Caregiver
Resources
Articles
Baker, S. (1999). Home care: Addressing the needs of people living with AIDS and their caregivers
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. Nurs Clin North Am 34(1): 201-12.
PubMed Abstract.
Baker, S., Sudit, M. & Litwak, E. (1998). Caregiver burden and coping strategies used by informal caregivers of minority women living with HIV/AIDS
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. ABNFJ 9(3): 56-60.
PubMed Abstract.
Baker, S., Sudit, M. & Litwak, E. (1998). Caregiver characteristics and types of assistance provided by caregivers to minority women living with HIV/AIDS
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. J Cult Divers 5(1): 11-18.
PubMed Abstract.
Carlisle, C. (2000). The search for meaning in HIV and AIDS: The carer’s experience
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. Qual Health Res 10(6): 750-765.
PubMed Abstract.
Gueritault-Chalvin, V., Kalichman, S., Demi, A. & Peterson, J. (2000). Work-related stress and occupational burnout in AIDS caregivers: Test of a coping model with nurses providing AIDS care
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. AIDS Care 12(2): 149-61.
PubMed Abstract.
Hackl, K., Somlai, A., Kelly, J. & Kalichman, S. (1997). Women living with HIV/AIDS: The dual challenge of being patient and caregiver
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. Health Soc Work 22(1): 53-62.
PubMed Abstract.
Hansell, P., Hughes, C., Caliando, G., Russo, P., Budin, W., Hartman, B., et al. (1999). Boosting social support in caregivers of children with HIV/AIDS
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. AIDS Patient Care 13(5): 297-302.
PubMed Abstract.
Leblanc, A., London, A. & Aneshensel, C. (1997). The physical cost of AIDS caregiving
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. Soc Sci Med 45(6): 915-923.
PubMed Abstract.
Meier, D., Back, A. & Morris, R. (2001). The inner life of physicians and care of the seriously ill
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. JAMA 286(23): 3007-14.
PubMed Abstract.
Mullan, J. (1998). Aging and informal caregiving to people with HIV/AIDS
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. Research on Aging 20(6): 712-738.
Rose, M. & Clark-Alexander, B. (1998). Caregivers of children with HIV/AIDS: Quality of life and coping styles
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. J Assoc Nurs AIDS Care 9(1): 58-65.
PubMed Abstract.
Stajduhar, K. (1997). Loss and bereavement: HIV/AIDS family caregiving
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. Can J Nurs Res 29(4): 73-86.
PubMed Abstract.
Theis, S., Cohen, F., Forrest, J. & Zelewsky, M. (1997). Needs assessment of caregivers of people with HIV/AIDS
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. J Assoc Nurs AIDS Care 8(3): 76-84.
PubMed Abstract.
Tolliver, D. (2001). African-American female caregivers of family members living with HIV/AIDS
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. Families in Society 82(2): 145-156.
Turner, H., Pearlin, L. & Mullan, J. (1998). Sources and determinants of social support for caregivers of persons with AIDS
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. J Health Soc Behav 39(2): 137-51.
PubMed Abstract.
Books
Caregiving and HIV. St. Mary's Medical Center booklet. To order call 415-750-5787.
Caring for someone with AIDS. Channing L. Bete Company. Call 800-477-4776 to order, or order online. www.Channing-bete.com.
Caring for someone with AIDS at home: A guide. Booklet published by US Dept. of Health & Human Services. Available for order online. www.cdc.gov/hiv/pubs/brochure/careathome.htm.
Anderson, G. & Ryan, C. (1999). Children and HIV/AIDS. Somerset, NJ: Transaction Publishers.
Baxter, D. (1998). The least of these my brethren: A doctor’s story of hope and miracles in an inner-city AIDS ward. Orlando, FL: Harcourt Trade Publishers.
Bennett, L. (1995). AIDS health care: Staff stress, loss, and bereavement. In: Sherr, L., (Eds.). Grief and AIDS. New York, NY: John Wiley & Sons.
Bennett, L., Casey, K. & Austin, P. (1996). Issues for women as carers in HIV/AIDS. In: Sherr, L., Hankins, C., et al., (Eds.). AIDS as a gender issue: Psychosocial perspectives. Philadelphia, PA: Taylor & Francis.
