The lived experience and quality of life with burn scarring—The results from a large-scale online survey

• Published in: Burns 2018-11, Vol.44 (7), p.1801-1810
• Main Authors: Brewin, M.P., Homer, S.J.
• Format: Article
• Language: English
• Subjects: Adaptation, Psychological; Adolescent; Adult; Aftercare; Anxiety - psychology; Burn scar; Burns - complications; Burns - physiopathology; Burns - psychology; Cicatrix - etiology; Cicatrix - physiopathology; Cicatrix - psychology; Cicatrix, Hypertrophic - etiology; Cicatrix, Hypertrophic - physiopathology; Cicatrix, Hypertrophic - psychology; Content analysis; Female; Humans; Internet; Keloid - etiology; Keloid - physiopathology; Keloid - psychology; Male; Middle Aged; Physical Appearance, Body; Psychology; Psychosocial; Qualitative Research; Quality of Life; Scarring; Social Distance; Social Support; Survey; Surveys and Questionnaires; Themes; Young Adult
• ISSN: 0305-4179; 1879-1409
• DOI: 10.1016/j.burns.2018.04.007

•A large-scale online survey of 119 patients with burn scars.•Patients with burn scars showed higher levels of pre-existing psychological difficulties.•A definite lack of support exists for scar patients after hospital discharge.•Content analysis is used in order to better understand the lived experience.•Six key themes in the psychological impact of burn scarring are identified. A large-scale online survey was designed to both inform and direct the development of an online community healthcare hub for people living with scarring. Focussed areas of questioning were generated to gather information on psychological symptoms, scar support and knowledge of wounds and healing. Simple statistical data was produced on the severity, aetiology and location of scarring. A secondary data analysis of the survey responses was conducted on more focussed themes. This survey was completed by 1034 people living with scars, 119 of which had burn scarring. The results highlight that patients with burn scars have higher levels of pre-existing psychological difficulties, carry a greater number of scars and experience more symptoms. A lack of support is identified for patients with scars once they have been discharged by their healthcare provider. The most popular forms of support were chosen as face-to-face interaction or online support. Key areas of support were found to be psychology particularly for help with acceptance or coping methods, wound care advice and meeting with other patients with scars. For these patients, key themes in the psychological impact of scarring include appearance-related concerns, social anxiety, acceptance and coping, experience of symptoms, skin viability and survivorship.