'Your face freezes and so does your life': A qualitative exploration of adults' psychosocial experiences of living with acquired facial palsy.

Abstract

Facial palsy (FP) is a highly visible appearance-affecting condition and can have a significant impact on facial function. Qualitative research focussing on adults' experiences of living with acquired FP is limited. This study aimed to explore the psychosocial impact of acquired FP and to gain a greater understanding of patients' experiences of treatment and care in the United Kingdom. A qualitative interview study with individuals living with acquired FP. Ten adults with acquired FP were recruited. Their experiences were explored using semi-structured telephone interviews. Data were analysed using thematic analysis. Five master themes were identified through the thematic analysis: 1) grappling with a new identity, 2) the psychosocial impact of living with facial palsy, 3) isolation: dealing with 'one hell of a problem on your own', 4) a life on hold, 5) coping strategies. Findings indicated high levels of distress and significant challenges in managing the functional and psychosocial changes associated with acquiring FP. Participants expressed grief for their former appearance and identity, with photographs and mirrors acting as agonizing reminders. Many reported a sense of abandonment due to uncoordinated care and, as a result, engaged in an endless and often fruitless pursuit to gain control over FP by experimenting with their own treatment. Many reported the negative impact of their altered facial expressions on social interactions and a fear of being negatively evaluated. This study highlights a pressing need to review how FP is managed in the UK. To improve patient well-being, health care professionals could benefit from FP education, and patients from timely access to psychological support and clearer standards of care following diagnosis.