Interviewing people with dementia in hospital: recommendations for researchers

Abstract

The suggestions outlined here are relevant to a variety of people who are in contact with people with dementia in clinical settings. Developing the skills of researchers in this area needs a commitment by organisations to promote the inclusion of the perceptions of people with dementia in research and in discussions about their own care.

Safe and Inclusive Research Practices for Qualitative Research Involving People with Dementia: A Review of Key Issues and Strategies

“…In response, the body of qualitative research involving people with dementia has grown, and the methods used to engage with people with dementia have expanded from observation and interviews to include a wider range of methods and techniques (Bartlett, 2012;Tanner, 2012;Wiersma, 2011). This work provides compelling evidence that many people with dementia can actively participate in qualitative research and provide rich data on their experiences (Beuscher & Grando, 2009;Digby, Lee, & Williams, 2016;Hellstrom et al, 2007;Hubbard, Downs, & Tester, 2003;McKeown, Clarke, Ingleton, & Repper, 2010;Murphy, Jordan, Hunter, Cooney, & Casey, 2015;Pratt & Wilkinson, 2001;Wilkinson, 2002;Wilkinson & Milne, 2003). The effective inclusion of people with dementia in qualitative research, however, presents complex ethical and methodological issues that require critical examination and innovative solutions.…”

“…In her paper, 'Nobody's ever asked how I felt', Pratt (2002) applies the concept of safe practice to research involving people with dementia and argues that researchers should strive to create a safe research context. Other dementia scholars have also stressed the need to ensure safe research practices (Digby et al, 2016;Hellstrom et al, 2007;Wilkinson, 2002) and many have published work that reflects on their approaches to promoting safety and wellbeing, the challenges they have encountered, and possible solutions to these issues (Bartlett & Martin, 2002;Beuscher & Grando, 2009;Clarke & Keady, 2002;Dewing, 2002Dewing, , 2007Digby et al, 2016;Hellstrom et al, 2007;Holland & Kydd, 2015;Hubbard et al, 2003;McKeown et al, 2010;Murphy et al, 2015;Pesonen et al, 2011;Pratt, 2002;Wiersma, 2011). People with dementia have also written about their experiences of the research process (McKillop, 2002;McKillop & Wilkinson, 2004;Robinson, 2002) and developed guidelines for research involving people with dementia (Scottish Dementia Working Group Research Sub-Group, 2014).…”

“…Gatekeepers and carers often provide relevant information, such as a participant's awareness of a dementia diagnosis (Pratt, 2002), signs of well-being or ill-being (Dewing, 2002), capacity to consent (Bartlett & Martin, 2002), and any sensitive topics to avoid (McKillop & Wilkinson, 2004). When gatekeepers are informed and involved, they may also assist with communicating the study aims and ensuring participants understand the research process (Bartlett & Martin, 2002;Hellstrom et al, 2007;Pratt, 2002), and supporting participants who experience distress (Digby et al, 2016;Hellstrom et al, 2007;Pratt, 2002).…”

Habermas and the therapeutic function of language

“…In this article, we have argued that the Habermasian concept of language can be successfully employed in the therapeutic process, because this concept is applicable both in the context of transparent, fully rationalized language, when the patient can properly communicate validity claims, and when language in nontransparent and dysregulated by the unconscious, which makes the patient unable to raise rational claims (Digby et al, , p. 1158).…”

“…Every therapy is necessarily predicated not only on the mutual agreement of the therapist and the patient concerning the choice, the course and/or the expected outcomes of treatment, but also on understanding which is based on rational communication and continues throughout treatment (Digby, Lee, & Williams, , p. 1158). This kind of consensus can be achieved in and through communicative action which presupposes the same understanding by the two parties involved of the objective world (facts), the social world (norms) and the subjective world (experiences) (Habermas, , p. 120).…”