Exploring the experience of living with an acquired facial disfigurement

People with facial disfigurements encounter a number of difficulties: negative reactions from other people, problems in coming to terms with their appearance, and changes to their identity if the disfigurement is not congenital. This study aims to explore the experience of living with an acquired facial disfigurement. We aimed to understand the lived experience and psychological impact in participants dealing with a change to their face. In-depth, semi-structured interviews were conducted with two men and one woman with an acquired facial disfigurement, over the telephone. Data was analysed using Interpretative Phenomenological Analysis to explicate the ‘inside perspective’ of the participants’ experiences. Four overarching themes were identified: Projects: on-going meaning-making around identity and daily experience; Alienation: feeling disconnected and different owing to reactions of others and fearfulness; Loss: ‘shattered hopes’ attributed to disfigurement and loss of physical and social functioning; and Outlook: viewing the disfigurement as significant and getting something from it. These findings are considered in relation to the extant literature. Participant’s themes predominantly reflected difficulties concerning their experiences of other people and other people’s reactions. For this reason, clinicians should focus on formal interventions addressing sociality and relationships, such as social skills training and cognitive behavioural therapy. More research is needed to understand the interplay between self and facial identity, as well as to reveal the psychosocial implications of acquired facial disfigurement