Websites by Name
A Practical Guide to Complementary Therapies for People Living With HIV - www.catie.ca/comp_e.nsf. “The Canadian AIDS Treatment Information Exchange (CATIE) is committed to improving the health and quality of life of all people living with HIV/AIDS”. CATIE's website includes a section entitled A Practical Guide to Complementary Therapies for People Living With HIV. This section includes information about a number of complementary therapies and their uses in HIV/AIDS treatment, information about unconventional therapies, guides for evaluating treatments and choosing practitioners, and numerous resources listed by type of complementary therapy.
Access to End of Life Care: A Community Initiative - www.access2eolcare.org. ACCESS is dedicated to improving end-of-life care services for the ethnically diverse populations of the San Francisco Bay Area. The website includes an extensive bibliography, resource links, and information about outreach services available in the San Francisco Bay area.
Action for Orphans - www.orphans.fxb.org. Association François-Xavier Bagnoud is involved in more than 21 humanitarian action projects in 17 countries and has made children affected and orphaned by AIDS its special focus. The Action for Orphans website contains reports on projects in Africa, a 28-page report on children orphaned by AIDS, stories from the field, a video clip of a 12-year-old's crusade to end the discrimination endured by HIV/AIDS sufferers, and more.
Active Training - www.activetraining.com. This website includes training ideas, tips, and suggestions from Mel Silberman, as well as a list of available resource materials.
AEGIS: AIDS Education Global Information System - www.aegis.com. AEGIS is the largest HIV/AIDS knowledgebase in the world. Information is organized by key topics, fact sheets, news services, a law library, publications, reference tools, and ways to connect with others. AEGIS includes an extensive and indexed list of linked websites.
AIDS Action - www.aidsaction.com. National AIDS advocacy and public policy organization. Web site provides comprehensive policy and legislative advocacy resources and information related to AIDS funding appropriations, healthcare/treatment access, housing, prevention, research, and the Ryan White CARE Act. Also features State of AIDS Online Discussion Board.
AIDS Community Research Initiative of America - www.criany.org/acria.html. "The AIDS Community Research Initiative of America (ACRIA) is a non-profit community-based AIDS research and treatment education center (located in New York, NY). In conjunction with recognized leaders in AIDS research and treatment, primary-care providers, and people living with HIV disease; ACRIA: identifies scientifically promising therapies for AIDS and HIV-related illness, designs and implements studies on these interventions, and submits the findings for publication;
conducts research geared towards the further understanding of HIV disease, treatment, and prevention; and
provides education about AIDS treatments and research to the communities affected by HIV/AIDS." Searching the website for "complementary medicine" yields a number of resources, including a user's guide; a resource guide of books, classes, services, products, and websites; and an ACRIA update that includes an overview of current complementary therapies, a look at complementary therapy at sites around the country, the relationship between complementary medicine and research, and a list of natural remedies for HIV-related maladies.
AIDS Info NYC - www.aidsinfonyc.org. Linked collection of information pages for people living with HIV and AIDS from community-based organizations in New York City.
AIDSinfo - aidsinfo.nih.gov/clinical_trials/. This United States Department of Health and Human Services website includes links to clinical trials utilizing complementary and alternative medicine treatments for HIV-positive patients. Treatments include Reiki, stress management, immune restoration by lipoic acid, treatment of depression with massage in end-of-life AIDS, acupressure, acupuncture, and others.
Alaska Native Knowledge Network - www.ankn.uaf.edu/health.html. ANKN is a clearinghouse for resources related to Alaska Native knowledge and ways of knowing. The URL connects to the section entitled Traditional Health, Medicine, and Healing.
American Academy of Hospice and Palliative Medicine - www.aahpm.org. AAHPM facilitates the personal and professional development of health care clinicians working in palliative medicine. They produce The Primer of Palliative Care , conference tapes, a quarterly newsletter, and a series of self-training modules. Topics include palliative medicine, psychological & spiritual issues, pain & symptom management, and legal decision making. There is an extensive list of links to hospices, clinician resources, general resources, organizations, and web searches.
American Civil Liberties Union, HIV/AIDS Resources - www.aclu.org/issues/aids/hmaids.html. Site contains the latest news and project dockets, relevant books, links to other AIDS-related sites, and a searchable News database.
Americans for Better Care of the Dying - www.abcd-caring.org. ABCD is dedicated to social, professional and policy reform to improve the care system for dying patients and their families. They provide news, a reading room, a bimonthly publication, and an online conference covering end-of-life care.
Asian and Pacific Islander Wellness Center - www.apiwellness.org. This San Francisco organization is primarily focused on education and prevention. They have produced a free, downloadable pamphlet, Clinician's Guide to Working with Asians and Pacific Islanders Living with HIV . They also provide links with API organizations throughout the country.
Association of American Indian Physicians - www.aaip.com. AAIP is dedicated to pursuing excellence in Native American healthcare by promoting education in medical disciplines and honoring traditional Native healing methods. The website has links to many resources and opportunities for Native American patients and healers/physicians, as well as educational resources about HIV/AIDS and other diseases.
Bastyr University AIDS Research Center - www.bastyr.edu/research/buarc. BUARC was established in 1994 under a cooperative grant from the NIH's National Institute of Allergy and Infectious Disease (NIAID) and the National Center on Complementary and Alternative Medicine (NCCAM). BUARC’s mission is to describe forms and patterns of use of complementary & alternative medicine (CAM) for the treatment of HIV/AIDS; screen and evaluate therapies from the NCCAM's program areas of CAM; and provide consultation and support to the medical and research community in the scientific evaluation of CAM therapies. This website includes information on BUARC's latest scientific activities.
