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ICT AND AIDS LITERACY
a challenge for information professionals in India
Maitrayee Ghosh
Presented By
Dibesh Deb Barma
Roll. No. 07808002
M.Phil. Planning & Development
Indian Institute of Technology
Background & Context
 India society is at a high risk
 Rural area population are ignore or very less &
proper information about HIV/AIDS
 Educating rural and illiterate masses is a
challenge because there are many major
languages and hundreds of different dialects.
 India’s diversity – a challenge in adopting
strategies that are socially and culturally
appropriate.
AIIMS( All India Institute of Medical
Science) study on Indian AIDS situation:
 Indians are more vulnerable to AIDS.
 Lower immunity to the virus – due to genetic cause.
 More likely to contract disease than people in other
countries.
The Indian National AIDS Control Organization (NACO)
estimates that 2.5 million people were living with HIV in
2007. The spread of the epidemic in rural areas presents a
need to disseminate HIV/AIDS related knowledge for health
protection rather than waiting for knowledge to follow the
appearance of the disease in communities.
Health literacy and HIV/AIDS
Health Information Literacy is “ the set of knowledge and
skills needed to recognize a health information need
identify likely information sources in all formats, and use
them to retrieve relevant information analyze, understand
and synthesize the quality and content of information and
its appropriateness to a specific situation; and, to apply the
information in making health decisions with an aim toward
improved health condition.”
(www.mlanet.org/resources/healthlit/define.html)
3 levels of health information literacy
 Functional health literacy: represents the cognitive and social
skills which determine the motivation and ability of
individuals and communities to gain access to, understand,
and use information in ways which promote and maintain
good health.
 Interactive health literacy: focuses on personal and social
skills development, such as self-confidence, negotiation, and
assertiveness, and the resulting individual health-related
behaviors associated with these attributes.
 Critical health literacy: refers to the development of specific
higher level cognitive & communication skills such as
accurately interpreting & evaluating media reports,
navigating health care systems & the capacity to effectively
access & use health information.
Joint health information literacies in the
context of HIV/AIDS
 New York Online Access to Health (NAOH
http://www.noah-health.org/) is a collaboration of a
number of New York libraries, including the New York
Public Library, provides full-text HIV/AIDS related
information to consumers.
 Consumer Health information network (CHIN) project at
Massachusetts - a collaboration of a hospital and six public
libraries in the surrounding community.
 Philadelphia's AIDS Information Network have staff
training program and cooperating with local AIDS service
agencies, also acting as referral centre.
Contd..
 Visual AIDS is a project working very closely with New
York public libraries -
http://www.the body.com/visualaids/about.html and
increasing public awareness of AIDS through visual arts.
 Detroit Community AIDS Library (DCAL) is a partnership
of Academic health sciences, medical hospital and public
libraries.
 Kenya National Library Service (KNLS) introduced
HIV/AIDS awareness program in response to the
Government’s appeal for multi-sectoral approach to combat
HIV/AIDS.
Indian initiatives to disseminate HIV/AIDS
information
 Aids-India Org (www.aids-india.org/index.htm).
 Aids India e-Forum
(http://health.groups.yahoo.com/group/AIDS INDIA)
 The project, known as Freedom HIV/AIDS, uses
information, education & communication methodologies to
educate people in India about HIV/ADIS & was launched
on World Aids Day (December 1st) 2005.
 Heroes Project (www.heroesprojectindia.org/index1.html).
It is a public education initiative launched in July 2004
which works with media organisations & key popular
figures. The aim of the project is to reduce stigma &
discrimination by educating the public & advocating a
change in policies
Contd..
 Mobile games on HIV/AIDS awareness
(www.freedomhivaids.in/#).
 Saadhan HIV/AIDS Helpline : The International non profit
group Population Services International (PSI) has been
running the helpline for HIV/AIDS prevention in Mumbai,
since 2002.
The system contains a local ‘lingo’ list that enable
counsellors to access slang & vernacular terminology that
client may use.
E learning through libraries
E learning modules
 General information - difference between HIV & AIDS
 Living with HIV/AIDS – why it is imperative to be tested,
testing process & where to get tested
 How to survive with HIV/AIDS, understand the intricacies of
the HIV virus & how to live a healthier life with it.