Boyd-Franklin, N. (1995). Children, families and HIV/AIDS. New York, NY: Guilford Press.
Brown, M. & Powell-Cope, G. (1992). Caring for a loved one with AIDS: The experiences of families, lovers and friends. Seattle, WA: University of Washington Press.
Brown, R. (1994). The gifts of the body. New York, NY: Harper Collins Publishers.
Curtis, J. (2001). Managing death in the intensive care unit: The transition from care to comfort. New York, NY: Oxford University Press.
Denniston, E. The caregivers guide: A labor of love. Self published. To order call 207-546-2007.
Donnelly, K. (1999). Recovering from the loss of a loved one to AIDS: Help for surviving family, friends, and lovers who grieve. Collingdale, PA: Diane Publishing.
Draimin, B. (1993). Coping when a parent has AIDS. New York, NY: Rosen Publishing Group.
Drench, M. (1998). Red ribbons are not enough: Health caregivers' stories about AIDS. Newberg, OR: BookPartners, Inc.
Edison, T. (1993). The AIDS caregiver's handbook. Gordonville, VA: Saint Martin's Press.
Froman, P. (1992). After you say goodbye: When someone you love dies of AIDS. San Francisco, CA: Chronicle Books.
Garfield, C. & Ober, D. (1995). Sometimes my heart goes numb: Love and caregiving in a time of AIDS. San Francisco, CA: Jossey-Bass Publishers.
Golden, S. (1988). Nursing a loved one at home: A caregiver’s guide. A supportive, practical medical handbook for all levels of care. Philadelphia, PA: Running Press.
Greif, J. & Golden, B. (1994). AIDS care at home: A guide for caregivers, loved ones, and people with AIDS. New York, NY: John Wiley & Sons.
Hay, L. (1988). The AIDS book: Creating a positive approach. Santa Monica, CA: Hay House.
Hoag, S. (1999). The two headed dragon: Exploring the gifts of AIDS. Sacramento, CA: Ravenwood Publishing.
Houts, P. (1998). Home care guide for HIV and AIDS: For family and friends giving care at home. American College of Physicians. First five chapters available free online or call 800-523-2600 to order the whole guide. www.acponline.org/public/hiv/contents.htm.
Kavar, L. (1993). Families re-membered: Pastoral support for friends and families living with HIV/AIDS. Gaithersburg, MD: Chi Rho Press.
Klitzman, R. (1997). Being positive: The lives of men and women. Blue Ridge Summit, PA: Ivan R. Dee, Inc.
Kubler-Ross, E. (1997). AIDS: The ultimate challenge. New York, NY: Collier Books.
Kutzen, H. & Lindhorst, T. (1996). End of life: Information for caregivers. New Orleans, LA: Delta Region AIDS Education and Training Center.
Lego, S. (1993). Fear and HIV/AIDS. Albany, NY: Delmar Thomson Learning.
Lynch, V. & Wilson, P. (1996). Caring for the HIV/AIDS caregiver. Westport, CT: Glenwood Publishing Group.
Macklin, E. (1993). AIDS and families. New York, NY: Harrington Park Press.
Martelli, L., Peltz, F., Messina, W. & Petrow, S. (1993). When someone you know has AIDS: A practical guide. New York, NY: Crown Publishing.
Moffatt, B. (2000). The caregiver's companion: Words to comfort and inspire. Lincoln, NB: iUniverse, Inc.
Moffatt, B. (1987). When someone you love has AIDS: A book of hope for family and friends. San Bernadino, CA: Millefleurs.
Monette, P. (1998). Borrowed time: An AIDS memoir. Orlando, FL: Harcourt Trade Publishers.
Monroe, P. (1998). Circles of care: Caring for and remembering people with AIDS. Seattle, WA: AIDS Caregivers Support Network.
Moran, F. (1996). Witness the love: Stories from the heart of the AIDS epidemic. Santa Fe, NM: The Journey Home, Inc.
Mount Sinai Hospital and Casey House Hospice (1995). A comprehensive guide for the care of persons with HIV disease. Module 4: Palliative care, living with dying, dying at home. Toronto, ON: Mount Sinai Hospital and Casey House Hospice.
Nord, D. (1997). Multiple AIDS-related loss: A handbook for understanding and surviving a perpetual fall. Philadelphia, PA: Taylor & Francis.