Bioethics - eduserv.hscer.washington.edu/bioethics. The University of Washington School of Medicine bioethics website has discussion, case examples, and resource information on ethical issues in Advance Care Planning.
BlackAIDS.org - email@example.com. African American AIDS Policy and Training Institute website.
Bob Pike Group - www.bobpikegroup.com. This website features resources, seminars, and other tools for trainers, including articles on such topics as Dealing with Difficult Participants and 19 Ways to Help Transfer Training.
Brooklyn Legal Services Corp. & Gay Men's Health Crisis - www.bronxlegalservices.org/ProSeTopics/Aids_topics.htm. Facing the future: a legal handbook for parents with HIV disease. New York, NY. This booklet can be ordered from South Brooklyn Legal Services at (718) 237-5546 or from their website.
Canadian Aboriginal AIDS Network - www.caan.ca. A non-profit coalition of individuals and organizations providing leadership, support, and advocacy for aboriginal people living with and affected by HIV/AIDS.
Canadian Hospice Palliative Care Association - www.chpca.net. CHPCA produces the Interdisciplinary Training Program in Palliative Care and HIV/AIDS, available for order on their website.
Caregiver.com: Today’s Caregiver Magazine - www.Caregiver.com. Online caregivers magazine with specific articles on HIV/AIDS.
Caring Connections - www.caringinfo.org. Caring Connections provides free resources on end of life issues.
Caring for Someone with AIDS at Home - www.cdc.gov/hiv/pubs/brochure/careathome.htm. Located on The Centers for Disease Control: Divisions of HIV/AIDS Prevention website, this web page includes information about how to get ready to care for someone at home, giving care, providing emotional support, guarding against infections, children with AIDS, changing symptoms, making final arrangements, places to call for help, and basic information about HIV/AIDS.
Center for the Health Professions - www.futurehealth.ucsf.edu/cnetwork/resources/curricula/diversity.html. Towards Culturally Competent Care: A Toolbox for Teaching Communication Strategies is a 170-page curriculum organized into 11 sections that focus on teaching clinicians to recognize cultural differences in patient interactions and to use specific communication skills to improve patient care. The curriculum can be adapted for sequential one-hour sessions or for day-long seminars. It is available for order on their website.
Center for Traditional Medicine - www.cwis.org/ctm.html. This organization provides clinical training with a focus on indigenous traditional healing, arts and sciences, natural medicine, health, psychology, and environmental studies. It is a non-profit organization with centers in Olympia, Washington, and Yelapa, Mexico. The site offers occasional on-line distance learning courses.
Center to Advance Palliative Care - www.capc.org
. The focus of CAPC is to be a resource to hospitals and health systems interested in developing palliative care programs. They provide extensive information on all aspects of building a program, a sophisticated journal search with links to on-line publications, news updates, and links to a wide range of organizations and resources.
Centers for Disease Control, Global AIDS Program (GAP) - www.cdc.gov/nchstp/od/gap/strategies/4_3_palliative_care.htm. The Global AIDS Program exists to help prevent HIV infection, improve care and support, and build capacity to address the global HIV/AIDS pandemic. GAP provides financial and technical assistance through partnerships with communities, governments, and national and international entities working in resource-constrained countries. Read about GAP's Palliative Care Technical Strategy at the url listed above.
Child Welfare League of America - www.cwla.org/programs/hivaids. HIV permanency planning news. Available on their website.
City of Hope - www.cityofhope.org. The purpose of the City of Hope Pain/Palliative Care Resource Center is to serve as a clearinghouse to disseminate information and resources to assist others in improving the quality of pain management and end of life care. The COHPPRC, established in 1995, is a central source for collecting a variety of materials including pain assessment tools, patient education materials, quality assurance materials, end of life resources, research instruments and other resources.
Educational curricula available to order at this website are numerous and include:
1. Curricula and supportive materials on pain management.
2. Home care Outreach for Palliative Care Education (HOPE) training program.
3. End-of-Life Care Content Guidelines outlines to assist in developing curricula in nine palliative care content areas, including pain management, communication, and caregiver information.
Powerpoint slide sets are also available in many topics, most focus on cancer care.
Complementary/Alternative Health Care and HIV/AIDS: Legal, Ethical, and Policy Issues in Regulation - www.aidslaw.ca/Maincontent/issues/cts/cam/toc.htm. Complemtary/Alternative Health Care and HIV/AIDS: Legal, Ethical, and Policy Issues in Regulation “is the first in a series of papers to be produced by the Canadian HIV/AIDS Legal Network as part of a project on Legal, Ethical and Policy Issues Related to HIV/AIDS Care, Treatment and Support… This paper begins with an overview of some of the available information regarding these medical, social, and personal dimensions of CAM use, drawing upon data from Canada and other comparable settings. With this context in mind, the paper then discusses a number of ethical issues related to the use of complementary and/or alternative health-care practices, based on the four key ethical principles of non-maleficence, beneficence, respect for autonomy, and justice. This evidentiary and ethical analysis leads to a number of conclusions in the areas of research, education/training, and regulation. The last section considers the Canadian legal context for regulating complementary/alternative health-care products and practitioners; the reader can assess whether the current regulatory environment is acceptable in light of the ethical considerations outlined.” The paper is also downloadable on the site as a PDF document. For more information about this publication you may also call the Canadian HIV/AIDS Legal Network
at (514) 397-6828.
