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: ResourcesIV. CANCER/CANCER PAINAmerican College of Physicians Home Care Guide for Advanced Cancer: This guide is forfamily 26 members, picashospice workers, and caregivers who are caring for advanced cancer patients.Information is offered on respite, pain management, symptoms, helping younger people, andgrieving.• www.acponline.org/public/h_care/index.htmlCancer Net: This extensive site, supported by the National Cancer Institute, offers both patientand clinician resources on topics such as pain management and hospice care.• www.cancernet.gov/• Cancer Information Service, 1-800-4-CANCER (422-6237), Monday through Friday, 9:00a.m. to 4:30 p.m.; TTY: 1-800-332-8615.National Comprehensive Cancer Network, Cancer Pain Treatment Guidelines for Patients:This guide was created in partnership with the American Cancer Society, and is a guide for thegeneral public on how the major cancer centers in the US treat pain.• www.nccn.org/patient_guidelines/pain_cancer/pain/1_introduction.htm• Call the NCCN at 1-888-909-NCCN or the ACS at 1-800-ACS-2345 for more information.WHO Cancer Pain Relief, 2 nd edition (1996): This publication provides a proposed method forpain relief, and includes information on how pain medications are available internationally.• Report can be reached at www.who.int/ncd/cancer/publications/books/cancer_pain_relief.html• To order a copy, check your nearest sales agent at: www.who.int/dsa/cat97/zsale.htmor WHO Headquarters, WHO, Marketing and Dissemination,CH-1211 Geneva 27, Switzerland,• Phone: +41 22 791 24 76; Fax: +41 22 791 48 57; E-mail: publications@who.chV. PEDIATRICA Death in the Family: Orphans of the HIV Epidemic. Carol Levine, Editor. For orderinginformation, call the United Hospital Fund’s Publication Program at (212) 494-0700 or write tothem at 350 5th Avenue, 23rd Floor, New York, NY 10118.American Academy for Pediatrics Policy Statement on Palliative Care for Children: Thisstatement was issued in August 2000, and “presents an integrated model for providing palliativecare for children living with a life-threatening or terminal condition.” The report discussesbarriers in pediatric palliative care, and makes recommendations for future services.• www.aap.org/policy/re0007.html• Journal reference: Committee on Bioethics and Committee on Hospital Care. PalliativeCare for Children. Pediatrics, 106: 351-7, 2000.522U.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: ResourcesChildren’s Hospice International: CHI is a non-profit organization for children with life-threateningillnesses and their families. The organization offers resources, advocacy, care, and supportfor the children and their families, as well as clinician education and training.26 picas• www.chionline.org/• CHI has worked with the Centers for Medicare and Medicaid Services (CMS) to developan initiative in children’s hospice, called the Program for All-Inclusive Care forChildren and their Families (PACC), to develop demonstration programs that will havemodels of children’s hospice care that encourage the continuum of care and decreasecommon obstacles in quality of children’s hospice care. www.chionline.org/pacc.html• Toll Free Phone: 800-2-4-CHILD; Phone: 703-684-0330; Fax: (703) 684-0226; E-mail:chiorg@aol.com• Note that PACC is trademarkedElizabeth Glaser Pediatric AIDS Foundation: This non-profit organization is involved in fundingresearch and programs in the care and prevention of HIV/AIDS in children. Parent resources,grant, award, and fellowship applications, and other resources are available on the site.• www.pedaids.org/index.html• Phone: 888-499-HOPE (4673); E-mail: info@pedAIDS.orgThe Family Center: The Family Center works to create a more secure present and future forchildren whose parents have life-threatening illness by providing comprehensive legal and socialservices, education and research. Numerous books and materials available.• Phone: 212-766-4522• www.thefamilycenter.orgThe François-Xavier Bagnoud Center (FXB) at the University of Medicine and DentistryNew Jersey: FXB Center provides a model for the care of mother-to-child transmitted HIV disease.The program’s mission is to “deliver care that is community-based, child-centered, familyfocused,comprehensive and coordinated.” The program also conducts research and providestraining to health care providers.• www.fxbcenter.org/KIDSAID: This web site is a place for children who are experiencing grief to share thoughts,picture, poems, etc. There are resources on the site for children and parents. The adult griefweb site, GriefNet runs the site.• www.kidsaid.com/• kidsaid@griefnet.orgNational Pediatric and Family HIV Resource Center: This center is located at the Universityof Medicine and Dentistry of New Jersey and is a resource for health and social service professionalswho serve children, adolescents, and families with HIV/AIDS. They offer education,training and technical assistance, patient materials, and other resources.• www.pedhivaids.org/XXVIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 523
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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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Page 482 and 483: A Clinical Guide to Supportive and
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Page 525 and 526: Chapter 26.26 picasResourcesMagda B
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DRUGS AND THERAPIES INDEXNOTES: Ent
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