Exploring beliefs and distress in patients with facial palsies

Abstract

ABSTRACT Evidence suggests that people with facial palsy may experience higher levels of distress, but the reasons for this are yet to be explored. This study aimed to explore people’s illness beliefs, emotions, and behaviours in relation to their facial palsy and understand how distress is experienced by this group. Semi-structured individual interviews were conducted in the UK with adults with facial palsy. Interview questions were theoretically informed by the Common-Sense Self-Regulatory Model (CS-SRM). Thematic Analysis was conducted following a combined inductive and deductive approach. Twenty people with facial palsy participated (70% female; aged 29–84). Patient distress was accounted for by illness beliefs (symptoms, cause, control and treatment, timeline and consequences), and four additional themes (coping behaviours, social support, identity and health service provision). Experiences of anxiety, depression, and anger were widespread, and some participants experienced suicidal ideation. The burden of managing a long-term condition, altered self-perception, and social anxiety and isolation were key drivers of distress. There is a need for more integrated psychological support for patients with facial palsy. Within clinical consultations, patient’s beliefs about facial palsy should be identified and systematically addressed. Service development should include appropriate referral to specialist psychological support via an established care pathway.