The University of Southampton
University of Southampton Institutional Repository

The use of reflective diaries to explore the liminal space between clinical encounters in predictive Huntington's disease clinics

The use of reflective diaries to explore the liminal space between clinical encounters in predictive Huntington's disease clinics
The use of reflective diaries to explore the liminal space between clinical encounters in predictive Huntington's disease clinics
introduction: What happens in a clinic appointment for a predictive Huntington’s disease (HD) test has been documented in various ways. However, much less is known about the liminal space between those sessions. Our aim was to explore the following questions: 1) how does the decision to have a predictive test for Huntington’s disease impact on patients’ lives and 2) what does it feel like for patients to experience this process? This patient group was chosen because the pace of decision making does not usually allow for such detailed scrutiny of this liminal space. Methods: We recruited 15 patients who were considering predictive testing for HD from four UK regional genetics services. Qualitative data was gathered from patients’ reflective diaries to explore the impact of the deliberation process for a predictive HD test and compared with data from clinical appointments. Data was analysed using thematic analysis, the voice approach and I-poems. Results: We focused on topics identified in the reflective diaries that were not present in the clinic appointments. Analysis highlighted themes such as ‘front and back-stage management’, ‘fear of stigmatisation’, ‘social responsibility’, ‘the absence of hope’ and ‘three imagined futures’. Voices and I-poems were used to illustrate these themes. Conclusion: We used a participatory approach to answering the research questions, which was proportionate for the private nature of the diaries and the sometimes-emotive experiences they contained. It may be possible to develop these explorations of patient deliberation between clinical appointments to inform discussion within clinical appointments. ESRC Grant ES/R003092/1
576-577
Ballard, Lisa M.
48a7b1af-4d2b-4ec7-8927-84361a3c62a9
Doheny, Shane
0ad0ef28-766e-410b-8db1-846f90b859f2
Lucassen, Anneke M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Clarke, Angus
934116e6-81eb-4f1f-ab9a-ef2b80b933cf
Ballard, Lisa M.
48a7b1af-4d2b-4ec7-8927-84361a3c62a9
Doheny, Shane
0ad0ef28-766e-410b-8db1-846f90b859f2
Lucassen, Anneke M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Clarke, Angus
934116e6-81eb-4f1f-ab9a-ef2b80b933cf

Ballard, Lisa M., Doheny, Shane, Lucassen, Anneke M. and Clarke, Angus (2022) The use of reflective diaries to explore the liminal space between clinical encounters in predictive Huntington's disease clinics. European Society for Human Genetics, Virtual. 28 - 31 Aug 2021. pp. 576-577 .

Record type: Conference or Workshop Item (Paper)

Abstract

introduction: What happens in a clinic appointment for a predictive Huntington’s disease (HD) test has been documented in various ways. However, much less is known about the liminal space between those sessions. Our aim was to explore the following questions: 1) how does the decision to have a predictive test for Huntington’s disease impact on patients’ lives and 2) what does it feel like for patients to experience this process? This patient group was chosen because the pace of decision making does not usually allow for such detailed scrutiny of this liminal space. Methods: We recruited 15 patients who were considering predictive testing for HD from four UK regional genetics services. Qualitative data was gathered from patients’ reflective diaries to explore the impact of the deliberation process for a predictive HD test and compared with data from clinical appointments. Data was analysed using thematic analysis, the voice approach and I-poems. Results: We focused on topics identified in the reflective diaries that were not present in the clinic appointments. Analysis highlighted themes such as ‘front and back-stage management’, ‘fear of stigmatisation’, ‘social responsibility’, ‘the absence of hope’ and ‘three imagined futures’. Voices and I-poems were used to illustrate these themes. Conclusion: We used a participatory approach to answering the research questions, which was proportionate for the private nature of the diaries and the sometimes-emotive experiences they contained. It may be possible to develop these explorations of patient deliberation between clinical appointments to inform discussion within clinical appointments. ESRC Grant ES/R003092/1

This record has no associated files available for download.

More information

Published date: 28 August 2022
Venue - Dates: European Society for Human Genetics, Virtual, 2021-08-28 - 2021-08-31

Identifiers

Local EPrints ID: 467968
URI: http://eprints.soton.ac.uk/id/eprint/467968
PURE UUID: 2241d20f-0c08-4930-b19e-052db4d06e52
ORCID for Lisa M. Ballard: ORCID iD orcid.org/0000-0003-1017-4322
ORCID for Anneke M. Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

Catalogue record

Date deposited: 26 Jul 2022 17:13
Last modified: 27 Jul 2022 01:47

Export record

Contributors

Author: Lisa M. Ballard ORCID iD
Author: Shane Doheny
Author: Angus Clarke

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×