Completing a Life - completingalife.msu.edu. This site is a resource for Taking Charge, Finding Comfort and Reaching Closure. It offers an interactive CD-ROM and a website geared towards helping patients and families to learn about the practical, emotional, spiritual, and medical issues regarding advanced illness.
Consumer Health Information Service - hml.org/CHIS. This site is a community service of the Hawaii Medical Library. It includes a very comprehensive glossary of complementary therapies, as well as links to articles, organizations, online databases, specific herbal therapies, and to websites where you can search for CAM practitioners.
Cross-Cultural Health Care Program - www.xculture.org. The mission of CCHCP is to "serve as a bridge between communities and health care institutions to ensure full access to quality health care that is culturally and linguistically appropriate." CCHCP provides cultural competency trainings, interpreter trainings, a library, books, videos and articles, and translation services. Voices of the Community profiles are available online. The communities profiled include Arab, Cambodian, Eritrean, Ethiopian, Lao, Mien, Oromo, Samoan, Somali, South Asian, Soviet Jewish, and Ukranian. Longer booklets can be ordered which include information about Cambodian, Chinese, Filipino, Hmong, Japanese, Lao, and Vietnamese communities.
Cuidados Paliativos, Complexo Hospitalario Xeral-Cies - www.paliativos.com. A Spanish language palliative care hospice site provided by Complexo Hospitalario Xeral-Cies of Vigo, Spain. This site provides a portal to the Spanish language forum which is part of the Inter-Institutional Collaborating Network on End-of-Life Care (IICN). You can search the Growth House database using a Spanish language selection menu from this site.
Department of Pain Medicine and Palliative Care at Beth Israel Medical Center - www.stoppain.org. Clinical Management of Neuropathic Pain: A Problem-Based Interactive Module is a web-based interactive module that provides CME credit on assessing and treating neuropathic pain.
Topics in Pain Management: A Slide Compendium --Downloadable Powerpoint modules with accompanying notes. Topics include:
1. Pathophysiology of Pain
2. Pain Assessment
3. Pain Syndromes
4. Pharmacotherapy of Pain
5. Interventional Approaches to Chronic Pain: Blocks, Stimulators, Pumps
6. Nonpharmacologic Approaches to Pain Management
Diversity Rx - www.diversityrx.org. This site describes its mission as “promoting language and cultural competence to improve the quality of health care for minority, immigrant, and ethnically diverse communities.” The website has information on cultural-competency models and practices, as well as curricula and training programs. A report entitled Multicultural Health Best Practices is also available.
Doc Misha's Chicken Soup Chinese Medicine - www.docmisha.com. This website provides general information about Traditional Chinese Medicine (TCM), a section on TCM and women, and a hepatitis help area (an East-West approach). It also includes the HIV Wellness Center: Living Well with HIV. This section includes information on combining Eastern and Western therapies in treating HIV/AIDS, and other information about using Chinese medicine in treating for HIV, including the immune system. Other sections include recipes and message boards.
Dying Well - www.dyingwell.org. This is the website of Dr. Ira Byock, long time palliative care physician. It includes recommended books, articles, and websites; a discussion guide, The Grief Series , by Cathy Weber; and Landmarks and Developmental Tasks for the End of Life.
Education for Physicians on End-of-Life Care - www.epec.net. EPEC is a training program designed to train physicians on the essential clinical competencies required to provide quality end-of-life care. A handbook and video version of the training are both available, as well as slide sets on many palliative care topics.
End-of-Life Nursing Education Consortium - ELNEC - www.aacn.nche.edu/elnec/curriculum.htm. The ELNEC curriculum has been developed to prepare qualified nurse educators to provide end-of-life education for nursing students and practicing nurses, and to provide resources to facilitate that instruction. These educators in turn will use the curriculum to integrate end-of-life content for students in undergraduate nursing programs, and offer staff development/continuing education programs for clinical nurses who provide end-of-life care.
The nine modules are:
Module 1: Nursing Care at End of Life
Module 2: Pain Management
Module 3: Symptom Management
Module 4: Ethical/Legal Issues
Module 5: Cultural Considerations in EOL Care
Module 6: Communication
Module 7: Grief, Loss, and Bereavement
Module 8: Achieving Quality Care at End of Life
Module 9: Preparation and Care for the Time of Death
End-of-Life Physician Education Resource Center - www.eperc.mcw.edu. This is a repository for high-quality, peer-reviewed educational materials and information about end-of-life issues. Course curricula, teaching modules, and self-study guides are available, as well as instruments for assessment and evaluation.
End-of-Life: Exploring Death in America (NPR Series) - www.npr.org/programs/death. This is the website for the National Public Radio series, Dying in America. It includes transcripts which may be heard, read, or ordered; resource links; and a bibliography. A Readings section includes poetry, essays, and clinical matters; spiritual and religious texts; excerpts from fiction, plays, and scripts; and visual images. There is a section available to add your story or read others' stories on the website
Enhancing Care Initiative (ECI) - www.eci.harvard.edu. The Enhancing Care Initiative is a multidisciplinary, multinational program that aims to enhance the care of people living with HIV/AIDS in resource-scarce countries. It is based on the beliefs that concrete, practical improvements in care for people with HIV can and must be developed, and that these improvements will be most effective when developed and implemented by local experts who understand the challenges and possibilities intrinsic to their regions. The heart of ECI lies in its AIDS Care Teams that are formed by, composed of, and led by people from the countries involved. ECI is coordinated by the Harvard AIDS Institute in collaboration with the François-Xavier Bagnoud Center for Health and Human Rights.
