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/