Social, psychological and behavioural research in leprosy

Social, behavioural and psychological aspects of leprosy and its control have been relatively neglected areas in terms of research. However, in the past five years there have been clear signs of a change with more research being undertaken, more publications in the field and a greater emphasis in funding research using these methods. Leprosy Review commissioned a special issue (1) on the topic of social aspects in December 2000. There were workshops, papers, posters and seminars addressing research using social, behavioural and psychological methods throughout the International Leprosy Congress in Brazil, 2002. The use of social and behavioural research methods is relevant across the spectrum of leprosy control activities and rehabilitation. This research approach is relevant to the issues of information, education and communication, and awareness of first symptoms. The approach is important in addressing help-seeking behaviours and contact with health care providers. There are psychological and behavioural dimensions to communicating the diagnosis and relationships with the family and community. Social behaviour is also relevant to adherence with treatment and prevention of disability and rehabilitation. Recent work is also focusing on issues of stigma and community behaviours and attitudes. This paper selects areas where social, psychological and behavioural research methods can make a particular contribution: community awareness and attitudes to leprosy, first symptoms, help-seeking behaviour and delay in presentation, adherence with treatment, stigma and stigmatization, and socioeconomic aspects of rehabilitation. The following sections draw attention to what is known from research, highlighting the relevance and importance, and raise questions as to whether more needs to be done in implementing knowledge or further research