Altered body image: appearance‐related concerns of people with visible disfigurement

Abstract

The aim of this paper is to report a study to establish the extent and type of psychosocial needs of outpatients attending for treatment of a wide range of disfiguring conditions. Visible disfigurements can be associated with extensive psychosocial difficulties. The majority of research to date has been carried out with people identified by themselves or others as experiencing difficulties. Little is known about levels of distress in the broader population of patients receiving treatment for a range of disfiguring conditions. A cross-sectional survey was conducted, with a convenience sample. Participants (n = 458) drawn from 15 outpatient clinics completed standardized measures of anxiety and depression (Hospital Anxiety and Depression Scale), social anxiety and avoidance (Derriford Appearance Scale short-form) and quality of life (World Health Organization Quality of Life Brief Scale). A semi-structured interview was used to generate further quantitative and qualitative data about individual concerns, and satisfaction with the provision of care. Staff views about levels of psychosocial distress were elicited through group discussions. The results revealed high levels of psychological distress in the sample, compared with normative values. The majority of difficulties related to problems experienced in social situations. Patient satisfaction with care was generally high; however, and 71% of participants expressed a moderate to strong desire for a health care professional with training to deal with their appearance-related concerns. Nursing staff felt unable to address patients' appearance-related difficulties because of time constraints, lack of an environment conducive to the discussion of patients' concerns, and lack of appropriate knowledge and training. A significant proportion of participants experienced psychosocial distress in relation to their visible difference. Psychosocial needs were poorly met in current outpatient care provision, and a range of options could be considered to address these more effectively.