Journal of evaluation in clinical practice
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Healthcare research exploring the lived experiences of health care professionals from different disciplines, such as nursing, medicine, and allied health, has repeatedly highlighted many methodological challenges, especially in understanding the individual human experience within complex systems. In response, complexity theory and phenomenological approaches emerged and evolved in ways that potentially offered researchers frameworks to inform an understanding of the individual human experience. However, while these two theoretical approaches inform a method of inquiry, there is a gap in understanding the phenomenon of 'being' and how this is embodied within complex systems such as the healthcare system. ⋯ The authors propose that an integrated framework, of phenomenology and complexity theory, can provide a platform for deeper understandings of the experiences of health professionals and contribute to healthcare scholarship.
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A 'patient-oriented' research paradigm, also known as patient and public engagement, has infiltrated the field of health sciences and continues to spread. At first blush, it is difficult to reprove anything labelled 'patient-oriented'; however, the patient-oriented paradigm may easily become an ideological 'good', leading to unintended consequences that may well prove more detrimental than beneficial. While patient-oriented research has its roots in more radical forms of patient and public engagement, its recent instantiation betrays its roots and forecloses on more radical forms of engagement, such as critical participatory research. ⋯ By deconstructing the patient-oriented narrative we demonstrate how pre-existing power structures (biomedical, economic, etc.) shape the conduct of the approach and serve to depoliticize the truly participatory aspects of research. Rather than being modelled on the evidence-based movement or seen as its natural 'evolution', patient-oriented research should resist by affirming itself as a radical form that is both participatory and emancipatory.
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The overall aim of this paper is to provide practical insight into the way that professionals caring for a person with motor neurone disease (MND) can recognise, respect and respond to that person's temporality; that is, the person that they have been, that they are now and that they will be in the future. ⋯ We suggest MND has a significant impact on a person's lifeworld. The proposed person-centred care model focuses on understanding (interpreting) a person in a wider temporal frame and beyond the context of their illness. The expected collaborative outcomes are that: a person is acknowledged as more than a 'patient with MND' and that a professional is providing person-centred care based on individuality of the person, through a temporal lens. This requires a collaborative approach between the person, others and professionals. Such person-centred care, focused on individuality, may prevent a person experiencing life in crisis and suffering towards the end of life.
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Centred around the thesis that for those engaged in clinical practice there are two worlds present in parallel, this article defines the characteristics of the supposed second, qualitative world. Contrasting these characteristics to those of the world as seen in continuous metric dimensions of space and time, we derive the nature of the qualitative elements and their coherent interaction, as well as the rules governing these dynamic elements' interactions. ⋯ Following this theoretical process, two practical consequences are drawn. The first consists of an advanced model of biopsychosocial interaction, as extensively published throughout the years. The second presents the concept of quality-oriented self-aid groups open to all exposed to or working in care and healthcare. The corresponding training helps practitioners to consciously and deliberately move, perceive, and perform in the duplicity of worlds, the one the conventional quantifying, metric one, the other the mostly rationally unknown world emerging from qualifying interactive agency.
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Patient-oriented research (POR) is a trend that has emerged over several decades and is particularly prominent in Canada, the United States and the United Kingdom. It involves patient and other stakeholder participation in the planning, conduct and dissemination of biomedical and health services research and it can be seen as a form of public participation and engagement in activities that affect the lives and well-being of communities. Criticisms of POR revolve around its susceptibility to tokenistic treatment of patient participants and paternalistic dominance of the research agenda by professional researchers, academics and clinicians. ⋯ It will explore the interface between POR, community activism and community-based participatory research. The contextual importance of the COVID-19 pandemic experience is stressed. The commentary will particularly focus on the US-based Patient Centred Outcomes Research Institute, its origins within a movement to enhance emphasis on publicly funded comparative effectiveness research, and its more recent evolution in the direction of community empowerment in POR.