Odets, W. (1995). In the shadow of the epidemic: Being HIV negative in the age of AIDS. Durham, NC: Duke University Press.
Peabody, B. (1986). The screaming room. San Diego, CA: Oak Tree.
Reed, P. (1990). Serenity: Support and guidance for people with HIV, their families, friends, and caregivers. Berkeley, CA: Celestial Arts Publishing.
Selwyn, P. (1998). Surviving the fall: The personal journey of an AIDS doctor. New Haven, CT: Yale University Press.
Shands, N. (1988). AIDS: The lonely voyage. San Carlos, CA: Wide World.
Stulberg, I. & Shapira, J. (1998). Issues for caregivers, families and significant others. In: W. van Gorp, & S. Buckingham, (Eds.). Practitioner’s guide to the neuropsychiatry of HIV/AIDS. New York, NY: The Guildford Press.
Ungvarski, P. (1989). Living with HIV infection: A caregivers guide. New York, NY: Visiting Nurse Service of New York..
Vergehese, A. (1995). My own country: A doctor's story. Westminster, MD: Vintage Books.
Walker, G. (1995). In the midst of Winter: Counseling families, couples and individuals with AIDS infection. New York, NY: W.W. Norton & Co..
Wiltshire, S. (1994). Seasons of grief and grace: A sister’s story of AIDS. Nashville, TN: Vanderbuilt University Press.
Wyatt-Morley, C. (1997). AIDS memoir: Journal of an HIV-positive mother. Bloomfield, CT: Kumarian Press.
Camps And Retreats
AIDS Foundation Houston, afh@aidshelp.org
3202 Weslayan Annex
Houston, TX 77027
713-623-6796
Camp H.U.G. (Hope Understanding and Giving) is a camp for HIV positive children, their siblings and parents or caregivers. Recreation is the main purpose for children while caregivers can attend psychosocial workshops.
AIDS Task Force, 1080 S Clarkson
Denver, CO 80209
303-733-7305
Holds two weekend retreats each year for people with HIV, family, partners, and health care professionals at Shadowcliff Retreat Center. The goal is to help people develop and maintain a healthy lifestyle so that AIDS can be a chronic, manageable condition.
Rise n' Shine, www.risenshine.org
1305 4th Avenue, Suite 404
Seattle, WA 98101
206-628-8949
Provides emotional support for children and teens living with a parent or other close family member with HIV or AIDS through a residential summer camp and mentor program.
Hotlines
HRSA/AETC National Clinicians HIV Consultation Center
800-933-3413
Professional care consultation for providers
National AIDS Clearinghouse (CDC)
www.cdc.gov.
800-458-5231
Information, publications, and technical assistance on AIDS prevention
National AIDS Hotline
800-342-2437 (AIDS)
800-344-7432 (SIDA) Spanish
Information and referral on HIV/AIDS
Pediatric AIDS Foundation
www.pedaids.org.
888-499-4673
Information and referral on treatments for children
Organizations
AIDS Alliance for Children, Youth & Families
www.aids-alliance.org.
1600 K Street NW
Suite 300
Washington, DC 20006
202-785-3564
fax: 202-785-3579
info@aids-alliance.org
AIDS Alliance for Children, Youth & Families is the only national organization focused solely on the needs of children, youth, and families living with, affected by, or at risk for HIV and AIDS. Through local and national trainings, technical assistance, and an array of publications, AIDS Alliance's Education and Training Center provides information, resources, and support to consumers and providers of HIV/AIDS services.
American Association of Retired Persons (AARP) Grandparent Information Center
www.aarp.org.
601 E Street NW
Washington, DC 20049
202-434-2288
fax: 202-434-6474
The American Association of Retired Persons (AARP) maintains the Grandparent Information Center for all grandparents who are raising their grandchildren, including those who are caring for their grandchildren due to HIV/AIDS. The Center offers information, referrals, and support groups, and publishes a newsletter titled Parenting Grandchildren: A Voice for Grandparents.
Association of Nurses in AIDS Care
www.anacnet.org.
