Nicholas Jenkins

Putting it in context: the use of vignettes in qualitative interviewing

The article draws on two separate studies employing developmental vignettes (hypothetical scenarios which unfold through a series of stages) to interview research participants. One study used the ‘Davie’ vignette, which was a conventional fixed narrative, while in the second, the ‘Jack and Jenny’ vignettes were made interactive by hyperlinking a series of PowerPoint scenarios and making the choice of the succeeding slide dependent on the interviewee’s reaction to its predecessor. Our analytic standpoint, in respect of both vignettes, is that of Schutzian phenomenology. We point to differences in both topical and motivational relevances in the processes of interpretation undergone by participants in considering the vignette scenario and in the situation of action. However, we show that research participants’ responses to vignettes can yield data of interest in their own right as participants perform ‘Thou-orientations’ and ‘They-orientations’ in their consideration of the stimuli. We close with a comparative evaluation of the fixed ‘Davie’ and the interactive ‘Jack and Jenny’ vignettes.

Participants' experiences of intensifying insulin therapy during the Treating to Target in Type 2 Diabetes (4-T) trial: qualitative interview study.

Diabet. Med. 28, 543–548 (2011)

Core principles for involving people with dementia in research: innovative practice

The Scottish Dementia Working Group Research Sub-group is part of the Scottish Dementia Working Group, an internationally renowned campaigning group of people with dementia. We co-created our core principles for involving people with dementia in research between September and December 2013. The principles address six areas: (i) how people with dementia are valued and involved in research, (ii) lived experience as valid knowledge, (iii) physical and emotional safety, (iv) accessibility of all aspects of research, (v) training for researchers and (vi) the impact of our experiences of time on research processes. Through our core principles, we challenge researchers across all disciplines to re-consider how we and other people with dementia are involved in research as well as how knowledge in dementia research is created.

Conflict and user involvement in drug misuse treatment decision-making: a qualitative study

BackgroundThis paper examines client/staff conflict and user involvement in drug misuse treatment decision-making.MethodsSeventy-nine in-depth interviews were conducted with new treatment clients in two residential and two community drug treatment agencies. Fifty-nine of these clients were interviewed again after twelve weeks. Twenty-seven interviews were also conducted with staff, who were the keyworkers for the interviewed clients.ResultsDrug users did not expect, desire or prepare for conflict at treatment entry. They reported few actual conflicts within the treatment setting, but routinely discussed latent conflicts – that is, negative experiences and problematic aspects of current or previous treatment that could potentially escalate into overt disputes. Conflict resulted in a number of possible outcomes, including the premature termination of treatment; staff deciding on the appropriate outcome; the client appealing to the governance structure of the agency; brokered compromise; and staff skilfully eliciting client consent for staff decisions.ConclusionAlthough the implementation of user involvement in drug treatment decision-making has the potential to trigger high levels of staff-client conflict, latent conflict is more common than overt conflict and not all conflict is negative. Drug users generally want to be co-operative at treatment entry and often adopt non-confrontational forms of covert resistance to decisions about which they disagree. Staff sometimes deploy user involvement as a strategy for managing conflict and soliciting client compliance to treatment protocols. Suggestions for minimising and avoiding harmful conflict in treatment settings are given.

Inter‐embodiment and the experience of genetic testing for familial hypercholesterolaemia

In this article we explore the concept of inter-embodiment and its potential for advancing sociological research into illness biography and genetic identity. Inter-embodiment theory views embodied knowledge as produced through relations between bodies, as opposed to originating from within the body or as the product of relations between disembodied selves. Drawing on a qualitative study in which we interviewed 38 individuals about their experiences of discovering they had high cholesterol and undergoing genetic testing for familial hypercholesterolaemia (FH), we discuss how their narratives may be understood from an inter-embodiment perspective. The participants frequently talked at length about their family histories of high cholesterol and cardiovascular disease. Through these accounts, we develop the concept of the family corpus in order to highlight the role body networks play in shaping lay constructions of genetic identity and a familial disease biography. The notion of a family corpus, we argue, is useful in understanding why genetic testing for FH was experienced as either biographical re-enforcement or as biographical disruption. We conclude by discussing the implications of our findings for future sociological research into illness biography and genetic identity.

Creating Vignettes of Early Onset Dementia: An Exercise in Public Sociology

Drawing on core principles of public sociology, this article discusses the creation of four theatrical vignettes about living with early onset dementia (symptoms of dementia pre-65). The vignettes were developed through an Image Theatre workshop, involving families living with early onset dementia. They were designed to capture key themes, issues and experiences that emerged from the group’s collective experience. While the content of the vignettes speaks to a range of key sociological debates (especially in relation to the lived experience of time, risk, social exclusion and stigma in dementia) the process of creating and using the vignettes represents the first empirical application of a (public) sociological approach to ‘person-centredness’ in dementia; which views persons as ‘dividual’ and selves as transactive. We conclude by advocating for a rich and diverse public sociology of dementia in the 21st century.

INTERDEM Academy special section – Digging for Dementia: exploring the experience of community gardening from the perspectives of people with dementia

ABSTRACT Objectives: The study sought to explore the lived experiences of people with dementia who participate in community-based gardening programmes. Methods: A collaborative gardening project was conducted over six weeks at a day centre for people with dementia. Six participants were recruited from the centres attendees. Each session was co-designed by participants. Semi-structured group interviews were conducted each week, and researcher observations were documented. Semi-structured interviews were also conducted with the centres staff to explore their views and to contextualise gardening participants’ experiences. Data were analysed inductively using thematic analysis. This paper focuses upon three of the studys emergent themes: identity, agency, and community. Results: The findings revealed that for people with dementia, gardening is not merely a matter of enjoying time outdoors; it is a forum for the articulation of identity and selfhood and expression of agency, and can facilitate the development of new social bonds based upon shared interests, rather than a shared diagnosis. Conclusion: Gardening-based interventions can offer more than simply facilitating outdoor engagement and promoting social interaction. When conditions are right, gardening can be an effective vehicle for the promotion of social citizenship and expression of selfhood and agency in dementia.

No substitute for human touch? Towards a critically posthumanist approach to dementia care

ABSTRACT This paper develops a sociological critique of the pre-eminence of humanism in dementia care policy and practice. Throughout the centuries, humanism has served as something of a double-edged sword in relation to the care and treatment of people living with progressive neurocognitive conditions. On the one hand, humanism has provided an intellectual vehicle for recognising people with dementia as sentient beings with inalienable human rights. On the other hand, humanist approaches have relied upon and re-enforced normative understandings of what it means to be human; understandings that serve to position people with dementia as deficient. Two posthumanist approaches to dementia care policy and practice are explored in this paper: transhumanism and critical posthumanism. The former seeks, primarily, to use advances in 21st-century technologies to eradicate dementia. The latter seeks to de-centre anthropomorphic interpretations of what it means to be a person (with dementia), so as to create space for more diverse human–non-human relationships to emerge. The paper concludes with some tentative suggestions as to what a critically posthumanist approach to dementia care policy and practice might look like, as we move closer towards the middle of the 21st century.

Participants' experiences of intensifying insulin therapy during the Treating to Target in Type 2 Diabetes (4-T) trial

Diabet. Med. 28, 543–548 (2011)

Participants’ experiences of intensifying insulin therapy during the Treating to Target in Type 2 Diabetes (4-T) trial: qualitative interview study: Participants’ experiences of intensifying insulin therapy

Diabet. Med. 28, 543–548 (2011)