The challenges
 The lack of knowledge of AIDS, its modes of transmission
and ways to avoid infection is a major challenge. Limited
information literacy increase demand for more information
processing to add value to information and services to
promote information awareness, accessibility and usability.
 Educating people about HIV/AIDS and prevention is not a
simple rather complicated task, as India has many major
languages and hundreds of different dialects.
 The dynamics of the epidemic raise the need to keep abreast
with new developments hence the need to actively collect,
synthesize and disseminate information. This is however
constrained by lack of adequate resources (human, financial
and material) to initiate and sustain efforts.
Contd..
 Lack of ICT related training for staff and low levels of
penetration of the infrastructure and supporting
environment necessary to effectively use ICTs.
 The multiplicity of demand for consistent, relevant and
timely information on HIV/AIDS and existence of factors at
various level and in different settings also poses the
challenge of processing and packaging the same information
for different level of users.
 HIV is too complex and too multifaceted for any one
stakeholder to deal with. Meeting the HIV/AIDS information
needs of diverse communities in a vast country like India is a
challenge for information professionals/librarians.
Immerging role of Information Professionals
Information professionals can play dual roles as both
advocates & educators, they can provide services to the
society by helping to access AIDS information not only in
urban setting but also in rural environment. Professionals
serving in different libraries/potential information
dissemination centres are expected to:
 Empower adolescents to protect themselves from HIV
infection.
 Create documentation on the AIDS epidemic using
convergence technologies.
 Make information relevant, realistic and acceptable to the
local community.
 Form partnerships with marginalized community groups,
such as AIDS orphans, widows and the aged.
 Reduce the stigma of HIV/AIDS.
Literature on the role of librarians in disseminating
health care information
The interactive online services will provide a service to
those prefer privacy, but human interaction of the librarian
could become an even more essential piece in the health
information seeking process.
A study carried out by NCLIS (US National Commission of
Libraries and Information Science on new roles for libraries
in HIVAIDS information dissemination in Africa makes
three recommendations:
 Libraries’ role in disseminating HIV/AIDS information is
strongest when they establish partnerships with other
organizations already involved in dissemination and
education activities.
Contd..
 Libraries in Africa should expand the scope of
information resources they collect and distribute to
include sources outside the role of traditional libraries,
including taking a leadership role in using ICTs for
sharing digital materials, and providing information in
formats that are accessible & interesting to young adults
who are making decisions about their own sexual
behaviour.
 An opportunity for African librarians now exists to
redefine their traditional roles and take a strong lead
in the dissemination of HIV/AIDS information
report available in
http://www.nclis.gov/news/pressrelease/pr2005/2005-
12LibrariesAfrica.pdf)
Suggestions & Recommendations
There are insufficient number of libraries and information
centres to meet the needs of culturally and linguistically
diverse population in India.
The Health Resource Center/ Knowledge centres should be
created to provide preventive health care information to
the general public, specially women who are responsible for
the health care of the entire family.
Public libraries should work in closely with medical
libraries and NGOs and develop health information
website for communicating HIV/AIDS information, and
have a national information infrastructure to bring
consumer health information to the broadest possible
female population in the country.
Contd..
Governments in India should take libraries and provision
of HIV/AIDS information seriously, hence should avail
reasonable amount of money to libraries, specially, public
libraries/ Knowledge Centres to develop HIV/AIDS
collection. Prevention should be a key area of focus and
prime concern that can be brought about by awareness.
At a time when infection rates among women are rising
because they are powerless, ordinary female population
must be sensitize to change their behaviour. Reduce the
risk through awareness should be priority if India is not to
face an epidemic.
The Indian websites providing HIV/AIDS information
needs to be customized.
Conclusion
India has an urgent situation in terms of treatment but if
the preventive aspects are ignored, then we are heading
towards catastrophe in coming years, which will use up our
resources. There is a need for strong advocacy and political
support at the national level. Educating the users in
libraries how to access health information on the internet
has the potential to give them knowledge to maintain more
healthy life styles, provide them with reliable information
about their problems and make them aware of possible
treatment options. One of the answers to effectively combat
the HIV/AIDS epidemic is the creation of an infrastructure
that simultaneously develops healthcare networks,
education programs, and community participation.