Ethnomed - www.ethnomed.org. This site contains information about cultural beliefs, medical issues, and other related issues pertinent to the health care of recent immigrants to Seattle. Culture specific pages include Amharic, Cambodian, Chinese, Eritrean, Ethiopian, Mexican, Oromo, Somali, Tigrean, and Vietnamese. The site also includes clinical topics, journal articles, immigration, and general information about cross-cultural care.
Evaluation of the Outcomes of EPEC - epec.net/downloads/evalsandoutcomes.pdf. Part of the Education for Physicians on End- of-Life Care Trainer’s Guide, this site provides general information on evaluating palliative care education, with links to assessment tools.
Evaluation Technical Assistance Program - www.mywhatever.com/cifwriter/content/41/pe1137.html. Promoting Excellence in End-of-Life Care is a national program office of the Robert Wood Johnson Foundation. As part of their assistance to grantees who are addressing end-of-life care, they have developed extensive evaluation and measurement resources, with information and downloadable instruments. The website cautions that some instruments may require author permission to copy.
Family Ties Project - www.familytiesproject.org. Facing the future: An introduction to life planning for parents and caregivers. Washington, D.C.: Consortium for Child Welfare. This booklet outlines the various legal options for permanency planning. Some sections are specific to the District of Columbia, but there is a lot of good, readable general information. It can be downloaded from their website.
Foundation for Hospices in Sub-Saharan Africa (FHSSA) - www.fhssa.org. Started in 1999 as a nonprofit foundation, FHSSA has a national board and a growing network of partnered entities seeking to develop resources for African providers. FHSSA actively supports hospices or similar groups in South Africa, Zimbabwe, and Tanzania and has established relationships with other providers in Namibia, Malawi, Zambia, Swaziland, Kenya, and Uganda. The FHSSA homepage will soon be replaced with a full website. To subscribe to a periodic e-newsletter on African hospice work, please send a request to firstname.lastname@example.org; include "subscribe" in the subject line and your e-mail address in the body.
Global AIDS Interfaith Alliance (GAIA) - www.thegaia.org. The Global AIDS Interfaith Alliance was founded in June 2000 to stop the transmission of the HIV virus from mothers to infants in Sub-Saharan Africa. It focuses on infrastructure development and training of prevention educators and personnel to conduct HIV testing and counseling. It also focuses on modifying values, structures, and practices that predispose women and girls to higher infection rates than men, and result in stigmatization of ill persons and public denial.
Global Health Council - www.globalhealth.org. The Global Health Council is the largest membership alliance dedicated to improving the quality of and access to health care worldwide. Its mission is to promote better health around the world by assisting all who work for improvement and equity in global health to secure the information and resources they need to work effectively. The site includes a Key Issues Guide on HIV/AIDS (www.globalhealth.org/issues/hivaids) as well as Notes from the Field.
Glossary of HIV/AIDS-related Terms - www.aidsinfo.nih.gov/ed_resources/glossary. Compilation of definitions for words commonly used to describe HIV/AIDS, its pathogenesis, associated treatments, and the medical management of related conditions.
GriefNet Support Groups - www.rivendell.org/support/sg2.html. GriefNet is an on-line support group for anyone dealing with grief, including AIDS or HIV+. It includes patients, parents, family, friends, lovers and anyone else touched by HIV/AIDS.
Growth House - www.growthhouse.org/pages.html. This is a comprehensive international clearinghouse of information regarding life-threatening illness and end-of-life care. Topics include palliative medicine, advance directives, grief, and professional resources. Articles, resources lists, a sophisticated search feature and extensive international web links are available. Asian AIDS resources are covered well.
Healing Well - www.healingwell.com. AIDS resources, information, books, chat room
HerbMed - www.herbmed.org. A project of the Alternative Medicine Foundation, Inc., this site is an interactive, electronic herbal database with hyperlinked access to scientific data underlying the use of herbs for health.
HIV Basics - hiv.hypermart.net. Investigacion Basica y Tratamiento de la Infeccion por HIV.
HIV InSite - hivinsite.ucsf.edu/InSite.jsp. HIV InSite, a project of the University of California San Francisco's (UCSF) Center for HIV Information, is a source of in-depth HIV/AIDS information and knowledge. The site has an extensive collection of original material, including the HIV InSite Knowledge Base, a comprehensive, online textbook of HIV disease from UCSF and the San Francisco General Hospital. It contains a section entitled, End-of-Life Care in HIV/AIDS.
HIV Positive - www.hivpositive.com. A comprehensive site with information about HIV, its prevention and treatment, with a special section on HIV and Pain.
Hospice Africa - hospice-africa.merseyside.org/. Hospice Africa was founded in 1993 to promote the initiation of hospice care in those countries where patients have not yet had the assistance of palliative medicine. Hospice Uganda is the "model hospice" for Hospice Africa. Directed by Dr. Anne Merriman, Hospice Uganda looks after terminally ill cancer patients by utilizing modern methods of pain and symptom management, and by offering counseling and spiritual support to the patient and family. It is estimated that nearly 75% of Hospice Africa's cancer patients also have AIDS.
