Background: Study feasibility and deliverability can benefit from involving patients and carers in the research process, known as patient and public involvement (PPI). There is less evidence on the experiences of patients and carers themselves and we require more information across a range of studies, health conditions and research stages.
Aims: This study explored how patients and carers in eight diagnostic research specialties have been involved in research, their motivations and the impact involvement had on them.
Method: 143 patients and carers across the Clinical Research Network (CRN) responded to an online semi-structured questionnaire (developed using participatory methodology). Quantitative and qualitative data were analysed.
Results: A range of benefits were reported, including providing a life focus and an improved relationship with illness. Less positive experiences regarding time and money and lack of acknowledgement were also reported, along with suggestions for improvement.
Conclusions: PPI confers many benefits on patients and carers which could increase PPI recruitment if made explicit. More involvement in study recruitment and dissemination would increase the effectiveness of PPI input. Involving a more varied socioeconomic demographic and at an earlier stage is vital. Financial support for lower earners and greater feedback following involvement should also be explored.
A very small proportion of patients were able to give consent before randomisation. Due to the high in-hospital mortality (60.6%), only around one third of the remaining patients could provide consent retrospectively. This study demonstrates difficulties experienced in obtaining consent from critically ill patients to participate in medical research and raises important issues about the ethical basis of the consent process in critical care.
Various clinical problems in recent years have been described under the general heading of 'functional analyses! The present paper considers the background to the notion of a functional analysis and some of the differences between functional analysis and more traditional approaches. The processes involved in producing such analyses of the origin and maintenance of clinical problems are outlined, using a clinical case as an illustration. It is suggested that, amongst the features highlighted by such analyses, feedback loops will often be apparent, and that these may provide particularly valuable targets for intervention. Moreover it appears that the use of such analyses transcends, at least to some extent, the type of problem or client (in being applicable to institutional or individual problems) and in particular that the use of functional analyses transcends theoretical biases of the clinician. In this respect it provides a potential common ground for workers of different orientations. Whilst functional analysis has been the subject of some philosophical criticism (see, for example, Hempel, 1%5), its use in clinical practice may be of great value and it would appear to be appropriate that functional analysis be examined closely, especially with respect to its role in clinical psychology.
Historical backgroundTwo distinct precursors may be identified of the application of functional analysis to psychology. The fiist of these is the use of the term in mathematics and physics. In mathematics functional analysis refers to a branch of analysis that uses algebraic and topological methods in the consideration of functions as elements of function spaces. This use relates tangentially to its use in psychology, its most important aspect for our present purposes being a concern with the way in which variables interrelate at a formal level. In the physical sciences, too, there has been a concern to sidestep issues of causality in favour of the notion of variables being 'functionally related: that is to say there exists some function which describes the relationship between two variables irrespective of speculation regarding the question of causality.In the biological/social sciences, on the other hand, functional analysis has referred to a rather different process. Here the role of a functional analysis is to describe or explain some phenomenon with respect to the function this serves for the system as a whole. Thus Merton (1957) refers to rain dances of the Hopi as fulfilling a (latent) function of '. . .reinforcing the group identity of providing a periodic occasion on which the scattered members of a group assemble to engage in a common activity! Here the concept of a functional analysis is close to the everyday use of the word 'function: in that a phenomenon is being observed and the question asked 'What use is it?, What function does it serve? ' We thus have the word function being used in two fairly distinct, though not unrelated ways to refer to the specification of variables to which a phenomenon is related (rain ...
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