THANK YOU FOR YOUR PATIENCE

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ICT and AIDS Literacy

  • 1. ICT AND AIDS LITERACY a challenge for information professionals in India Maitrayee Ghosh Presented By Dibesh Deb Barma Roll. No. 07808002 M.Phil. Planning & Development Indian Institute of Technology
  • 2. Background & Context  India society is at a high risk  Rural area population are ignore or very less & proper information about HIV/AIDS  Educating rural and illiterate masses is a challenge because there are many major languages and hundreds of different dialects.  India’s diversity – a challenge in adopting strategies that are socially and culturally appropriate.
  • 3. AIIMS( All India Institute of Medical Science) study on Indian AIDS situation:  Indians are more vulnerable to AIDS.  Lower immunity to the virus – due to genetic cause.  More likely to contract disease than people in other countries. The Indian National AIDS Control Organization (NACO) estimates that 2.5 million people were living with HIV in 2007. The spread of the epidemic in rural areas presents a need to disseminate HIV/AIDS related knowledge for health protection rather than waiting for knowledge to follow the appearance of the disease in communities.
  • 4. Health literacy and HIV/AIDS Health Information Literacy is “ the set of knowledge and skills needed to recognize a health information need identify likely information sources in all formats, and use them to retrieve relevant information analyze, understand and synthesize the quality and content of information and its appropriateness to a specific situation; and, to apply the information in making health decisions with an aim toward improved health condition.” (www.mlanet.org/resources/healthlit/define.html)
  • 5. 3 levels of health information literacy  Functional health literacy: represents the cognitive and social skills which determine the motivation and ability of individuals and communities to gain access to, understand, and use information in ways which promote and maintain good health.  Interactive health literacy: focuses on personal and social skills development, such as self-confidence, negotiation, and assertiveness, and the resulting individual health-related behaviors associated with these attributes.  Critical health literacy: refers to the development of specific higher level cognitive & communication skills such as accurately interpreting & evaluating media reports, navigating health care systems & the capacity to effectively access & use health information.
  • 6. Joint health information literacies in the context of HIV/AIDS  New York Online Access to Health (NAOH http://www.noah-health.org/) is a collaboration of a number of New York libraries, including the New York Public Library, provides full-text HIV/AIDS related information to consumers.  Consumer Health information network (CHIN) project at Massachusetts - a collaboration of a hospital and six public libraries in the surrounding community.  Philadelphia's AIDS Information Network have staff training program and cooperating with local AIDS service agencies, also acting as referral centre.
  • 7. Contd..  Visual AIDS is a project working very closely with New York public libraries - http://www.the body.com/visualaids/about.html and increasing public awareness of AIDS through visual arts.  Detroit Community AIDS Library (DCAL) is a partnership of Academic health sciences, medical hospital and public libraries.  Kenya National Library Service (KNLS) introduced HIV/AIDS awareness program in response to the Government’s appeal for multi-sectoral approach to combat HIV/AIDS.
  • 8. Indian initiatives to disseminate HIV/AIDS information  Aids-India Org (www.aids-india.org/index.htm).  Aids India e-Forum (http://health.groups.yahoo.com/group/AIDS INDIA)  The project, known as Freedom HIV/AIDS, uses information, education & communication methodologies to educate people in India about HIV/ADIS & was launched on World Aids Day (December 1st) 2005.  Heroes Project (www.heroesprojectindia.org/index1.html). It is a public education initiative launched in July 2004 which works with media organisations & key popular figures. The aim of the project is to reduce stigma & discrimination by educating the public & advocating a change in policies
  • 9. Contd..  Mobile games on HIV/AIDS awareness (www.freedomhivaids.in/#).  Saadhan HIV/AIDS Helpline : The International non profit group Population Services International (PSI) has been running the helpline for HIV/AIDS prevention in Mumbai, since 2002. The system contains a local ‘lingo’ list that enable counsellors to access slang & vernacular terminology that client may use.
  • 10. E learning through libraries E learning modules  General information - difference between HIV & AIDS  Living with HIV/AIDS – why it is imperative to be tested, testing process & where to get tested  How to survive with HIV/AIDS, understand the intricacies of the HIV virus & how to live a healthier life with it.