Hospice Education Institute - www.hospiceworld.org. HEI is a non-profit organization with information and education about caring for the dying and bereaved. It targets both health care professionals and the public. There is a toll free number for obtaining information and referrals, and for disscussing palliative care and bereavement issues.
Hospice Foundation of America - www.hospicefoundation.org. The Hospice Foundation has extensive information about hospices - what they are, where to find them, myths and facts, personal stories and volunteering. The website includes information about teleconferences, a media center, suggested readings, weblinks, and an end-of-life database.
Hospice Net - www.hospicenet.org. This is a site dedicated to patients and families facing end-of-life issues. It educates about hospice, gives helpful information for caregivers, an extensive section on bereavement, and a variety of patient issues. Topics include advance directives, medicare, palliative care, pain and symptoms, and the needs of the dying.
How to Conduct a Needs Assessment - www.capcmssm.org/topic/2/. Part of the Center to Advance Palliative Care website, this article provides general guidance in assessing community needs for palliative care services. In addition, the site includes specific tools for assessing patient care as well as for evaluating organization and system-level processes.
HRSA HIV/AIDS Bureau - www.hab.hrsa.gov. The site contains publications and resources on HIV/AIDS, including the comprehensive book A Clinical Guide to Supportive and Palliative Care for HIV/AIDS.
IAPAC--International Association of Physicians in AIDS Care - www.iapac.org. This website provides information on HIV clinical management and public health policy, including information on pain management, anemia and fatigue, and nutrition and wasting.
Immune Enhancement Project - www.iepclinic.com/. The "Immune Enhancement Project is a non-profit Traditional Chinese Medicine (TCM) clinic (located in San Francisco, California). First founded in 1983 as a grassroots response to the AIDS epidemic, IEP is a widely respected resource both in the field of HIV treatment and TCM. During the past two decades, IEP has expanded the reach of complementary therapies and created a model for community-based healthcare for HIV disease." The Resources section includes IEP newsletter articles about developments in TCM treatment for HIV/AIDS, personal stories, and web links.
Indian Country - www.mpm.edu/wirp/ICW-34.html. Indian Country explains many of the traditional healing techniques of the Great Lakes Indians people. These traditions are used for preventing and curing illness for individuals and communities.
Indian Health Service - www.ihs.gov. This website provides basic information and regional contact information.
Initiative to Improve Palliative Care for African Americans - www.iipca.org. The mission of IIPCA is to promote research, education, and policies for the improvement of care for African American patients facing serious illness.
Instruments Used in End of Life (EOL) Care Education - mayday.coh.org/pdf/Instruments.pdf. City of Hope researchers have compiled these instruments for evaluation of palliative care education. The authors caution that there are no reliability or validity data available for these tools; they are newly developed and modifiable according to users needs.
International AIDS Economics Network (IAEN) - www.iaen.org/. The International AIDS Economic Network (IAEN) provides data, tools, and analysis on the economics of HIV/AIDS prevention and treatment in developing countries, for compassionate, cost-effective responses to the global epidemic.
International Association of Physicians in AIDS Care (IAPAC) - www.iapac.org/. The IAPAC website provides HIV clinical management updates and public health policy information. The site includes conference information, IAPAC publications, advocacy information, and membership details. Many online educational resources on the clinical management of HIV/AIDS are available on their website.
Jossey-Bass Publishers - www.josseybass.com. This website includes a variety of books, VHS tapes, and other trainer resources under the heading General Education.
Kaiser Daily HIV/AIDS Report - report.kff.org/aidshiv/. HIV/AIDS report compiled by the Henry J. Kaiser Family Foundation, an independent health care philanthropy. Features current news and reports on policy, statistics, and scientific developments related to HIV/AIDS, both nationally and worldwide.
Manager's Electronic Resource Center - erc.msh.org/. Designed to assist health care organizations in providing high quality, culturally-competent services to multi-ethnic populations. Includes The Provider's Guide to Quality and Culture. Cultural information is available about African Americans, Asian Americans, Hispanic/Latino Americans, Native Americans, and Pacific Islanders.
MEDLINEplus Alternative Medicine - www.nlm.nih.gov/medlineplus/alternativemedicine.html. This site is a service of the U.S. National Library of Medicine and the National Institute of Health. It includes information regarding clinical trials, research, specific conditions/aspects, practitioner directories, law and policy, organizations, and specific populations (children, teenagers, and women).
Midwest Bioethics Center - www.midbio.org. The community-based Midwest Bioethics Center is dedicated to integrating ethical considerations into health care decision making. It offers workshops and educational programs for professionals and lay people. It also assists health care providers in integrating ethics into clinical work and administrators in integrating ethics into organizations. The Center recently hosted a summit on cultural diversity in health care. Many books and videos are available to assist in communication, advance directives, and palliative care issues.
Multicultural End-of-Life Care - www.access2eolcare.org/modules.html. Developed by Access to End-of-Life Care, this curriculum is only available via training from their organization. Trainings are mostly offered in California. Visit their website for more information.
The seven modules are:
Module 1: A Framework for Multicultural End-of-Life Care
Module 2: Symptom Management from a Multicultural Perspective
Module 3: Bioethics and Multiculturalism at the End of Life
Module 4: Many Roads Home: Honoring Spiritual Diversity in EOL Care
Module 5: Grief and Bereavement in a Multicultural Setting
Module 6: Care for the Caregiving Providers
Module 7: An Organizational Response: Changing Practices and Policies to Meet the Needs of a Diverse Clientele
National Abandoned Infants Assistance Resource Center - socrates.berkeley.edu/~aiarc. Legal permanency planning for HIV-affected families. The entire issue of The Source, 5(2), is devoted to HIV permanency planning and can be downloaded from the AIA's website.
