCD was adjusted to longterm care. The research was conducted in two care organisations: one supporting people with serious mental illness and intellectual disabilities in independent living and one providing homecare services for older persons.
Results:The participatory research resulted in the development of 'Ask us!'-a method for critical reflective codesign. The research furthermore provided valuable lessons for participatory projects with vulnerable clients. A common problem with participatory research in long-term care is ensuring the involvement of clients and informal carers. We report on various strategies developed to include experiences of a diverse set of services users, such as combining interviews with participant observation, photo-voice and involving experts-by-experiences as co-ethnographers. In close collaboration with an inclusive theatre company, these experiences were translated into 42 short videos on complex situations in the care relationship from the perspective of clients, professionals or informal carers. These videos instigate critical reflection and accelerate the participatory quality improvement process. Moreover, practical tools were developed to overcome barriers regarding the involvement of people with disabilities. These include the use of photo-elicitation to enable participation of clients with disabilities in heterogeneous group discussions and involving experts-by-experience as proxies to share experiences of clients for whom participation in the 'Ask us' method remains inaccessible.
Mental health professionals are expected to stimulate the participation of service users with serious mental illness. This not only changes what is expected from service users and professionals, it also changes the values underlying their relationship. The value of autonomy becomes more important as a result. This raises potential ethical dilemmas. This paper reports the findings of a thematic synthesis of 28 papers on the views of service users, professionals and family members on the care relationship in inpatient, outpatient and community services for people with serious mental illness. It puts forward various perspectives on participation of service users, foregrounding differing values, which in turn can lead to ethical dilemmas for professionals. The key implications for mental health professionals and future research are discussed.
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