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Participatory research

A method for process consent with persons who have dementia

University of Ulster, Northern Ireland, University of Northumbria, UK and Royal College of Nursing Institute, UK

Consent theoretically threads through the whole qualitative research method, so getting this right can set the tone for person-centred relationships between researcher and participants. However, most attention has been given in the UK to cognitively biased informed consent and to consent taking place at the beginning of projects; and in North America to assent or the lack of objection. The method in this article is based on the premise that for persons with a dementia, informed consent becomes increasingly redundant and consequently exclusionary to them as persons. This article sets out and describes a method for consent that focuses on persons with dementia, traditionally excluded from consent and thus from research, and also refocuses on consent as a process that runs through the whole of a research project. It also suggests that use of this model can strengthen the assent process. Examples from two contrasting doctoral studies will be offered to illustrate the method in action. The first study investigates wandering in older persons with dementia living in a nursing home. The second study is a randomized control trial investigating an intervention for heel sores in older persons with dementia as patients on orthopaedic wards in a general hospital.

Key Words: assent • capacity • dementia • participation • process consent • qualitative research

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