National AIDS Fund - www.aidsfund.org. One of America's largest philanthropic organizations dedicated to eliminating HIV/AIDS as a major health and social problem. The site includes information on workplace resources and a section about the Return-to-Work Initiative, which lists links to helpful articles, charts, and interviews.
National Association of People with AIDS (NAPWA) - www.napwa.org. NAPWA's web site features information about program activities (e.g., AIDSWATCH), news and bulletins, and access to NAPWA newsletters and publications, conference announcements, and other HIV/AIDS-related resources.
National Center for Complementary and Alternative Medicine - nccam.nih.gov. NCCAM is one of the 27 institutes and centers that make up the National Institutes of Health. Its mission is to support rigorous research on complementary and alternative medicine (CAM), to train researchers in CAM, and to disseminate information to the public and professionals on which CAM modalities work, which do not, and why. This comprehensive CAM website includes links to academic research centers, databases (such as CAM on PubMed), and other helpful information. Information on HIV/AIDS and CAM is accessible via a website search engine.
National Center for Death Education - www.mountida.edu/sp.cfm?pageid=307. The National Center for Death Education assists care-giving professionals and students in acquiring and maintaining a current knowledge base, and in developing creative and useful skills for providing care associated with end of life, bereavement, and loss. The website includes a Resource Library with materials from the sciences, anthropology, sociology, psychology, religion, art, literature, and history. All aspects of dying, death, and bereavement are represented including suicide, homicide, AIDS, terminal illness, explaining death to children, widowhood, and much more. In addition to the books and periodicals available, the NCDE maintains an extensive audiovisual collection of videos, 16mm films, and slide presentations. Contact Judith Harding, Resource Coordinator, at (617) 928-4552, to access the library.
In addition to the above resources, the NCDE offers educational programs taught by professionals working within the death and dying field. Contact Carol Wogrin, RN, PsyD., Executive Director, at (617) 928-4649 or at email@example.com.
National Family Caregivers Association - www.nfcacares.org. They have available for order a brochure entitled, Improving Doctor/Caregiver Communication: A Guide for Family Caregivers .
National Hospice and Palliative Care Organization - www.nhpco.org. NHPCO is dedicated to expanding America's vision of end-of-life care. The site includes extensive educational information and materials available about palliative care, advance directives, and finding an appropriate hospice. The National Center for Death Education provides course and workshop materials and resources for health care professionals. Topics include all aspects of palliative care, including care involving children.
National Hospice Foundation - www.hospiceinfo.org. HFA offers information and brochures about hospices, how to find and select a hospice program, communicating end-of-life wishes, and the medicare hospice benefit program.
National Minority AIDS Council (NMAC) - www.nmac.org. This national AIDS organization specifically develops its programs and services for community-based organizations serving people-of-color affected by HIV/AIDS. Their website provides information about NMAC conferences (including the U.S. Conference on AIDS), public policy efforts, research and treatment advocacy programs, technical assistance activities, and publications.
National Native American AIDS Prevention Center (NNAAPC) - www.nnaapc.org. This site includes current information, statistics, resources, and links dedicated to Native Americans with HIV/AIDS. It offers both the free (PDF) booklet Clinician's Guide: Working with Native Americans living with HIV, and a self-study course (CE/CME available) on HIV prevention for health care providers serving Native Americans.
Native American Center of Excellence at the University of Washington School of Medicine - staff.washington.edu/polly/nacoe/. This program encourages and enhances the professional development of American Indian students interested in studying medicine. An Indian Health Pathway certificate program is available for medical students.
Native American Women’s Health Education Resource Center - www.nativeshop.org/nawherc.html. This resource center, focusing on the needs of Native American women primarily, includes an AIDS prevention program. It is located in South Dakota.
Native Elder Care Resource Center - www.uchsc.edu/ai/nehcrc.
New Mexico AIDS InfoNet - www.aidsinfonet.org/708-native.html. Fact Sheet #708 is entitled Native American Traditional Healing .
NOAH: New York Online Access to Health - www.noah-health.org. New York library organizations established this website, which provides health information in both English and Spanish. The Health Topics section includes information on alternative care and treatments for HIV/AIDS. The Resources section includes comprehensive information on alternative healing approaches; and a comprehensive list of other CAM resources, including links to online journals, government resources, research centers, and to websites for locating practitioners.
NOLO - www.nolo.com. A comprehensive, easy to understand resource center for legal issues. Useful information in Wills and Estate Planning, Health Care Directives, and Power of Attorney including encyclopedia articles, FAQS, and a Q&A section.
On Our Own Terms: Moyers on Dying - www.pbs.org/wnet/onourownterms. This website is based on the Bill Moyers' PBS series, On Our Own Terms. It includes articles and resources on end-of-life tools, care options, final days, therapy, and support.
Pain Education - www.painedu.org/index2a.asp. This site offers information for pain professionals and can also be quite useful to people with pain. The site has a question and answer topic page moderated by leading pain professionals. It also has links to current educational literature.
Palliative Drugs.com - www.palliativedrugs.com. This website is targeted to health care providers, giving extensive information about the use and qualities of drugs used in palliative care.
Project Inform - www.projectinform.org. National, nonprofit, community-based organization working since 1985 to end the AIDS epidemic. Its primary focus is providing free, confidential, and empowering information "to anyone who asks". The site includes relevant publications, outreach and education, advocacy programs, and a national HIV/AIDS treatment hotline.
