’’Your future gets stuck’!Your future gets stuck’!exploring the communication disconnects in health communicationexploring the communication disconnects in health communication

By Thomas Tufte, Ph.D, ProfessorBy Thomas Tufte, Ph.D, ProfessorRoskilde University, DenmarkRoskilde University, Denmark

ttufte@ruc.dkttufte@ruc.dk

Presented at Presented at

Saint Augustine University, Saint Augustine University, Mwanza, 18 March 2010Mwanza, 18 March 2010

Today’s Presentation: Today’s Presentation: 1. Reporting from a Media Ethnography1. Reporting from a Media Ethnography

2. Discuss policy implications2. Discuss policy implications

Establishing broader contexts of analysis to Establishing broader contexts of analysis to understand health(HIV/AIDS) Communication understand health(HIV/AIDS) Communication (in Africa)(in Africa)

Methodology: Essay Study as part of overall Methodology: Essay Study as part of overall methodologymethodology

Identifying Communication Disconnects & Identifying Communication Disconnects & Communication ChallengesCommunication Challenges

Cultural Studies (I)Cultural Studies (I)

Latin American Tradition Latin American Tradition (J.Martin-(J.Martin-Barbero, N.García-Canclini, J.González, Barbero, N.García-Canclini, J.González, R.Ortiz + Paulo Freire)R.Ortiz + Paulo Freire)

(mediated) (mediated) Popular Culture in Everyday Popular Culture in Everyday LifeLife – i.e. telenovelas – i.e. telenovelas

Enhancing Enhancing Cultural CitizenshipCultural Citizenship A Potential for Change in Drama and A Potential for Change in Drama and

StorytellingStorytelling

Cultural Studies (II)Cultural Studies (II)

Historical formation of social and cultural Historical formation of social and cultural practicespractices

Historical formation of audiencesHistorical formation of audiences The limitations of mass media in achieving The limitations of mass media in achieving

behaviour changebehaviour change

HIV/AIDS CommunicationHIV/AIDS Communication(Health Communication)(Health Communication)

Inherited strategies from family planning Inherited strategies from family planning ((Diffusion, persuasion, effects, behaviourDiffusion, persuasion, effects, behaviour

Social marketingSocial marketing)) Slow development of genuine strategiesSlow development of genuine strategies Limitations includeLimitations include

Short-termShort-term Limited formative researchLimited formative research Simplified message transmissionSimplified message transmission Inadequate monitoring and evaluationInadequate monitoring and evaluation

A Science and a Practice on the A Science and a Practice on the Move?Move?

Bridging diffusion and behaviour change Bridging diffusion and behaviour change with empowerment and participationwith empowerment and participation

Bridging mostly in words, less in actionBridging mostly in words, less in action Community based strategies using mediaCommunity based strategies using media The Comm Discipline Challenged?The Comm Discipline Challenged?

Our response to development challengesOur response to development challenges How we feed theory into policy & praticeHow we feed theory into policy & pratice

The need forThe need forQualitative Audience StudiesQualitative Audience Studies

Audience ethnographyAudience ethnography Micro-studies of social and cultural Micro-studies of social and cultural

practicespractices Contexts of histories & policies, institutions Contexts of histories & policies, institutions

and discursive environmentsand discursive environments

Youth in GrahamstownYouth in Grahamstown

A micro-cosmos of South AfricaA micro-cosmos of South Africa 120.000 inhabitants120.000 inhabitants 5 schools selected5 schools selected 124 essays written in 11th grade124 essays written in 11th grade 10 focus-group discussions (60 students)10 focus-group discussions (60 students) A close-up study of 18 youth:A close-up study of 18 youth:

PhotoethnographyPhotoethnography Participant ObservationParticipant Observation 3 x Individual Interviews with each3 x Individual Interviews with each Mini KAP-studyMini KAP-study

Essay TaskEssay Task

124 students, 15-19 year old, 5 different 124 students, 15-19 year old, 5 different secondary schoolssecondary schools

Essays written based on the following statement: Essays written based on the following statement: HIV/AIDS affects each and every one of us, no HIV/AIDS affects each and every one of us, no matter how ’special’ we think we are, and is matter how ’special’ we think we are, and is rapidly becoming a part of everyone’s reality. rapidly becoming a part of everyone’s reality. Drawing on own experience, to what degree do Drawing on own experience, to what degree do you think this statement is true, and why?’you think this statement is true, and why?’

