Coping with Stigma: "Don't Call Me a Leper"

Coping with Stigma: "Don't Call Me a Leper" Lauren Finley

Reasons for Misconceptions: • Past reality of the disease • Used to encompass many other illnesses • Image of Biblical leper • Idea that it’s highly communicable • Considered incurable • Physical disfigurement • Think it only exists in uncivilized places • Name change very positive for changing stigma

Characteristics that promote stigma: • Physical disfigurment of untreated patients • Nonfatal, yet perceived as chronic • High endemicity in many areas • Low standards of living • Appears to be incurable • Long incubation period Many of these factors could be changed through education!

Reactions: • A) catastrophe – middle class Pre-established ideas about « myth of leprosy » Think disease will be painful and incurable Expect to be marginalized Having Hansen’s disease becomes the center of their lives • B) indifferent – lower class (46% in one study) Don’t make connection between Hansen’s disease and leprosy Poor more accustomed to being faced with disease May not see it as central issue

Adoption of a sick role A) Accept sick role imposed by society Voluntarily withdraw from society (avoid rejection) Patients themselves are revolted, understand others distance Open awareness context Do nothing to change stigma or misconceptions Need to be educated about their disease

Adoption of a sick role B) Don’t tell anyone about their condition Closed awareness context Fear of being discovered governs social interactions Protect themselves by maintaining view of society’s ignorance Most common behavior

Adoption of a sick role C) Career Patients Reject traditional sick role and fight to change stigma Role as educators to bring real facts before public Convincingly endorse position Selective disclosing of information Role conflicts

Dual process: Sick will change behavior once educated  career patients  change society’s traditional views  decreased stigma and Education campaigns  lessened stigma  patients won’t feel as ostracized (less behavior change expected) Result: Ideal conditions for the eradication of leprosy - more information, more diagnoses made - people more willing to seek treatment, better compliance

Access to information, diagnosis and treatment with multi-drug therapy is essential Information campaigns about leprosy in high risk areas are crucial so that patients and their families, who were historically ostracized from their communities, are encouraged to come forward and receive treatment. Eliminating leprosy has far greater implications than simply resolving a public health problem. Leprosy is closely linked with poverty and leprosy elimination contributes to poverty alleviation efforts.

Awareness and Information Campaign about Hansen's Disease

You too can help eliminate this disease in Vila Claudia. Direct people with suspicious spots to go to the health posts and contribute to end prejudice.

Educate Medical Community: Won’t be as misdiagnosed People told about their disease Don’t stop treatment

Treatment Strategies Brazilians very accepting of holistic approaches Home medicine Religious medicine Congruent with explanatory models

Coping with Stigma: "Don't Call Me a Leper"