Project on Death in America - Transforming the Culture of Dying - www.soros.org/death. Resources on palliative care, including death and dying, bereavement, grief and mourning, and pain management.
Promoting Excellence in End-of-Life Care - www.promotingexcellence.org. A program of the Robert Wood Johnson Foundation, its mission is to advance improvement in end-of-life care by supporting innovative projects to improve the quality and accessibility of palliative care. Resources developed by projects, as well as information on evaluation, is included on the website.
Queer.net - www.queernet.org. Online support communities for many groups, including caregivers of people with HIV/AIDS.
Regional AIDS Training Network (RATN) - www.ratn.org. The Regional AIDS Training Network (RATN) is an organization of training institutions in eastern and southern Africa.
It assists in the development and delivery of training courses in HIV/AIDS care and prevention, as well as organizational capacity building. It has an HIV/AIDS care and prevention training resource database on its website.
Richard and Hinda Rosenthal Center for Complementary and Alternative Medicine - www.rosenthal.hs.columbia.edu. The Rosenthal Center's broad goals are to contribute to the informed research and practice of complementary and alternative medicine and to foster the development of a more comprehensive and inclusive medical system. This website includes information on the Center’s research projects, courses, and events. A resources section is organized for the specific needs of three main groups (although all areas are accessible to anyone): the CAM Columbia community, patients and consumers, and professionals and researchers. Additionally, there is information about internet and other general resources.
Shanti - www.shanti.org. Listing of organizations that provide direct services to people living with and otherwise affected by HIV/AIDS.
Sociedad Espanola de Cuidados Paliativos - www.secpal.com. SECPAL is the national professional organization for palliative care in Spain. Website is in Spanish and includes information about regional services as well as international links.
Standby Guardianship Training Curriculum - ist-socrates.berkeley.edu/~aiarc/standby/SGOnPubs.htm. Developed by the ABA Center on Children and the Law, this curriculum is available on the website of the Abandoned Infants Assistance Resource Center, School of Social Welfare, University of California at Berkeley.
The four modules are:
Module 1: Overview of Permanency Planning
Module 2: Assessing Client Readiness for Permanency Planning
Module 3: Legal Issues
Module 4: Provider Issues
Supportive Care of the Dying: A Coalition for Compassionate Care - www.careofdying.org. A coalition of Catholic health care providers and organizations dedicated to improving the system of palliative care. Website is non-sectarian. Downloadable articles are available from their Supportive Voice publication. They offer organizational assessment tools and questionnaires, competency standards and system assessment tools, and a series of videos and articles on various palliative care issues.
Tamanawit Unltd. - www.tamanawit.com. Tamanawit Unltd. is an international consulting firm specializing in such areas as multiculturalism, bilingual education, transcultural issues of mental health, HIV/AIDS awareness, prevention and treatment, and substance abuse. Articles and videos are available for order on their website.
The AIDS Support Organisation (TASO) - www.taso.co.ug/. Based in Uganda, The AIDS Support Organisation (TASO) was founded in 1987 to contribute to a process of restoring hope and improving the quality of life of persons and communities affected by HIV infection and disease.
The Alternative Medicine Homepage - www.pitt.edu/~cbw/altm.html. Created and maintained by a medical librarian with the Health Sciences Library System, University of Pittsburgh, this page includes many references for complementary and alternative medicine in the following categories: AIDS and HIV, databases of practitioners, internet resources, mailing lists and newsgroups, government resources, and related resources.
The Body: An AIDS and HIV Information Resource - www.thebody.org. The Body is a comprehensive resource center with over 550 topic areas. The broad topic areas include AIDS Basics & Prevention, Just Diagnosed, Treatment, Conferences, Quality of Life & Government. Their Race/Ethnicity section includes articles on AIDS in the following communities: Minorities in general, Latinos, African American, Asian, Native American, Arab Americans, & Minority Women. Other sections address issues of prisoners, women and the poor. They have columnists, "Ask the Experts", information on helping and getting help and connecting with others. They also have a section on Hospice/Palliative Care Resources with information and links, as well as general information about advance directives and permanency planning. This website is updated daily.
The Body: An AIDS and HIV Information Resource – Complementary, Alternative and Holistic Therapies - www.thebody.com/treat/altern.html#research. This site includes a short basic section about complementary medicine, and a more comprehensive overview about complementary therapies used by people living with HIV. It also includes a variety of HIV/AIDS-related links for information including research, personal accounts, interviews, articles, book, and buyer’s groups.
The National Hospice and Palliative Care Organization - www.nhpco.org. The National Hospice and Palliative Care Organization is an organization whose mission is to lead and mobilize social change for improved care at end of life.
Tool-Kit for Nursing Excellence at End-of-Life Transitions -TNEEL - www.son.washington.edu/departments/bnhs/pain/tneel.asp. The Toolkit for Nursing Excellence at End-of-Life Transitions (TNEEL) is an educational tool designed to teach nursing students how to care for people who are facing the end of life. Topics include symptom and pain management, communication and relationships with patients, families and healthcare team members, grief, loss, bereavement, hope, complementary comfort therapies, spiritual and psychosocial needs, and epidemiology of dying.
TNEEL-NE Version 1.0 is delivered on a CD-ROM and includes audio, video, graphics, PowerPoint presentations, photographs, and animations of individuals and families experiencing end-of-life transitions. Educators in academic and clinical settings can use the CD-ROM's content as-packaged, or they may customize and save much of it for use in their own classrooms.
