STIGMA AND GLOBAL HEALTH RESEARCH PROGRAM
RELEASE DATE: June 20, 2002
RFA: TW-03-001
PARTICIPATING INSTITUTES AND CENTERS (ICs):
Fogarty International Center (FIC)
(http://www.nih.gov/fic/)
Health Research Services Administration (HRSA)
(http://www.hrsa.gov)
National Center on Minority Health and Health Disparities (NCHMD)
(http://ncmhd.nih.gov/)
National Human Genome Research Institute (NHGRI)
(http://www.nhgri.nih.gov/)
National Institute of Allergy and Infectious Diseases (NIAID)
(http://www.niaid.nih.gov/default.htm)
National Institute of Dental and Craniofacial Research (NIDCR)
(http://www.nidcr.nih.gov/)
National Institute of Mental Health (NIMH)
(http://www.nimh.nih.gov/)
National Institute on Alcohol Abuse and Alcoholism (NIAAA)
(http://www.niaaa.nih.gov/)
National Institute on Drug Abuse (NIDA)
(http://www.nida.nih.gov/)
Office of AIDS Research (OAR)/ NIH Office of the Director
(http://www.nih.gov/od/oar/)
Office of Behavioral and Social Science Research (OBSSR)/ NIH
Office of the Director
(http://obssr.od.nih.gov/)
Office of Research on Women's Health (ORWH)/ NIH Office of the Director
(http://www4.od.nih.gov/orwh/)
LETTER OF INTENT RECEIPT DATE: October 14, 2002
APPLICATION RECEIPT DATE: November 14, 2002
THIS RFA CONTAINS THE FOLLOWING INFORMATION
o Purpose of this RFA
o Research Objectives
o Mechanisms of Support
o Funds Available
o Eligible Institutions
o Individuals Eligible to Become Principal Investigators
o Special Requirements
o Where to Send Inquiries
o Letter of Intent
o Submitting an Application
o Peer Review Process
o Review Criteria
o Receipt and Review Schedule
o Award Criteria
o Required Federal Citations
PURPOSE OF THIS RFA
The purpose of this initiative is to
stimulate investigator-initiated research
on the role of stigma in health, and on
how to intervene to
prevent or mitigate its negative effects
on the health and welfare of individuals, groups and
societies world-wide. Collaborative
interdisciplinary applications are
particularly encouraged. The following Institutes
and Centers from the U.S. Department of Health and Human
Services (DHHS): the Health Research Services Administration (
HRSA), the NIH including: the Fogarty International Center (FIC), National
Center on Minority Health and Health Disparities (NCHMD),
National Institute of Neurological Disorders and Stroke
NINDS), National Human
Genome Research Institute (NHGRI), National Institute of
Alcohol Abuse and Alcoholism (NIAAA), National Institute
of Allergy and Infectious
Diseases (NIAID), National Institute of Dental and
Craniofacial Research (NIDCR), National Institute of Drug
Abuse (NIDA), National Institute of Mental Health (NIMH),
Office of AIDS Research,
Office of Behavioral and Social Science Research (OBSSR),
Office of Research on Women's Health (ORWH); and the Canadian
Institutes of Health
Research (CIHR), seek domestic and international applications
which address stigma-related issues, across a variety of global
public health
problems, among individuals and in society. Relevant issues
include:
1. How stigma and its consequences, such as discrimination
affect health (e.g. through physical and psychological abuse,
denial of economic
opportunities, poor provision and seeking of health care);
2. How stigma associated with specific health conditions
interacts with stigma associated with individual or group
characteristics (such as gender, race, religion, sexual
orientation and nationality);
3. How to prevent and mitigate the negative effects of
stigma and
4. Discrimination on health and health care;
5. Development of quantitative and qualitative methods and
techniques to investigate, measure and analyze the extent,
degree and effects of stigma and
6. The effectiveness of current and new interventions;
7. Examination of the cultural, social, political and economic
dimensions of stigma and its manifestations;
8. Methods and safeguards to ensure safety of vulnerable
research subjects.
Such research, which may range from basic to clinical and
operational, requires expertise across a broad range of
bio-medical, social and behavioral science fields. The participants
in this RFA therefore encourage interdisciplinary, domestic and
international collaboration to build the scientific foundation of
stigma research related to health. Meritorious applications must
also be relevant to the mission and interests of one or more of
the participating Institutes or Centers.