11250 Roger Bacon Drive
Suite 8
Reston, VA 20190-5202
800-260-6780
fax: 703-925-0081
AIDSNURSES@aol.com
Addresses the specific needs of nurses working in HIV/AIDS. With a highly regarded peer-reviewed journal, and an Annual Conference featuring national and international speakers and educational and scientific sessions on the latest developments in HIV nursing, ANAC is meeting the needs of nurses in HIV/AIDS care, research, prevention, and policy.
Bailey-Boushay House
www.virginiamason.org/dbbailey-boushay/default.htm.
2720 E Madison
Seattle, WA 98112
206-322-5300
Residential and adult day health care. Individual, couples and family counseling for caregivers of residents and people who attend the Adult Day Health program.
Child Welfare League of America
www.cwla.org.
440 First Street NW
Third Floor
Washington, DC 20001-2085
202-638-2952
fax: 202-638-4004
CWLA's National Task Force on HIV Infection in Children, Adolescents, and Families plays a prominent role in shaping the CWLA's agenda in this area. Through its leadership, important resources have been developed to assist families living with HIV/AIDS and the child welfare professionals serving them.
Couples Project
www.thebody.com/couples.
722 W 168th Street
Unit 29
New York, NY 10032
212-740-3204
Holds workshops to build support networks, reduce stress by teaching communication and problem solving skills for male couples where one is HIV positive and one is HIV negative. Each workshop has eight sessions with five couples.
Fathers Network
www.fathersnetwork.org.
16120 NE 8th Street
Bellevue, WA 98008-3937
425-747-4004 x218
jmay@fathersnetwork.org
Supports fathers as caregivers of children with HIV/AIDS. New monograph coming out to heighten awareness among health care providers on the needs of fathers raising children with HIV/AIDS. Developing a curriculum for providers on how to engage and support fathers caring for children with HIV/AIDS.
François-Xavier Bagnoud Center (FXBC)
www.fxbcenter.org.
University of Medicine & Dentistry of New Jersey
30 Bergen Street, ADMC #4
Newark, NJ 07103
973-972-0410
fax: 973-972-0399
Pages with practical information on caring for children with HIV/AIDS. In support of the National Pediatric and Family HIV Resource Center, the program delivers care that is community-based, child-centered, and family-focused.
Health Cares Exchange Initiative (HCEI)
www.HCEI.org.
PO Box 131
The State House
Boston, MA 02133
617-488-7780
Creates inclusive networks for caregivers, including AIDS caregivers, in diversely affected geographic areas and then fosters information and personnel exchanges between them. HCEI works to encourage caregiver collaboration, enhance community-based care, and educate caregivers about stress management and capacity building.
International Association of Physicians in AIDS Care
www.iapac.org.
33 North LaSalle Street
Suite 1700
Chicago, IL 60602-2601
312-795-4930
fax: 312-795-4938
iapac@iapac.org
Addresses the needs and concerns of HIV-treating physicians, other healthcare professionals, and people living with HIV/AIDS through a journal and information published on their website.
National Council on the Aging (NCOA) Family Friends Resource Center
409 3rd Street SW
Washington, DC 20024
202-479-1200
fax: 202-479-0735
Family Friends HIV-Positive Babies and Families project provides support and education regarding safe health practices and practical support for the care of HIV infected children.
Professional Registry of Nursing
www.prninc.net.
19033 W Valley Hwy
Suite D-105
Kent, WA 98032
800-776-1101x3
fax: 7939720399
AskPRN@prninc.net
Contracts with the State of Washington to provide training for family caregivers and home care aides to meet state continuing education requirement. Training includes Fundamentals of Caregiving, which has a section on HIV/AIDS and HIV/AIDS: Together through Knowledge We Can Win the War.
Project Inform
www.ProjectInform.org.
205 13 Street
#2001
San Francisco, CA 94103
415-558-8669
Provides free, confidential, empowering information on diagnosis and treatment for people with HIV, their caregivers, and health care and service providers. Written materials, outreach and education, advocacy, and a treatment hotline at 800-822-7422.
Shanti
www.shanti.org.
730 Polk
San Francisco, CA 94109
415-674-4700
fax: 415-674-0370
Kairos Counseling Program of Shanti offers individual and group counseling for partners, friends, family, and professional caregivers on caregiving and grief and loss. The resources section of their website has a long list of organizations that primarily serve clients and also offer some support to caregivers.
