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 20: Care for the CaregiverTable 20-3: Helpful Web Sites for Caregivers (continued)National FamilyMajor Features Caregivers Association Queernet WebofCare.com Well Spouse Foundation& Resources www.nfcacares.org www.queernet.org www.webofcare.com www.wellspouse.orgGay, lesbian, bisexual,All diseases/age groupsAll diseases/age groupsand transgendered people (Membership fee)26 picasAll diseases/age groupsWeb site focusOnline articles and/orrecommended readings ! !Bulletin board !Chat room ! !Conferences and workshops !Expert consultationMentors available for! !on caregiver issues new caregiversNewsletter ! ! !Other publicationsCoping with Mainstay: For the Well!Caregiver Worries ($) Spouse of the Chronically Ill ($)Support groups On-line support group for Grief support groups National networkHIV/AIDS caregivers of support groupsOther resources Caregiver kits; Help with caregiving Letter writingresource locator service; tasks; HIV resource “round robins”Rx discounts database$ indicates a charge for the resource/service426U.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 20: Care for the Caregiver26 picasREFERENCES1. O’Neill JF, Marconi K, Surapruik A, Blum N. Improving HIV/AIDS services through palliative care: an HRSAperspective. J Urban Health 77(2): 244-54, 2000.2. Kaiser Family Foundation. The HIV/AIDS epidemic in the United States. June 2001. Kaiser FamilyFoundation Web Site. www.kff.org/content/2001/3029/USFactSheet.pdf. Accessed July 10, 2001.3. CDC. HIV and AIDS - United States, 1981-2000. MMWR 50(21): 430-34, 2001.4. McFarland W, Katz MH, Stoyanoff SR, et al. HIV incidence among young men who have sex with men - sevenU.S. cities, 1994-2000. MMWR 50(21): 440-44, 2001.5. Bozzette SA, Berry SH, Duan N, et al. The care of HIV-infected adults in the United States. N Engl J Med339(26): 1897-1904, 1998.6. CDC. CDC guidelines for national human immunodeficiency virus case surveillance, including monitoring forhuman immunodeficiency virus infection and acquired immunodeficiency syndrome. MMWR 48(RR-13):1999.7. National Family Caregivers Association. 54 million Americans involved in family caregiving last year - doublethe previously reported figure. 13 October 2000. National Family Caregivers Web Site. www.nfcacares.org.Accessed March 21, 2001.8. Turner HA, Catania JA, Gagnon J. The prevalence of informal caregiving to persons with AIDS in the UnitedStates: caregiver characteristics and their implications. Soc Sci Med 38(11): 1543-52, 1994.9. London AS, Fleishman JA, Goldman DP, McCaffrey DF, Bozzette SA, Leibowitz AA. Use of unpaid and paidhome care services among people with HIV infection in the USA. AIDS Care 13(1): 99-121, 2001.10. Arno PS, Levine C, Memmott MM. The economic value of informal caregiving. Health Aff 18(2): 182-88, 1999.11. Ward D, Brown M.A. Labor and cost in AIDS family caregiving. West J Nurs Res 16(1): 10-22, 1994.12. Carlisle C. The search for meaning in HIV and AIDS: The carers’ experience. Qual Health Res 10(6): 750-765,2000.13. Irving G, Bor R. Psychological distress among gay men supporting a lover or partner with AIDS: a pilot study.AIDS Care 7(5): 605-17, 1995.14. Caldwell AM. Taking time out for the rest of your life. Quest 6(3): 1-6, 1999. Available at:http://www.mdausa.org:80/publications/Quest/q63respite.html. Accessed March 19, 2001.15. Glajchen M, Fraidin L. Caring for the caregivers. StopPain.Org at Beth Israel Medical Center Newsletter2(3): 1-4, 2001. Available at http://www.stoppain.org. Accessed March 26, 2001.16. Pakenham KL, Dadds MR. Carers’ burden and adjustment to HIV. AIDS Care 7(2): 189-203, 1995.17. Dwyer JW, Lee GR, Jankowski TB. Reciprocity, elder satisfaction, and caregiver stress and burden: theexchange of aid in the family caregiving relationship. J Marriage Fam 56(1): 35-43, 1994.18. Sisk RJ. Caregiver burden and health promotion. Int J Nurs Stud 37(1): 37-43, 2000.19. Stull DE, Kosloski K, Kercher K. Caregiver burden and generic well-being: opposite sides of the same coin?The Gerontologist 34(1): 88-94, 1994.20. Pearlin LI, Aneshensel CS, LeBlanc AJ. The forms and mechanisms of stress proliferation:the case of AIDS caregivers. J Health Soc Behav 38(3): 223-36, 1997.21. Brown MA, Powell-Cope, GM. Caring for a Loved One with AIDS: the Experiences of Families, Lovers,and Friends. Seattle: University of Washington Press, 1992.XXU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 427
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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 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 25.26 picas Prevention of S
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Chapter 26.26 picasResourcesMagda B
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DRUGS AND THERAPIES INDEXNOTES: Ent
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