  • 11. The challenges  The lack of knowledge of AIDS, its modes of transmission and ways to avoid infection is a major challenge. Limited information literacy increase demand for more information processing to add value to information and services to promote information awareness, accessibility and usability.  Educating people about HIV/AIDS and prevention is not a simple rather complicated task, as India has many major languages and hundreds of different dialects.  The dynamics of the epidemic raise the need to keep abreast with new developments hence the need to actively collect, synthesize and disseminate information. This is however constrained by lack of adequate resources (human, financial and material) to initiate and sustain efforts.
  • 12. Contd..  Lack of ICT related training for staff and low levels of penetration of the infrastructure and supporting environment necessary to effectively use ICTs.  The multiplicity of demand for consistent, relevant and timely information on HIV/AIDS and existence of factors at various level and in different settings also poses the challenge of processing and packaging the same information for different level of users.  HIV is too complex and too multifaceted for any one stakeholder to deal with. Meeting the HIV/AIDS information needs of diverse communities in a vast country like India is a challenge for information professionals/librarians.
  • 13. Immerging role of Information Professionals Information professionals can play dual roles as both advocates & educators, they can provide services to the society by helping to access AIDS information not only in urban setting but also in rural environment. Professionals serving in different libraries/potential information dissemination centres are expected to:  Empower adolescents to protect themselves from HIV infection.  Create documentation on the AIDS epidemic using convergence technologies.  Make information relevant, realistic and acceptable to the local community.  Form partnerships with marginalized community groups, such as AIDS orphans, widows and the aged.  Reduce the stigma of HIV/AIDS.
  • 14. Literature on the role of librarians in disseminating health care information The interactive online services will provide a service to those prefer privacy, but human interaction of the librarian could become an even more essential piece in the health information seeking process. A study carried out by NCLIS (US National Commission of Libraries and Information Science on new roles for libraries in HIVAIDS information dissemination in Africa makes three recommendations:  Libraries’ role in disseminating HIV/AIDS information is strongest when they establish partnerships with other organizations already involved in dissemination and education activities.
  • 15. Contd..  Libraries in Africa should expand the scope of information resources they collect and distribute to include sources outside the role of traditional libraries, including taking a leadership role in using ICTs for sharing digital materials, and providing information in formats that are accessible & interesting to young adults who are making decisions about their own sexual behaviour.  An opportunity for African librarians now exists to redefine their traditional roles and take a strong lead in the dissemination of HIV/AIDS information report available in http://www.nclis.gov/news/pressrelease/pr2005/2005- 12LibrariesAfrica.pdf)
  • 16. Suggestions & Recommendations There are insufficient number of libraries and information centres to meet the needs of culturally and linguistically diverse population in India. The Health Resource Center/ Knowledge centres should be created to provide preventive health care information to the general public, specially women who are responsible for the health care of the entire family. Public libraries should work in closely with medical libraries and NGOs and develop health information website for communicating HIV/AIDS information, and have a national information infrastructure to bring consumer health information to the broadest possible female population in the country.
  • 17. Contd.. Governments in India should take libraries and provision of HIV/AIDS information seriously, hence should avail reasonable amount of money to libraries, specially, public libraries/ Knowledge Centres to develop HIV/AIDS collection. Prevention should be a key area of focus and prime concern that can be brought about by awareness. At a time when infection rates among women are rising because they are powerless, ordinary female population must be sensitize to change their behaviour. Reduce the risk through awareness should be priority if India is not to face an epidemic. The Indian websites providing HIV/AIDS information needs to be customized.
  • 18. Conclusion India has an urgent situation in terms of treatment but if the preventive aspects are ignored, then we are heading towards catastrophe in coming years, which will use up our resources. There is a need for strong advocacy and political support at the national level. Educating the users in libraries how to access health information on the internet has the potential to give them knowledge to maintain more healthy life styles, provide them with reliable information about their problems and make them aware of possible treatment options. One of the answers to effectively combat the HIV/AIDS epidemic is the creation of an infrastructure that simultaneously develops healthcare networks, education programs, and community participation.
  • 19. THANK YOU FOR YOUR PATIENCE