The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

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A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 26: ResourcesX. GENERAL HIV/AIDS CONSUMER RESOURCESThe Body: This web site is an information source on HIV/AIDS for patients. It aims to improvequality 26 of picas life and foster a community in HIV/AIDS patients.• www.thebody.com• Quality of Life information on alternative therapies, psychosocial issues, religion,financial and legal issues, fatigue, workplace issues. www.thebody.com/quality.htmlNational AIDS Hotline: A service sponsored by the Centers for Disease Control and Prevention,for general questions about HIV and AIDS.• Phone: 1-800-342-2437, Spanish 1-800-344-7432, TDD 1-800-243-7889National Association of People with AIDS: NAPWA “advocates on behalf of all people livingwith HIV and AIDS in order to end the pandemic and the human suffering caused by HIV/AIDS.”The organization offers publications, programs, education, and resources for people living withHIV and AIDS.• www.napwa.org/• Phone: 202-898-0414; Fax: 202-898-0435; E-mail: napwa@napwa.orgProject Inform: A national project targeting consumers with up-to-date treatment information,strategies for adherence, and other tools for people living with HIV.• www.projinf.org/• National HIV/AIDS Treatment Hotline: 1-800-822-7422 (toll-free in the United States)or 415-558-9051 (in the San Francisco Bay Area or internationally). Hotline hours areMonday–Friday, 9 a.m. - 5 p.m. and Saturday, 10 a.m. - 4 p.m. (Pacific Time).XI. CULTURAL COMPETENCYAssuring Cultural Competence in Health Care: Recommendations for National Standardsand an Outcomes-Focused Research Agenda: This project makes recommendations for nationalstandards for culturally and linguistically appropriate services in health care. From theOffice of Minority Health in the Department of Health and Human Services; also available inSpanish.• www.omhrc.gov/clas/Cultural Competence: A Journey: This publication is sponsored through the Health Resourcesand Services Administration’s Bureau of Primary Health Care. It describes the domains of culturalcompetency and the stories and experiences of several community programs in this topic area.• Reprints may be ordered through www.ask.hrsa.gov or by calling the HRSA Clearinghouseat 1-888-ASK-HRSA (275-4772) or e-mail ask@hrsa.govDiversity Rx: Promotes cultural competency in health care for minority, immigrant, and ethnicallydiverse communities. The site discusses political, medical, legal, and social issues behindcultural competency, and offers an electronic newsletter, a Medical Interpretation Resourcesand References Guide, and a Multicultural Health Best Practices report.• www.diversityrx.org• rcchc@aol.com530U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau
A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 26: ResourcesPalliative Care Association of South Australia: An advocacy group for palliative and hospicecare in South Australia. Offers information for consumers and clinicians.• www.pallcare.asn.au/26 picas• Multicultural Palliative Care Guidelines (geared towards clinicians), available intwenty-one languages: www.pallcare.asn.au/mc/index.html• Palliative care informational brochure (geared towards consumers), available in twentyonelanguages: www.pallcare.asn.au/difflang.htm• Phone: +61 8 8291 4137; Fax: +61 8 8291 4122; E-mail: pcare@pallcare.asn.auNational Center for Cultural Competence: NCCC aims to increase the capacity of health careprograms to design, implement, and evaluate culturally competent service systems. The centerprovides training and technical assistance, and exchanges and disseminates information oncultural competence. It is sponsored by Georgetown University and HRSA.• www.gucdc.georgetown.edu/nccc/• Phone: 1-800-788-2066 or 202-687-5387; Fax: 202-687-8899;TDD 202-687-5503; E-mail:cultural@georgetown.eduXII. POLICY/ADVOCACYAmericans for Better Care for the Dying: Their stated goals are to 1) build momentum forreform, 2) explore new methods and systems for delivering care, and 3) shape public policythrough evidence-based understanding. Information on policy, news updates, a newsletter, andresources are available.• www.abcd-caring.org/• Phone: 202-895-9485; Fax: 202-895-9484, E-mail: info@abcd-caring.orgProject on Death in America: The mission of this organization is to “understand and transformthe culture and experience of dying and bereavement through initiatives in research, scholarship,the humanities, and the arts, and to foster innovations in the provision of care, publiceducation, professional education, and public policy.” Information on model programs, grants,and policy is available on the site.• www.soros.org/death/• Phone: 212-548-0150; E-mail: pdia@sorosny.orgXIII. INTERNATIONAL FOCUSAssociation François-Xavier Bagnoud: AFXB is an international organization that sponsorsresearch, programs, and field work in areas such as palliative care, care for AIDS orphans inAfrica, humanitarian rights, and pediatric HIV/AIDS care. The work in palliative care involvesservices, research, and training.• www.fxb.org/palliative/index.html• Phone: (Switzerland) +41-217-961-302; (US) 617-432-3511, E-mail: info@afxb.orgXXVIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 531
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DedicationA Clinical Guide to Suppo
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Lynn A Jansen, RN, PhDAssistant Res
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TABLE OF CONTENTSPart IChapter 1Cha
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IChapter 1.26 picasHIV and Palliati
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IA Clinical Guide to Supportive and
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A Clinical Guide to Supportive and
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IIIChapter 3.Assessment of Physical
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Chapter 6.26 picasPulmonary Symptom
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Chapter 8.26 picasOral ProblemsDavi
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Chapter 9.26 picasDermatologic Prob
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Chapter 10.26 picasPsychiatric Prob
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Chapter 11.26 picas Substance Use P
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Chapter 14.26 picasCulture and Care
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Chapter 15.26 picasSpecial Populati
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Chapter 17.26 picasEthical IssuesLy
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Chapter 18.26 picasLegal and Financ
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Chapter 19.Palliative 26 picas Care
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Chapter 21.26 picas Patient-Clinici
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DRUGS AND THERAPIES INDEXNOTES: Ent
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