This RFA is based on recommendations developed in conjunction with
the NIH sponsored International Conference on Stigma and Global
Health: Developing a Research Agenda, September 5-7, 2001, Bethesda,
MD. Applicants are encouraged to refer to the stigma conference website
(www.stigmaconference.nih.gov) for extensive information related to
the topic of this RFA including the agenda with links to speaker
abstracts, commissioned background papers and a video-cast of the conference.
RESEARCH OBJECTIVES
The objectives of this initiative are to encourage research across a
variety of scientific disciplines including the biomedical, social
and behavioral sciences, to elucidate the etiology of stigma in
relation to public health as well as to develop and test interventions
to mitigate the negative effects of stigma on health outcomes.
Studies may examine stigma and public health in domestic, international
and cross-cultural contexts, with an emphasis on studies that are
relevant to global health issues. Applicants are encouraged to
undertake interdisciplinary studies, where possible, using behavioral,
social and biomedical science approaches.
The initiative is also designed to attract investigators across a
broad range of biomedical and non-biomedical fields, including but
not limited to anthropology, epidemiology, infectious and non-infectious
diseases, geography, sociology, psychology, psychiatry, neuroscience,
law, genetics, ethics, economics, political science, biostatistics,
evaluation and others.
Background
According to a seminal work by sociologist Erving Goffman (1963
"Stigma: Notes on the Management of Spoiled Identity") a stigma is
an attribute that — according to prevailing societal attitudes - is
deeply discrediting and reduces a person to one who is in some way
tainted and can therefore be denigrated. Individuals may internalize
the stigmas applied to them by others. Researchers, therefore,
differentiate between the "felt" stigma a person perceives and "enacted"
stigma, which refers to actions upon the individual expressed through
various forms of discrimination.
Stigma, when applied to health conditions, is a globally pervasive
problem threatening psychological and physical health at the individual
and group level. Stigma helps to perpetuate health inequalities.
The poor treatment of an individual because of the stigma of the
condition itself, or of another aspect of that individual's being or
position in society (such as gender, race, sexual orientation or
socio-economic status), leads to poor outcomes and perpetuates other
adverse health, social and economic consequences for the individual,
their families and communities. Felt stigma prevents
individuals from coming forward for timely diagnosis and treatment and
impairs their ability for self-care, to access care or to participate
in research studies designed to find solutions. Enacted stigma
perpetuates public health problems and prevents societies from
appropriately addressing health care issues at the community and national
levels with the appropriate delivery, funding and support of research,
health care services and legal and educational interventions.
Many diseases and conditions, which persist or worsen if left untreated,
affect a person's ability to fulfill necessary, culturally expected and
economically productive roles in society. The burden of their continued
care may then fall upon families and communities lacking adequate resources
or support. For this reason, stigma and discrimination may greatly magnify
the social and economic, as well as personal consequences of such diseases
and conditions, often well beyond their prevalence in the population.
In the case of infectious disease (for example, sexually transmitted diseases),
stigma and discrimination related to the mode of transmission and preexisting
attitudes towards some affected individuals can lead to fear of disclosure,
inadequate and inappropriate treatment of all affected, and the further spread
of a disease which might otherwise be contained. The effects on individuals,
families, communities and nations can be devastating, as illustrated by the
HIV/AIDS epidemic, particularly in Sub-Saharan Africa.
The disability and loss of productivity due to treatable mental illnesses
and neurological disorders (such as depression, schizophrenia, epilepsy,
movement disorders, substance abuse disorders, mental retardation and cerebral
palsy), when inadequately treated due to stigma and discrimination, contribute
greatly to the burden of illness on societies around the world (for more
information please see the "World Health report 2001: Mental Health-New
Understanding, New Hope" and the Institute of Medicine report on "Neurological,
Psychiatric and Developmental Disorders: meeting the Challenge
of the Developing World", 2001, available at
http://books.nap.edu/books/0309071925/html/).