The online demo version of one section of the curriculum is available at their website; additionally, the entire curriculum can be ordered from them.
Toolkit of Instruments to Measure End-of-Life Care - www.chcr.brown.edu/pcoc/toolkit.htm. Brown University’s Center for Gerontology and Health Care Research has assembled this compilation of instruments to assess end-of-life care. It offers detailed guidance in evaluation design and administering tools, and includes interviews for patients and family members.
Tools for Change - www.careofdying.org. This site features a compilation of tools provided by the coalition Supportive Care of the Dying. Instruments include the Organization Assessment Tools and Questionnaires, designed to provide information to organizations wishing to measure the quality of their services, and the Competency Standards and System Assessment Tool to help assess current standards for performance.
Tribal Connections in the Pacific Northwest - www.tribalconnections.org.
Turtle Island Native Network - www.turtleisland.org.
Uganda AIDS Commission (UAC) - iisd1.iisd.ca/50comm/commdb/desc/d26.htm. Recognizing that HIV/AIDS has causes and consequences beyond the health sector, the Government of Uganda developed and adopted the Multi-sectoral Approach to the Control of AIDS (MACA). The MACA policy and strategy stipulates that "all Ugandans have an individual and collective responsibility to be actively involved in HIV/AIDS prevention and control activities, in a coordinated manner, at the various administrative and political levels up to the grassroots." The Uganda AIDS Commission (UAC) was established by Statute of Parliament in 1992 and placed under the Office of the President to coordinate the multi-sectoral efforts.
UNAIDS: The Joint UN Programme on HIV/AIDS - www.unaids.org/. As the main advocate for global action on HIV/AIDS, UNAIDS leads, strengthens, and supports an expanded response aimed at preventing the transmission of HIV, providing care and support, reducing the vulnerability of individuals and communities to HIV/AIDS, and alleviating the impact of the epidemic. The website includes an extensive list of publications on HIV/AIDS in the developing world, including an issue on AIDS Palliative Care in the Best Practices Collection.
University of California-San Francisco, School of Medicine - medicine.ucsf.edu/resources/guidelines/culture.html. This website has a good cross-cultural medicine resource page.
University of Washington Patient & Family Education Committee - depts.washington.edu/pfes/cultureclues.html. This website produces information sheets regarding communicating effectively with different cultures in a health care setting. The following are available:
Culture Clues: Communicating with your African American patient
Culture Clues: Communicating with your Albanian patient
Culture Clues: Communicating with your Chinese patient
Culture Clues: Communicating with your Korean patient
Culture Clues: Communicating with your Latino patient
Culture Clues: Communicating with your Russian patient
Culture Clues: Communicating with your Vietnamese patient
University of Washington School of Medical Ethics in Medicine - eduserv.hscer.washington.edu/bioethics/. Breaking Bad News, a short case-based tutorial based on Robert Buckman's work, is available on this website.
US Living Will Registry - www.uslivingwillregistry.com. Allows electronic storage of patient advance directives, available to health care professionals 24 hours a day by phone or via the internet. They also provide advance directive storage services for health care professionals and hospitals. Information available in English and Spanish.
WA: Aging and Adult Services Administration - www.AASA.DSHS.wa.gov. The website for Washington's DSHS Aging & Adult Services Administration. It contains FAQs on Advance Directives as well as sample forms for Washington State.
WA: Northwest Justice Project - www.nwjustice.org. The Northwest Justice Project has FAQs and downloadable Advance Directives for Washington State. It also has Spanish and Russian translations of both the information and the forms, as well as a list of their statewide offices.
WA: Volunteer Attorneys for People with AIDS (VAPWA) - www.kcba.org/VAPWA/vapwa.htm. Volunteer Attorneys for People with AIDS provides legal information and assistance to low-income PWAs. Its website has online information about Advance Directives, including downloadable forms. It also has a list of legal resources throughout Washington State.
WholeHealthMD - www.wholehealthmd.com/refshelf/substances_view/1,1525,721,00.html. Online article entitled Native American Medicine .
Wisdom of the World: Media for a Meaningful Life - www.gracefulpassages.com/index.html. This website offers a variety of media and other resources related to healing, including loss and dying. The website states that, "
The Wisdom of the World™ Series meets major issues which face us on our human journey, from birth to death: loss, facing adversity, and moving beyond structures which bind our spirit."
Available products include Graceful Passages: A Companion for Living and Dying, which includes healing music and messages; and Grace in Practice: A Clinical Application Guide, which "provides the caregiver with tools for increasing the role of presence in their work while appreciating the combined benefit of music and wisdom". The clinical guide is available to order for a fee or can be downloaded for free. Links to Allies and Community Resources includes weblinks, and information about speakers, music, and other resources.
World Health Organisation, profile on Uganda - www.whoafr.org/uganda/index.html. The World Health Organisation Regional Office for Africa has compiled a country health profile on Uganda that includes an overview, statistics on the burden of disease, information on the HIV/AIDS situation, and background on the country's health systems.
Zen Hospice Project - www.zenhospice.org. Zen Hospice Project is a fusion of spiritual insight, based on the Buddhist tradition, and practical social action. The Project has developed an innovative model for improved end-of-life care, including residential hospice care, volunteer programs, and educational efforts. It has also recently created the Institute of Dying, allowing training and dissemination of the Project's work.