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Stigma indicators and measurement S Bharat

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Information about Stigma indicators and measurement S Bharat
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Published on December 31, 2007

Author: Elena

Source: authorstream.com

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Research on AIDS Related Stigma : Some Methodological Issues :  Research on AIDS Related Stigma : Some Methodological Issues Shalini Bharat Tata Institute of Social Sciences Mumbai, India Understanding Stigma:  Understanding Stigma Stigma is defined as “ ..an attribute that is significantly discrediting ” Stigma is conceptualised on the basis of perceived deviance or difference from norms. Stigma involves the identification of negative or unfavourable characteristics in a person and treating him/her as not deserving respect or as less worthy than others on this basis . Characteristics of Stigma and the Act of Stigmatising :  Characteristics of Stigma and the Act of Stigmatising Identification of the problem that elicits the stigmatising response( HIV/AIDS) Identification of the person or group that is to be targeted for stigmatisation( PLH/A) Recognition and assignment of the stigma to the person or group( promiscuity) Development of a response to the stigmatised person that resolves the problem (anger, isolation) . Operationalising AIDS Related Stigma:  Operationalising AIDS Related Stigma Identify a condition/illness as being negative (HIV/AIDS) Identify the negative attributes in that condition Dreadful ( has no cure ) Shameful ( transmitted sexually) Irresponsible ( transmitted through injecting drug beh ) Dirty ( happens to poor people ) Immoral ( promiscuous, deviant beh) Operationalising AIDS Related Stigma:  Operationalising AIDS Related Stigma Identify the person /group associated with the condition people living with HIV/AIDS sex workers men having sex with men truckers , slum dwellers Initiate action to cope with the feelings generated isolate discriminate abuse , and so on . Types of Stigma:  Types of Stigma Overt /open and covert / subtle stigma Enacted /experienced and perceived / felt stigma Societal and self stigma Single and multiple stigmas Symbolic and verbal stigma Currently Used Methods in Stigma Research:  Currently Used Methods in Stigma Research Quantitative methods Survey designs Scales and Questionnaires Examples : DHS Survey UNAIDS Survey Scales to Measure Attitude Towards:  Scales to Measure Attitude Towards The AIDS epidemic “ AIDS is a dirty disease” People with HIV/ AIDs “ HIV positive people are a burden to society” Specific groups of population “ Prostitutes are the vectors of AIDS virus “ The etiology of AIDS “ AIDS has been brought into the country by foreigners” Questionnaires:  Questionnaires To assess fear of contagion , risk perception, avoidance behaviour - “ If a close relative of yours became sick with the virus that causes AIDS would you take care of him/her in your home ?” - “ Should pregnant health care professionals give care to HIV/AIDS patients?” Qualitative Methods:  Qualitative Methods Example : Studies by S. Bharat & UNIFEM ( India) , S. M. Moniko ( Uganda) Indepth interview- meanings associated with stigma, - contexts & dynamics of stigma , - rationale behind stigma , - actual incidents of stigma, - perceived stigma and fear of disclosure, - self stigma and self image . Qualitative Methods:  Qualitative Methods Case Study method - personal testimonies of HIV infected and affected people over a period/ in different settings Focus Group Discussion -societal perceptions ,underlying assumptions and the cultural construction of stigma Non participant observation -record behaviours, events , labels, signs indicative of stigma (usre of observation schedules and checklists ) Some Features of Existing Quantitative Instruments:  Some Features of Existing Quantitative Instruments Preponderance of self – report measures : scales and questionnaires Instruments developed primarily for the general population : mainly student pop, young people health providers (doctors, nurses, counsellors) Features of Instruments:  Features of Instruments Subjectivity and social desirability of responses “ Can you work in the same work place with the professionals who have HIV/ AIDS ” Hypothetical situations vs actual situations -intended behaviour vs actual behaviour “ If a close co-worker had HIV , I would continue to work with him ” “ I am willing to take care of AIDS patients ” A variety of response formats (Yes /No) ( True / False) (Agree / disagree / undecided) Features of Instruments:  Features of Instruments Gender neutral statements -“ If I had a choice I would not work with AIDS patients ” Exceptions: pregnant women , female sex workers Neutral statements w.r.t. infection source ( blood/ sexual ) Ambiguous statements “ I would be willing to eat meals with a HIV positive person ” “ AIDS victims deserve what they get ” Standardisation of tools Reliability, validity Features of Instruments:  Features of Instruments Mixed items - Items related to: - risk perception fear of contagion and avoidance behaviour “Given a choice I would not care for HIV patients ” attitudes rights of positive people / health professionals “ HCWs have a right to refuse to treat/ care for persons with HIV/AIDS” “ HIV positive person has the right to marry” Some Methodological Issues:  Some Methodological Issues Indicators associated with the Problem or condition ( AIDS ) - metaphorical language for AIDS ( AIDS = Death) - Negative attitude towards AIDS ( shameful disease) - Signs, generally fear evoking ( skull and bones ) - Symptoms descriptions (slim disease) Indicators used to assign the stigma - Descriptions of PLHAs as irresponsible, promiscuous - PLHAs treated as sources of infection (fear of contagion, touch avoidance) Some Methodological Issues:  Some Methodological Issues Indicators associated with person or group infected with HIV - words, phrases to describe PLHAs (gutter worms) - labels, signs, graphics to identify PLHAs ( HIV + written in red ink) - Adoption of certain practices to identify PWHAs ( dead bodies wrapped in plastic sheets) Some Methodological Issues:  Some Methodological Issues Indicators suggestiing response to the problem - Physical Isolation -Fear of contagion -Blaming the person -Lack of affect - Denial of human rights -Justify their isolation -Discriminate Beyond Quantitative Measures To Indepth Explorations:  Beyond Quantitative Measures To Indepth Explorations Guidelines for indepth interviews and FGDs Using qualitative research to develop survey instruements Scaling up from qualitative to quantitaive research Combining the qualitative and the quantitative methods Tools Development:  Tools Development Standardised and culturally relevant tools Cultural adaptations of foreign instruments Development of indigeneous tools Addressing Social Desirability:  Addressing Social Desirability Use of observation schedule/checklist Observe for labels and markers Placement of PLHAs bed at home/in hospital Practice of using gloves, other IC measures Adaptations of standardised observation Instruments (Qualpacs) Sample Selection/ Eliciting Participation:  Sample Selection/ Eliciting Participation Clinic based samples - self selected non representative sample stigma from healthcare seekers alone stigma limited to health settings/health providers explore stigma in other contexts (household work) Exploring Multiple Stigma:  Exploring Multiple Stigma Stigma experienced by hard-to-reach population msm, sex workers, idus, street children Stigma due to AIDS and due to age, gender, sexual orientation, occupation, drug use Exploring Multiple Stigma:  Exploring Multiple Stigma Stigma from more than one perspective Insider/outsider Victim/victimiser Building a Gender Perspective Stigma experienced/ perceived by women as care givers, partners stigma and pregnant women A Greater Conceptual Clarity:  A Greater Conceptual Clarity Incorporation of various dimensions of stigma cognitive, conative, behavioural Differentiate between : Overt and covert stigma Enacted and felt stigma Societal and self stigma Differentiate between : stigma and discrimination Expressions of Stigma:  Expressions of Stigma Media Policy Guidelines Insurance Legislation Content Analysis Neglected Groups in Stigma Research:  Neglected Groups in Stigma Research Household members of PLHAs Children infected / affected by HIV/AIDS Stigma among health providers/ counsellors Intervention Research:  Intervention Research Operations research Impact assessment and evaluation Scaling up interventions Participatory Research:  Participatory Research Involving the community of PLHAs in research designing PLHAs as field investigators Stigma Research : Addressing Ethical Issues:  Stigma Research : Addressing Ethical Issues Participation in research as a source of stigma Fear of disclosure, confidentiality and written consent for research Participation from people in the state of denial Stigma research : intended beneficiaries Does research further stigmatise or does it sensitise others to the issue? Thank You:  Thank You

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