Individuals with Prader-Willi syndrome and their perceptions of skin-picking behaviour

Self-injurious skin-picking is a distinctive feature of Prader-Willi syndrome. Until present, studies have addressed its prevalence, characteristics and causes. However, little is known about how individuals experience this type of behaviour and what impact skin-picking has on their lives. This paper reports on a study using a qualitative research method based on grounded theory to elicit the views of people with PWS on the sensitive issue of skin-picking behaviour. Research into the perspectives of individuals with PWS pertaining to their skin-picking behaviour is lacking. The interviews show that this behaviour may be elicited by a variety of events and that it may have adverse consequences for the individuals involved. In general, the interviews indicate that individuals with PWS are capable of providing clues on why they exhibit this behaviour and what impact it has on their quality of life. Knowledge on such clues may help in designing programmes aimed at supporting people with PWS to help them reduce skin picking.