Lived experiences of psychological distress in neck dystonia

Purpose: Neck dystonia (ND) is a hyperkinetic movement disorder affecting the head and neck regions. High prevalence rates of psychological distress have been reported in ND. The aim of this research was to explore people’s experiences of distress, in order to understand the needs of this population further. Materials and Methods: Interpretative phenomenological analysis (IPA) was used to analyse data obtained from 11 semi-structured interviews with people with ND, recruited through a UK based charity. Results: Four group experiential themes were constructed from the data: 1) Uncertainty in the lead up to diagnosis “I was so full of fear” 2) Isolating nature of the condition “you don’t know who to turn to” 3) Mind and body relationship “is my head turning because I’m thinking about it?” and 4) A challenging new way of life “living life sideways.” Conclusions: Uncertainty, abandonment, loss, stigma and isolation were central to experiences of distress. Most participants believed that psychological difficulties were a consequence of living with ND, while some wondered if their distress preceded the onset of their condition. The study highlighted the need for greater psychological input.