Shanti Los Angeles
www.lashanti.org.
1616 N LaBrea Avenue
Los Angeles, CA 90028
323-962-8197
Services include support groups in English and Spanish focusing on the following topics: significant others, bereavement, sero-different, HIV-negative; Positive Living for Us (PLUS) weekend seminars for people with HIV and their loved ones to provide information and support; and the Kairos Counseling Program, which provides individual and group counseling to caregivers on caregiving and grief and loss.
Shanti of SE Alaska
PO Box 22655
Juneau, AK 907-463-5665
Shanti@ptialaska.net
Shanti Seattle
www.seattleshanti.org.
PO Box 20698
Seattle, WA 98102
206-322-0279
seashanti@aol.com
Emotional support provided by highly trained and supervised peer counselors. Serves people with HIV/AIDS, partners, family members, friends, caregivers.
Upaya Zen Center
www.upaya.org.
1404 Cerro Gordo
Santa Fe, NM 87501
505-986-8518
Offers training for professional caregivers who work with the dying, and the following retreats for professional and family caregivers: Healing in Nursing Retreat; Care of the Caregiver Retreat.
Zen Hospice Project
www.zenhospiceproject.org.
273 Page Street
San Francisco, CA 94102
415-863-2910
fax: 415-863-1768
Offers the following workshops: Being with Dying, Death and Grief; Grace in Dying: Spiritual Dimensions of Care-giving; Being a Compassionate Companion.
Training
American Red Cross
www.redcross.org.
National Headquarters
8111 Gatehouse Road
Falls Church, VA 22042
Training and educational programs for caregivers varies by chapter. The Seattle/King County chapter provides interactive classes for caregivers with videos, group work, discussions, speakers, and handouts. All participants receive the Washington State DOH manual KNOW: HIV Prevention Education.
Home Care Companions
www.homecarecompanions.org.
1320 Divisidero Street
San Francisco, CA 94115
415-824-3269
info@homecarecompanions.org
Enables people living with AIDS to receive sufficient, appropriate, affordable health care in their own homes by training family, friends, and partners in basic home care nursing skills. Free training, AIDS Home Care Skills Training, led by volunteer health care professionals. Serves the San Francisco Bay Area. Holds train-the-trainer sessions for other organizations wanting to start similar programs in other communities.
MCP Hahnemann University
www.mcphu.edu/~AIDSinfo/default.html.
Institute for Academic Informatics
Broad & Vine, MS 449
Philadelphia, PA 19102-1192
215-762-7185
aidsinfo@auhs.edu
On-line workshop manual, HIV/AIDS Information: Putting the Pieces Together. Includes a section on caregivers.
Professional Registry of Nursing
www.prninc.net.
19033 W Valley Highway
Suite D-105
Kent, WA 98032
800-776-1101 x3
AskPRN@prninc.net
Contracts with the State of Washington to provide training for family caregivers and home care aides to meet state continuing education requirement. Training includes Fundamentals of Caregiving, which has a section on HIV/AIDS, and HIV/AIDS: Together through Knowledge We Can Win the War .
Videos
Aquarius Productions
www.aquariusproductions.com.
Wide Time: An HIV Odyssey.
Fanlight Productions
www.fanlight.com.
All films are for sale or one-day rental
Alone Together, Both Ends Burning, Rude Awakenings, Too Little Too Late.
The National Pediatric & Family HIV Resource Center
www.pedhivaids.org.
Videos for purchase, many in Spanish
It's Your Choice:
Pediatric HIV Clinical Drug Trials
What's Best for You: Families Talk about Disclosure
Health Care for Haitian Families (in Creole with English sub-titles)
You're in Charge: Your Child's Health Care (all chronic illnesses).
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 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.
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.
Caregiver.com: Today’s Caregiver Magazine - www.Caregiver.com. Online caregivers magazine with specific articles on HIV/AIDS.
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.
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.
Healing Well - www.healingwell.com. AIDS resources, information, books, chat room
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.
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.
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.
Queer.net - www.queernet.org. Online support communities for many groups, including caregivers of people with HIV/AIDS.
Shanti - www.shanti.org. Listing of organizations that provide direct services to people living with and otherwise affected by HIV/AIDS.
Last Updated 1/18/06 at 10:10 AM
