‘I have a feeling I can’t speak to anybody’: A thematic analysis of communication perspectives in people with Huntington’s disease Nicolò Zarotti Jane Simpson Ian Fletcher 1 Division of Health Research, 151268Lancaster University Faculty of Health and Medicine, Faculty of Health and Medicine, Lancaster University, UK Nicolò Zarotti, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, LA1 4YG, UK. Email: n.zarotti@lancaster.ac.uk ABSTRACT Objectives This study explored the perspectives of people affected by Huntington’s disease (HD) on their own communicative abilities. Methods Qualitative semi-structured interviews were carried out with eight people with early HD. The data were analysed through thematic analysis. Results Four themes were constructed from the data, characterised by the following core topics: How HD directs and mediates communi‐ cation; Regaining control to improve communication; Emotional outflows into communication and the struggle for separation; Sheltering as a way to boost confidence in communication. Discussion Separating patients’ identity as individuals from that of a person with a disease can help increase communicative control. Consistent with the general theory and model of self-regulation, patients should be allowed a wider range of choices to regain control over communication. Achieving better emotion regulation is of paramount importance for communication, and factors such as medi‐ cation regimes, relationships and existing coping strategies should be strengthened. Consistent with previous research, feelings of safety and the idea of a safe place (‘sheltering’) represent an effective coping mechanism. Practical implications include the re ‐ finement of communication and relationships among clinicians, caregivers, and patients with HD by considering a wider range of medical, psychological and socio-environmental factors. Keywords: Huntington’s disease, communication, emotion regulation, thematic analysis, patients’ perspectives Introduction Huntington’s disease (HD) is a hereditary chronic neurodegenerative disorder, which affects 10–12 people per 100,000 in the western world. 1 Typical symptoms include involuntary movements (chorea), cognitive deterioration, psycholog- ical difficulties, and psychiatric disorders. 2 Since the transmission mechanism is autosomal-dominant, affected indi- viduals have a 50% probability of transmitting it to their children (usual age of onset is 40–50 years). The mean life expectancy after the diagnosis is typically 20 years. 3 Genetic testing is available for individuals at risk, allowing them to know if they carry the disease gene before the onset of symptoms. All individuals with the gene without symptoms (‘presymptomatic’ people) will develop the disease. Many cognitive impairments have been reported in people with HD, including problems with all aspects of com- munication. Communication is understood in this context as a multifaceted discipline that investigates how people create meanings through messages transmitted across various channels, media and contexts, 4 and includes elements of lan- guage, speech, as well as emotion and social abilities. Regarding more specific aspects of communication, speech Article 1 Chronic Illness, 0 (2017), © The Author(s) 2017 10.1177/1742395317733793