The Perspectives of People with Dementia: Research Methods and Motivations

By Heather Wilkinson | Go to book overview
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Chapter Four

Including the perspectives of
older people in institutional care
during the consent process

Gill Hubbard, Murna Downs and Susan Tester


Introduction

Since the 1980s, there has been a burgeoning commitment to develop understandings of quality of life and quality of care by directly exploring the perspectives and subjective experiences of older people in institutional care settings, many of whom will have dementia (Barnes and Bennett 1998; Browne, McGee and O'Boyle 1997a, 1997b; Coen et al. 1993; Forbes 1996; Gubrium 1993, 1995; Mitchell and Koch 1997; Raynes 1998; Spalding and Frank 1985; Splann Krothe 1997). This relatively new concern has led to researchers exploring ways in which they can actively place older people at the heart of the research endeavour and listen to their voice throughout each stage of the investigation (Reed and Payton 1996). The consent procedure is one stage of the research process where there is considerable discussion over the extent to which it is possible for the voice of the older person in institutional care to be heard.

Research ethics require that each person who is participating in the investigation give 'informed consent'. Within medical and social research discourses, informed consent has the same meaning, that is: (1) the person being asked to consent is competent; (2) consent is voluntary and free from coercion; (3) research participants are fully informed about the aims of the

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