title: Illness perceptions of leprosy-cured individuals in Surinam with residual disfigurements - "I am cured, but still I am ill".
abstract: Objective Leprosy has rarely been the subject of health psychology research despite its substantial impact. Our aim was to explore illness perceptions in patients and their health care providers in Surinam. The Common Sense Model (CSM) was the guiding theoretical model. Design Patients with biomedically cured leprosy and their health care providers completed the B-IPQ and took part in semi-structured interviews. The literature on illness perceptions in patients with leprosy was reviewed. Main outcome measures Patients' B-IPQ scores were compared with samples of patients with other (chronic) illnesses, and with health care providers completing the questionnaire as if they were visibly disfigured patients. Quotations from the semi-structured interviews were used to contextualise the illness perceptions. Results Patients' B-IPQ scores reflected the chronic nature of leprosy and were comparable with those with other chronic illnesses. Health care providers perceived leprosy to have a greater negative impact than did the patients. Perceived understanding of causes differed considerably between patients and health care providers. Conclusion Leprosy continues to be experienced as an illness with major psychological and social consequences such as stigmatisation, even after biomedical cure. Interventions that target patients, health care providers, and society at large may help reduce perceived shame and stigma. The CSM is a helpful theoretical model in studying this population.
authors.affiliation: 1 Department of Medical Psychology, Leiden University Medical Centre, Leiden, The Netherlands.
authors.forename: Mark Ac
authors.initials: MA
authors.lastname: van Haaren
authors.affiliation: 2 Anton de Kom University, Paramaribo, Surinam.
authors.forename: Melinda
authors.initials: M
authors.lastname: Reyme
authors.affiliation: 3 Glasgow Caledonian University, Glasgow, Scotland.
authors.forename: Maggie
authors.initials: M
authors.lastname: Lawrence
authors.affiliation: 2 Anton de Kom University, Paramaribo, Surinam.
authors.forename: Jack
authors.initials: J
authors.lastname: Menke
authors.affiliation: 1 Department of Medical Psychology, Leiden University Medical Centre, Leiden, The Netherlands.
authors.forename: Ad A
authors.initials: AA
authors.lastname: Kaptein
mesh_terms: D000328:Adult; D000368:Aged; D002908:Chronic Disease / Q000523:psychology*; D005260:Female; D006801:Humans; D007918:Leprosy / Q000150:complications / Q000523:psychology* / Q000628:therapy; D000069451:Long Term Adverse Effects / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D009140:Musculoskeletal Diseases / Q000382:microbiology / Q000523:psychology*; D010465:Perception; D036301:Qualitative Research; D057545:Social Stigma; D013532:Suriname; D011795:Surveys and Questionnaires; D013997:Time Factors
keywords: Common Sense Model; Leprosy; chronic illness; illness perceptions; stigma