The same is true of other physical and developmental health conditions
(including those which are disfiguring such as craniofacial disorders, and
those that are physically disabling, such as spinal cord injury leading to
paralysis) which if treated, mitigated or accommodated need not serve as
barriers to full and productive lives. Yet stigma and discrimination often
prevent the necessary societal action to treat, research and accommodate such
conditions. Other public health problems, such as domestic violence and abuse,
when ignored because of the associated stigma, perpetuate the same problems in
individuals and across generations, along with other, often stigmatized
health problems such as mental illnesses,
drug and alcohol addiction and abuse.
To have an impact, research on stigma-related health problems requires
the participation of investigators across a broad range of biomedical
and non-biomedical fields. Interdisciplinary studies are needed which
use current behavioral, social and biomedical approaches to elucidate the
etiology of stigma in relation to health as well as develop and test
interventions to mitigate the negative effects of stigma on health outcomes.
Finally, researchers must better understand the policy-making process so
they can work to ensure that research results have an impact.
Understanding the causes, consequences and effective interventions for
stigma-related issues and problems has the potential to significantly
improve treatment and care particularly for public health problems of
global importance. In the same way that the effects of stigma magnify
the personal and societal problems related to such diseases and disorders,
preventing or mitigating stigma and its effects can profoundly improve the
lives of individuals and, by extension, their families and the larger society.
The public health community has demonstrated increasing awareness of the
role of stigma in many diseases and disorders. Recent conferences have
focused on the role of stigma in mental illnesses including depression
and schizophrenia, HIV/AIDS and epilepsy. These conferences were convened
by organizations including the Health and Development Networks with UNAIDS,
the United States Substance Abuse and Mental Health Services Administration,
the World Health Organization, and the World Psychiatric Association.
This RFA is informed as well by the recent U.S. National Institutes of
Health International Conference on Stigma and Global Health: Developing
a Research Agenda (www.stigmaconference.nih.gov). This conference was
convened by the Fogarty International Center of the NIH in partnership
with various other NIH institutes and offices along with other U.S.
agencies, and domestic and international organizations. More than 250
participants from 30 nations, including 23 developing countries, discussed
stigma associated with a variety of illnesses and conditions including
HIV/AIDS, mental health, epilepsy, physical anomalies, alcohol and drug
abuse, physical
and sexual abuse, genetics, race and gender. Scientists and other experts
encompassing the health, social and behavioral
sciences, media, law, politics and economics focused on stigma as it
relates to global public health. They examined both what is known about
the causes and consequences of stigma and what can be done to prevent or
minimize its negative effects on the health of individuals and societies.
One outcome of the conference was a set of research recommendations for
stigma and its relationship to a variety of global public health problems.
The recommendations include research to:
o Further elucidate the etiology of stigma;
o Investigate the health consequences of stigma;
o Develop methodology for studying stigma with respect to health;
o Evaluate and develop new effective interventions to deal with stigma;
o Lay the groundwork for guidelines on ethical conduct of studies on
o stigmatized individuals and groups who may face further negative effects,
including physical violence or social isolation, because of their
participation in such studies.
Research Topics
Studies of stigma are encouraged across physical and mental health
conditions (including addictions), care settings, groups, outcomes and
interventions, including research on the social, economic, cultural and
political factors in both creating and intervening in stigmatization of
health conditions. This RFA encourages interdisciplinary studies throughout
whenever appropriate to the research question. Ethnographic and other areas
of social science research in particular will be necessary to fully understand
the role of stigma within a given society
or group and to design appropriate interventions. The ways stigma is applied,
perceived and measured in other cultures are relevant avenues of inquiry and
ethnographic and comparative studies are encouraged alone or as components
of other studies.
