A Participatory Action Research (PAR) into how the language and vocabulary of diabetes facilitates peoples’ experience of living with diabetes: the Language in Diabetes Study (LIDAS)

Usher, Andrew Peter (2021) A Participatory Action Research (PAR) into how the language and vocabulary of diabetes facilitates peoples’ experience of living with diabetes: the Language in Diabetes Study (LIDAS). DProf thesis, Middlesex University / New School of Psychotherapy and Counselling (NSPC). [Thesis]

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There are 4.2 million people diagnosed with diabetes in the UK. It has been established that diabetes causes psychological strain for people with diabetes (PWD) both in increased mental health diagnoses and specific issues under the heading “diabetes distress” (DD). The language and vocabulary of diabetes has been implicated in DD as it may comprise of a restricted code/dialect with negative connotations. Suggestions have also been made to alter speech forms to avoid this utilising alternative vocabulary. A further question however, is why this phenomenon persists at all?

Aims: The purpose of the Language in Diabetes Action Study (LIDAS) was to explore how the language and vocabulary of diabetes facilitates peoples’ experience of living with diabetes. As a long-term condition diabetes has a high burden of selfmanagement practices by the patient. Language and vocabulary is seen as a mediating factor in PWD understanding the meaning and purpose of those practices and how they mitigate risks for future complications and promote health. A phenomenological and existential underpinning understands that language conveys meaning but also shapes meaning and this will influence a PWD way of being with diabetes. A thorough review of the literature comprises scientific diabetes-related literature, health psychology literature, existential and post-modernist literature and comparison with language and its significance in other long-term conditions.

Method: The method deployed was Participatory Action Research by forming a Cooperative Enquiry group of Co-researchers that participated through cycles of dialogue and reflection to provide a “slice through” rather than a “snapshot” of their lifeworld experience with diabetes. This was in order to move closer to research with PWD as opposed to on PWD. Challenges in study realisation were explored and how technology in terms of video conferencing and transcription assisted. Nine participants contributed in the PAR group to varying degrees, of which a core group of 4 committed Co-researchers provided substantiate involvement over eight months of cycles of reflection and dialogue on a weekly or fortnightly basis by consensus. Additionally, work peers from Diabetes UK volunteered involvement. Co-researchers and team peers provided 27 hours of transcribed material, 9000 words of dialectic material from the DUK Forum, with a total number of participatory voices totalling 40 respondents. The gender of participants, including those from the DUK Forum was quite even (47% male, 53% female). However, female participants contributed more cycles of dialogue and reflection over time. The data then comprises closer to 75% of the transcribed data set. Participants’ age ranged from 21 to 50 with a mean calculated age of 32. A hermeneutic developed for Co-researchers through cycles as they became more invested and involved; this was augmented using interpretive analysis in the manner of Foucauldian genealogy considering bio-power, regimes of truth and Heidegger’s notion of entanglement explicated in his discussion in the question concerning technology. In addition to Co-researchers reflections each dialogue was transcribed and analysed for themes and made available to Co-researchers for further comment, so each cycle refined and reworked the thematic analysis.

Findings and Discussion: The LIDAS group findings strongly support the phenomenon of a restricted code/dialect in diabetes and the significance in the aetiology of DD. Furthermore, the findings explore the underlying beliefs implicated and the mechanisms that may open understanding to the root of this phenomenon and the route by which it sustains itself. This abstract, idealistic notion is a discourse that concerns an unreflected belief that a PWD attitude and personality is central to management, termed Capacity to Control. In this way a PWD is viewed as having to become highly motivated, disciplined, ascetic and compliant to a restricted regimen, subjected to measurement and assessment of their HbA1c targets. This is as opposed to attributing diabetes management to Skills, Knowledge and Tools that are contextually optimised for the individual PWD and contribute to their pursuit of lifeworld goals. This is epitomised in the exemplars of Structured Patient Education, Pump Therapy and Flash Glucose Monitoring. The discussion explores how this entangled discourse leads to an illusion of choice, an abstract rather than humanistic view of PWD, burnout and DD, moralism and stigma. The study further notes that tensions over targets, resources and cost produce consumerist healthcare and a notion of a patient’s responsibility to be compliant and that these pressures are the root of Capacity to Control.

Synthesis of Findings: This section continues by drawing together the themes revealed in the findings with the current literature and the concepts of Heidegger and Foucault. It also explicates the tensions and forces at play for PWD and HCP, drawing attention to Healthcare for long term conditions viewed in the light of consumerism and moralism. The involvement of counselling psychology and psychotherapy is explored and problems that arise in how referrals are made and what psychological care means for diabetes.

Conclusion: The study concludes by assessing study limitations and evaluating PAR as a means of generating data and what this means for the findings. It goes on to explore the gender bias and its possible significance for understanding the findings. An exploration of the possible uses of the findings in relation to HCP training and reflective practice, counselling and psychotherapy services for PWD, patient empowerment for PWD and possible future purposes for PAR in health and psychology. It also suggests possibilities for further research: the potential for using the LIDAS study themes to generate survey questions and establish the extent of applicability with wider participation or to address the gender bias. It also assess the possibility of developing LIDAS adapted patient education for clinical trial compared with current patient education.

Item Type: Thesis (DProf)
Sustainable Development Goals:
Research Areas: A. > School of Science and Technology
B. > Theses
C. Collaborative Partners > New School of Psychotherapy and Counselling (NSPC)
Item ID: 36692
Depositing User: Lisa Blanshard
Date Deposited: 01 Nov 2022 15:02
Last Modified: 01 Nov 2022 15:18
URI: https://eprints.mdx.ac.uk/id/eprint/36692

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