Reasons for Reasons for Misconceptions: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 Characteristics that promote stigma:promote stigma:

Physical disfigurment of untreated Physical disfigurment of untreated patientspatients

Nonfatal, yet perceived as chronicNonfatal, yet perceived as chronic High endemicity in many areasHigh endemicity in many areas Low standards of livingLow standards of living Appears to be incurableAppears to be incurable Long incubation periodLong incubation period

Many of these factors could be Many of these factors could be changed through education!changed through education!

Reactions:Reactions: A)A) catastrophe – middle classcatastrophe – middle class

Pre-established ideas about « myth of Pre-established ideas about « myth of leprosy »leprosy »

Think disease will be painful and incurableThink disease will be painful and incurableExpect to be marginalizedExpect to be marginalizedHaving Hansen’s disease becomes the Having Hansen’s disease becomes the

center of their livescenter of their lives B) indifferent – lower class (46% in one study)B) indifferent – lower class (46% in one study)

Don’t make connection between Hansen’s Don’t make connection between Hansen’s disease and disease and leprosy leprosy

Poor more accustomed to being faced with Poor more accustomed to being faced with diseasedisease

May not see it as central issueMay not see it as central issue

Adoption of a sick roleAdoption of a sick role

A) Accept sick role imposed by societyA) Accept sick role imposed by society

Voluntarily withdraw from society (avoid Voluntarily withdraw from society (avoid rejection)rejection)

Patients themselves are revolted, Patients themselves are revolted, understand others distanceunderstand others distance

Open awareness contextOpen awareness context

Do nothing to change stigma or Do nothing to change stigma or misconceptionsmisconceptions

Need to be educated about their diseaseNeed to be educated about their disease

Adoption of a sick roleAdoption of a sick role

B) Don’t tell anyone about their B) Don’t tell anyone about their conditioncondition

Closed awareness contextClosed awareness context

Fear of being discovered governs Fear of being discovered governs social interactionssocial interactions

Protect themselves by maintaining Protect themselves by maintaining view of society’s ignoranceview of society’s ignorance

Most common behaviorMost common behavior

Adoption of a sick roleAdoption of a sick role

C) Career PatientsC) Career Patients

Reject traditional sick role and fight Reject traditional sick role and fight to change stigmato change stigma

Role as educators to bring real facts Role as educators to bring real facts before publicbefore public

Convincingly endorse positionConvincingly endorse position

Selective disclosing of informationSelective disclosing of information

Role conflictsRole conflicts

Dual process:Dual process:

Sick will change behavior once educated Sick will change behavior once educated career patients career patients change society’s change society’s traditional views traditional views decreased stigma decreased stigma

andand

Education campaigns Education campaigns lessened stigma lessened stigma patients won’t feel as ostracized (less patients won’t feel as ostracized (less behavior change expected)behavior change expected)

Result:Result:

Ideal conditions for the eradication of leprosyIdeal conditions for the eradication of leprosy

- more information, more diagnoses made- more information, more diagnoses made

- people more willing to seek treatment, - people more willing to seek treatment, better compliancebetter compliance

Access to information, diagnosis and treatment with multi-drug

therapy is essentialInformation 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.

Educate Medical Community:Educate Medical Community:

Won’t be as misdiagnosedWon’t be as misdiagnosed

People told about their diseasePeople told about their disease

Don’t stop treatmentDon’t stop treatment

Treatment StrategiesTreatment Strategies

Brazilians very accepting of holistic Brazilians very accepting of holistic approachesapproaches

Home medicineHome medicine

Religious medicineReligious medicine

Congruent with explanatory Congruent with explanatory modelsmodels