Understanding the pandemic..Understanding the pandemic..

’’to understand the HIV pandemic in Africa to understand the HIV pandemic in Africa is to understand how people who live with is to understand how people who live with it explain it, or rather how they construct it explain it, or rather how they construct schemes of risk assessment in the face of schemes of risk assessment in the face of it. It is by listening to the ’stories’ that we it. It is by listening to the ’stories’ that we can understand the context in which the can understand the context in which the pandemic is constructed, including factors pandemic is constructed, including factors that may promote or constrain behaviour that may promote or constrain behaviour change (Rugalema 2004: 192)change (Rugalema 2004: 192)

Township girl (1)Township girl (1) HIV/ Aids is the killer in our days, especially to our youth. HIV/ Aids is the killer in our days, especially to our youth.

People of Rhini are just making fun of people who are living People of Rhini are just making fun of people who are living with HIV/AIDS, that is why we have funerals every with HIV/AIDS, that is why we have funerals every weekend. It’s also one of the reason that people who are weekend. It’s also one of the reason that people who are HIV positive don’t come forward, they end up turning to HIV positive don’t come forward, they end up turning to alcohol and drugs. Even in hospitals once you are told by alcohol and drugs. Even in hospitals once you are told by the doctor that you are HIV positive, they told everyone that the doctor that you are HIV positive, they told everyone that you are HIV positive, before you even tell your own family. you are HIV positive, before you even tell your own family. (…) People always think that if they tell their families about (…) People always think that if they tell their families about their status, they would not be accepted. There is a girl that their status, they would not be accepted. There is a girl that I know who is HIV positive. The first person she told was I know who is HIV positive. The first person she told was her school Principal. The principal told her teachers and her school Principal. The principal told her teachers and the teachers told the students. No one wanted to be the teachers told the students. No one wanted to be associated with this girl. They treated her so badly that she associated with this girl. They treated her so badly that she quite school. The way that they where talking to her as if quite school. The way that they where talking to her as if she was not a human being (NB8-F).she was not a human being (NB8-F).

Township girl (2) Township girl (2)

Close by to my house there is a little girl who is HIV Close by to my house there is a little girl who is HIV positive, at her home it’s only her sister who knows positive, at her home it’s only her sister who knows about the young girl’s status. They are both scared that about the young girl’s status. They are both scared that if they tell their parents, they will chase her away from if they tell their parents, they will chase her away from home. Her sister told me, and asked if I could keep it a home. Her sister told me, and asked if I could keep it a secret. In clinics people who are HIV positive are being secret. In clinics people who are HIV positive are being treated badly. Even if you ask them to get you some treated badly. Even if you ask them to get you some water, they will shout at you for no reason. Even if you water, they will shout at you for no reason. Even if you are still in bad condition to be discharged, they will tell are still in bad condition to be discharged, they will tell you that you need to go home because there’s no place you that you need to go home because there’s no place for you here.You can just go home and die there. If your for you here.You can just go home and die there. If your family knows your status they wont take you to the family knows your status they wont take you to the doctor or hospital, only when your situation is worsened doctor or hospital, only when your situation is worsened they will take you to TEMBA SANTA HOSPITAL ( TB they will take you to TEMBA SANTA HOSPITAL ( TB Hospital) and say you had TB. Even at your funeral they Hospital) and say you had TB. Even at your funeral they will just say you died of TB. I think if we can learn to be will just say you died of TB. I think if we can learn to be more open about AIDS, we can defeat it (NB9-F).more open about AIDS, we can defeat it (NB9-F).