Other relevant research topics include but are not limited to the following:
1. The role of stigma in specific public health problems, diseases or
disorders; and its implications for issues from etiology to interventions
and public policy;
2. The implications of stigma for access to care and treatment, and how
stigma affects outcomes across health conditions;
3. Systematic studies to determine psychological, social, economic,
cultural and political factors that operate in the creation of stigma and
how they link to stereotypes, discrimination and mistreatment in the
context of health problems and health care systems;
4. Approaches to ensure that medical advances, which can be used to treat
or prevent stigmatized conditions, effectively reach appropriate populations;
5. Development of tools to study and document stigma and its impact on
accurate determination of incidence and prevalence of health conditions;
and to estimate the risk for over- or under-diagnosis as a result of
stigma-related influences;
6. Evaluation of which interventions work for stigma-related health
problems, the characteristics of successful interventions, demonstration
of successful interventions that can be scaled up or generalized to
other stigmatized public health problems and/or to other populations
and cultures;
7. The role of stigma in provision of health care including, quality
and extent of available treatment and care, the quality of the
patient/health care practitioner relationship, the role of the provider's
attitude in perpetuating stigma and the role of stigma in disclosure of
disease status during medical visits;
8. The role of disclosure of disease in an individuals' personal or
professional life and its relationship to perceived stigma;
9. Identification of methods to minimize (or eliminate) the consequences
of stigma/stigmatization on the recognition and diagnosis of health
conditions and on options for treatment and/or rehabilitation;
10.Social, cultural and environmental influences on perceptions of and
reactions to stigma/discrimination among individuals, families and communities;
and on the resources available for coping with or ameliorating its negative
health consequences;
11.The interaction of social systems including gender, culture, politics,
economics and the law in creating stigmas and the examination of the
interplay between different kinds of stigmas as well as the combined
impact on individuals, families, and groups;
12.The involvement of social, political, economic and legal systems in
creating appropriate, effective and culturally sensitive interventions
to combat stigma and the negative effects of stigma;
13.The actual and potential roles of media in creating, disseminating
and intervening in stigma-related attitudes and actions;
14.The relationship between attributions about the causes/etiologies
of particular diseases and disorders and the degree to which those
with, or at risk for, the disorder are stigmatized. For example: does
the public view a disease or disorder as more or less stigmatizing when
it may be associated with a specific genetic predisposition; is this
perception different for different diseases and disorders, for example
diseases such as cancer, neurological
and neuropsychiatric disorders such as epilepsy, movement disorders,
schizophrenia and bipolar disorder, or conditions in which there is a
clear behavioral component (e.g. drug abuse, obesity)?
Specific Research Areas of Interest to Stigma and Global Health RFA Sponsors:
The FIC is interested in applications on stigma and health topics relevant
to and involving low to middle income countries of the developing world.
Special consideration will be given to meritorious interdisciplinary
applications from, or in collaboration with, developing country investigators.
NCMHD would like to encourage applications that have minority health or
health disparity focus.
NIAAA is interested in supporting applications that address the
association of stigma with the detection, prevention and treatment of
alcohol use disorders. Of particular interest are applications that address
alcohol abuse and addiction in populations that bear a greater burden of
stigma (i.e. pregnant women) and alcohol related birth defects (such as
Fetal Alcohol Syndrome). Applications that address the stigma associated
with alcohol and other health conditions, such as HIV AIDS, will also be
considered. Studies on the role of stigma in the development of
alcohol-related policies and the delivery of services are also encouraged.
NIAID encourages applications addressing the impact of stigma on control
and treatment of infectious diseases. Of particular interest is research
to develop and evaluate strategies to prevent or minimize the negative
physical, cognitive, and social consequences of HIV infection, including
the stigmatization of persons with or at risk for HIV infection. NIAID is
particularly interested in applications with an international/developing
country focus.
NIDA is interested in supporting applications that address the causes and
consequences of stigma in drug abusing and addicted individuals and
populations, including the impact on stigma on the availability and provision
of treatment and prevention services. Studies on interventions directed at
reducing stigma in these populations are encouraged as well.
NIDCR is interested in supporting research to identify, prevent, or
ameliorate consequences of stigma related to socially perceived variations
or changes in orofacial appearance or function. Such changes may, for example,
result from orofacial injuries or from congenital craniofacial anomalies,
such as cleft lip and palate, disfiguring infectious diseases such as noma,
oral facial cancers or ablative cancer surgeries affecting orofacial
structures, edentulousness, malocclusion, or other orofacial diseases/
conditions.
NHGRI would like to encourage applications on stigma-related issues
related to genetic disorders.
NIMH encourages research on stigma related to neuropsychiatric disorders
and research on AIDS stigma and prevention of HIV transmission and its
consequences including descriptive cross-sectional studies of stigma,
longitudinal research studies and intervention studies.
NINDS encourages research on stigma related problems across the spectrum
of neurological disorders to reduce the burden of neurological disease
borne by every age group and segment of society all over the world.
