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: ResourcesHospice Net: A site for patients, families, and caregivers when facing end-of-life issues in illness.Offers resources for patients and caregivers, information on locating and evaluating hospiceservices, and topics in bereavement.26 picas• www.hospicenet.org/• List of international hospices: www.teleport.com/~hospice/dirinter.htm• E-mail: comments@hospicenet.orgMedicaid/Medicare Hospice Services: This site describes coverage and reimbursement of hospicethrough Medicaid.• www.hhs.gov/medicaid/services/hospice.aspNational Prison Hospice Association: NPHA promotes excellence in hospice care for prisonerswho are approaching death. The stated purpose of NPHA is to assist corrections and hospiceprofessionals in their continuing efforts to develop high quality patient care procedures andmanagement programs. The organization offer resources, a newsletter, and networking.• www.npha.org/index.html• Phone: 303-544-5923; Fax: 303-444-2824; E-mail: npha@npha.orgIII. CARE FOR THE CAREGIVERSee Chapter 20 on Care for the Caregiver for a moredetailed description of caregiver web sites.The ARCH National Respite Network and Resource Center: The mission of this organizationis “to support service providers and families through training, technical assistance, evaluation,and research.” The center offers technical assistance, factsheets, and resources in respite care.• www.chtop.com/arch/index.htm• Respite Care for Children with HIV-related Symptoms factsheet:www.chtop.com/archfs5.htm• National Respite Locator Service: www.chtop.com/locator.htmor call 800-773-5433Caregiver.com: An informational and support web site for all diseases and age groups.• www.caregiver.comCaregiver Health: This American Medical Association site was “designed to provide providersand caregivers with information and tools for assessing caregiver health and for locating additionalresources to assist in reducing the risks of caregiving.” It includes a caregiver self-assessmentquestionnaire offered in English and Spanish• www.ama-assn.org/ama/pub/category/4642.htmlCaregiving.com: An informational and support web site for caregivers of the elderly with educationalpackets.• www.caregiving.com520U.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: ResourcesCaring for the HIV/AIDS Caregiver, Paul A. Wilson, edited by Vincent J. Lynch• Auburn House: 1996, ISBN 0-86569-239-426 picasCaring for Someone with AIDS at Home: A guide from American Red Cross and Centers forDisease Control and Prevention. Topics covered include children with AIDS, guarding againstinfections, and providing care and emotional support.• www.hivatis.org/caring/Empowering Caregivers: A web site for all diseases and age groups with activities and a newsletter.• www.care-givers.comFamily Caregiver Alliance: This nonprofit organization addresses the needs of people providinglong-term home care. The site offers fact sheets in English, Spanish, and Chinese, policyinformation, an online support group, and other resources for caregivers.• www.caregiver.orgFriends’ Health Connection: A web site for all diseases and age groups in which caregivers arematched for one-on-one support. (Membership fee)• www.48friend.comHealingWell.com: A web site for all diseases and age groups with an HIV-specific chat room andresource directory.• www.healingwell.comHealth Care Exchange Initiative: This web site, which specializes in AIDS, has expert consultationon caregiver issues and organizes intercity AIDS caregiver exchanges.• www.hcei.orgNational Family Caregivers Association: This web site for all diseases and age groups providesa newsletter, caregiver kits, and a resource locator service.• www.nfcacares.orgQueernet.com: This web site for gay, lesbian, bisexual, and transgendered people, offers anonline support group for HIV/AIDS caregivers.• www.queernet.orgWebofCare.com: This informational and support web site for all diseases and age groups has anewsletter, and grief support groups.• www.webofcare.comWell Spouse Foundation: This organization for all diseases and age groups offers mentors fornew caregivers, a national network of support groups, a newsletter, and letter writing “roundrobins.”• www.wellspouse.orgXXVIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 521
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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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Page 525 and 526: Chapter 26.26 picasResourcesMagda B
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DRUGS AND THERAPIES INDEXNOTES: Ent
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