Issues appearing in the texts…Issues appearing in the texts… StigmaStigma – ill treatment in hospitals, silence or gossip in – ill treatment in hospitals, silence or gossip in

the community, lack of disclosure.the community, lack of disclosure.

Fear/Identities at RiskFear/Identities at Risk – healthy youth with a future. – healthy youth with a future. Ontological insecurity. The future is getting stuck!Ontological insecurity. The future is getting stuck!

Stress and DenialStress and Denial – ’dont care’ attitude. Some are – ’dont care’ attitude. Some are constructing an ’other’ who is more at risk. Individual and constructing an ’other’ who is more at risk. Individual and collective denial. Alcoholism, violence.collective denial. Alcoholism, violence.

Gender InequalityGender Inequality – men decide, but blame women, – men decide, but blame women, prostitution.prostitution.

Youth PerceptionsYouth Perceptions

Massive recognition of HIV/AIDS being a Massive recognition of HIV/AIDS being a big problem, in the community and in the big problem, in the community and in the country: ITS REAL!country: ITS REAL!

Often spoken of as a ’killer disease’ – Often spoken of as a ’killer disease’ – seen as a death sentenceseen as a death sentence

A manifest expression of fear to get the A manifest expression of fear to get the virusvirus

Modes of TransmissionModes of Transmission

They demonstrate high levels of They demonstrate high levels of knowledge about transmissionknowledge about transmission

Very stereotype and gendered Very stereotype and gendered accusations (men accusing women to bear accusations (men accusing women to bear the largest responsibility for carelessness the largest responsibility for carelessness in protection and in spread of virus – most in protection and in spread of virus – most in lowest income schools)in lowest income schools)

A clear understanding of how to prevent HIV. All key A clear understanding of how to prevent HIV. All key messages come through (slogan-like):messages come through (slogan-like):

’’the great thing is to talk about it’the great thing is to talk about it’ ’’And to the youth,they must stick to one partner and be And to the youth,they must stick to one partner and be

protected, the condoms are there for safe sex’protected, the condoms are there for safe sex’ ’’Use a condom because HIV/AIDS is a killer disease’Use a condom because HIV/AIDS is a killer disease’ ’’I think the solution is to condomize’I think the solution is to condomize’ ’’Message: Please, ’don’t compromise, condomize, people’Message: Please, ’don’t compromise, condomize, people’ ’’AIDS kills our people so we must fight it’AIDS kills our people so we must fight it’ ’’don’t be shy, talk about it, eat good food, especially fruit and don’t be shy, talk about it, eat good food, especially fruit and

vegetables, and drink juice, not alcohol’vegetables, and drink juice, not alcohol’ ’’Wrap it, or Zip it’Wrap it, or Zip it’

Knowing your ABC..Knowing your ABC..

Living with HIV & AIDSLiving with HIV & AIDS

Many (esp from low income schools) Many (esp from low income schools) express knowing someone or know of express knowing someone or know of someone having HIV, AIDS or having died someone having HIV, AIDS or having died of AIDSof AIDS

Many of the students from low income Many of the students from low income schools have been to funerals schools have been to funerals (characterized by lack of openess about (characterized by lack of openess about what the person died of)what the person died of)

The Burden of StigmaThe Burden of Stigma Statements show a persistent pattern of reaction Statements show a persistent pattern of reaction

amongst community members: PLWHAs or just people amongst community members: PLWHAs or just people suspected of being positive seem to experience social suspected of being positive seem to experience social marginalization, isolation and ill treatment by other marginalization, isolation and ill treatment by other community members:community members:

If you talk about your status, you live for a long time. When you If you talk about your status, you live for a long time. When you don’t talk about it, you always think about it and you suffer in the don’t talk about it, you always think about it and you suffer in the process and you die. What I don’t like is when the community process and you die. What I don’t like is when the community treats people living with HIV/AIDS badly. Instead of welcoming treats people living with HIV/AIDS badly. Instead of welcoming them from your house you chase them away. Other families they them from your house you chase them away. Other families they start to dislike you when you are HIV+. Even if you where start to dislike you when you are HIV+. Even if you where drinking with a jug, people who are not positive they won’t use it. drinking with a jug, people who are not positive they won’t use it. People who are living with HIV/AIDS, we need to support them People who are living with HIV/AIDS, we need to support them so that they wont think about their status. When someone is so that they wont think about their status. When someone is HIV/AIDS I urge people not to make fun of people who are HIV+HIV/AIDS I urge people not to make fun of people who are HIV+