OAR is interested in supporting applications that address the role of
stigma and discrimination in the HIV/AIDS pandemic. This includes basic
research on the causes and consequences of HIV/AIDS-associated stigma and
discrimination, as well as intervention research to ameliorate them.
ORWH would like to encourage applications, across the spectrum of
possible research topics, which include in the research design scientific
analyses aimed at delineating sex/gender differences. The results of such
analyses are expected to be particularly important when designing and
testing appropriate interventions to have the best possible outcomes.
The HIV/AIDS Bureau, HRSA, is interested in supporting the evaluation of
interventions to reduce stigma as a barrier to the care and treatment of
those living with HIV/AIDS. Examples of potential interventions include
training of health care providers, community involvement in HIV program
planning, and the inclusion of people living with HIV/AIDS in program
planning and as staff or volunteers in care and support programs.
Programs that tie decreases in stigma to increased access to care and
improved quality of care are of particular interest.
The Institute of Neurosciences, Mental Health and Addiction (INMHA) of
the Canadian Institutes of Health Research (CIHR) is interested in
supporting applications from Canadians or, in collaboration with the Canadian
International Development Research Center (IDRC), in co-sponsoring proposals
originating in and responding to priorities of developing countries and with
a Canadian component. Eligible applications for CIHR/INMHA include those
dealing with research on stigma related to neurological disorders, mental
illnesses and addictions which are aimed at finding innovative, effective
and evidence-based means to reduce discrimination, improve access to
services and to raise public awareness through education.
Contact the representatives of the participating Agencies, Institutes or
Centers (ICs) listed in the "Where to Send Inquiries" section of this RFA
or visit individual Agency and IC websites for more information about topics
of interest to each. Additional research questions and other information
of specific interest to individual participating Agencies and ICs in the
context
of this RFA can be found at: http://www.nih.gov/fic/programs/stigma.html.
MECHANISM OF SUPPORT
This RFA will use the National Institutes of Health (NIH) research
project grant (R01) and the developmental/exploratory grant (R21) award
mechanisms. Note that the R21 mechanism is specifically intended to
support innovative ideas where preliminary data as evidence of feasibility
are sparse or do not exist. R21 grants are not intended for large-scale
undertakings or to support or supplement ongoing research. Rather,
R21-supported projects are intended to serve as a basis for planning and
strengthening future research project grant applications (R01).
This RFA also uses just-in-time concepts and the modular grant format
(see
http://grants.nih.gov/grants/funding/modular/modular.htm). Specifically,
if you are submitting an application with direct costs in each year of
$250,000 or less, use the modular format (modules of $25,000). Otherwise
follow the instructions for non-modular research grant applications.
Applications submitted by foreign institutions can request facilities and
administrative (F&A) costs up to a maximum of eight percent. Please see
the web site http://grants.nih.gov/grants/guide/notice-files/NOT-OD-01-028.html
for more information on allowable F&A costs for foreign grants and domestic
grants with foreign components.
This RFA is issued for fiscal year (FY) 2003 and the anticipated award start
date is July 2003. Applications submitted in response to this RFA may
have a project period of up to five years for R01 and up to three years
for R21 grant applications. As an applicant you will be solely responsible
for planning, directing, and executing the proposed project.
At this time, it is not known if this RFA will be reissued. Any future
unsolicited competing continuation applications based on this project may
compete with all NIH investigator-initiated applications and be reviewed
according to the customary peer review procedures.
FUNDS AVAILABLE
The participating ICs intend to commit approximately $2.5 million in FY
2003 to fund up to 12 new competitive grants in response to this RFA.
R21 grant applicants may request a project period of up to three years
with a total direct cost of $100,000 per year.
R01 grant applicants may request a project period of up to five years. An
applicant may request a budget up to
1) $500,000 direct costs per year for applications in which comparative
or intervention studies at two or more international sites are planned,
and which involve an international team of investigators. No one site
may be allocated more that half the budget.
2) $200,000 direct costs per year for all other projects (i.e. those that
will take place only in a single country, do not propose comparative or
intervention studies, do not involve an international collaboration).
Because the nature and scope of the proposed research will vary from
application to application, it is anticipated that the size and duration
of each award will also vary, with multidisciplinary collaborative,
international |