Living in SilenceLiving in Silence

Stigma leading to no disclosure until when Stigma leading to no disclosure until when close to dyingclose to dying

Its very difficult to talk openly about HIV+ Its very difficult to talk openly about HIV+ statusstatus

Many essays tell stories about strong Many essays tell stories about strong emotional reaction and fatalistic behaviour emotional reaction and fatalistic behaviour amongst PLWHA, from deliberate amongst PLWHA, from deliberate intentions to spread the virus to suicideintentions to spread the virus to suicide

Inclined to ActionInclined to Action

Need for more care and supportNeed for more care and support Need for change of individual sexual Need for change of individual sexual

practicespractices Only a few (high income) students seem to Only a few (high income) students seem to

acknowledge a need to fight contextual acknowledge a need to fight contextual aspects such as povertyaspects such as poverty

Comm.ChallengesComm.Challenges

1.1. To tackle issues as stigma, stigma and stigmaTo tackle issues as stigma, stigma and stigma

2.2. To tackle issues as fear and denialTo tackle issues as fear and denial

3.3. To address underlying social, cultural, political, To address underlying social, cultural, political, economic and spiritual contextseconomic and spiritual contexts

4.4. To build trust using media languageTo build trust using media language

5. 5. To ensure joint efforts at community level To ensure joint efforts at community level

Communication Disconnect (1)Communication Disconnect (1)

Discrepancy between immensity of Discrepancy between immensity of HIV/AIDS problem and the thundering HIV/AIDS problem and the thundering silence about it. silence about it.

Its about stigma >>> invisibility of peopleIts about stigma >>> invisibility of people Absence of voiceAbsence of voice

Communication Challenge (1)Communication Challenge (1)

Rights, Representation and Public SphereRights, Representation and Public Sphere Right to Communicate: VOICERight to Communicate: VOICE Visibility in the media and other public Visibility in the media and other public

spheresspheres Understand better the mechanisms of today’s Understand better the mechanisms of today’s

public spherepublic sphere Create a speech environment on HIV/AIDSCreate a speech environment on HIV/AIDS

Communication Disconnect (2)Communication Disconnect (2)

A lack of connection between the media A lack of connection between the media language used (genres, aesthetics, format, language used (genres, aesthetics, format, language) and the culturally appropriate language) and the culturally appropriate and lived experiences of the audiencesand lived experiences of the audiences

Communication Challenge (2)Communication Challenge (2)

Popular Culture and Cultural CitizenshipPopular Culture and Cultural Citizenship Produce culturally appropriate contentProduce culturally appropriate content Enhance cultural citizenship to support citizen Enhance cultural citizenship to support citizen

identityidentity

Communication Disconnect (3)Communication Disconnect (3)

The immense contradiction between The immense contradiction between solutions proposed in campaigns and the solutions proposed in campaigns and the actual need for much more far-reaching actual need for much more far-reaching solutionssolutions

Communication Challenge (3)Communication Challenge (3)

Power Struggles and Change ProcessesPower Struggles and Change Processes Address unequal power relationsAddress unequal power relations Broaden the problem definition from a health Broaden the problem definition from a health

problem to a development problemproblem to a development problem

Communicate for social change…!Communicate for social change…!

Implications for policy and Implications for policy and practicepractice

From BCC to CFSC implies increased From BCC to CFSC implies increased focus on social critique and social actionfocus on social critique and social action

Civil society driven media platforms?Civil society driven media platforms? Accountability: downward and upwardAccountability: downward and upward

How can youth engage further? How can youth engage further? Participatiion, public debate..Participatiion, public debate..