AIDS attacks more than the immune system of HIVinfected
people. AIDS also attacks the well-being of
families by draining their relationships as well as their
economic, emotional, spiritual, and social resources.Facts and recommendations in this publication may no longer be valid. Please look for up-to-date information in the OSU Extension Catalog: http://extension.oregonstate.edu/catalo

Hare, Jan

Oregon State University. Extension Service

Undetermined

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FBuildingCommunitySupportfor amilies of People with AIDSHome is the place where, when you have to go there, theyhave to take you in. — Robert FrostJ. Hare50¢EC 1372Reprinted January 1993AIDS attacks more than the immune system of HIV-infected people. AIDS also attacks the well-being offamilies by draining their relationships as well as theireconomic, emotional, spiritual, and social resources.As of summer 1990, 31 of the 36 Oregon countiesreported cases of AIDS. Considering that the propor-tion of Americans who know someone with AIDS hasincreased from 4 percent in 1986 to 6 percent in 1987and to 7 percent in 1988, it can be assumed that inevery county there are likely to be family members andfriends of people with AIDS.Many of these families and loved ones feel that they arestigmatized by their closeness to someone with thedisease. Families may be afraid to identify themselvesand their need for help, fearing they will be rejected ordiscriminated against in their own communities. Manyof them suffer in silence.Jan Hare, Extension family life specialist, Oregon StateUniversity.How do we make our communities supportiveenvironments for families of people with AIDS?First of all, we need a broad definition of “family.”There are many types of families:• families of origin (the families we are born into)• families of procreation (the families we marry into)• unmarried couples in committed relationships• friendship networks• a close-knit group of caregivers which often evolvesafter an AIDS diagnosis. (This group may include apartner, spouse, friends, relatives, and health careprofessionals.)What would your community doin these situations?Joe and Irene live in a very smalltown. They have five children, all ofwhom are grown and living awayfrom home. Their youngest sonJohn has been diagnosed withAIDS. He is currently strugglingthrough his third episode ofPneumocystis pneumonia, a life-threatening complication of AIDS.Joe and Irene, accompanied by oneof their daughters, are again travel-ing to Portland to help John. SinceJohn’s diagnosis nearly two yearsago, Joe and Irene have told theirfriends and relatives that their sonhas an incurable cancer. TodayJohn tells Joe and Irene that he nolonger feels he has reason to stay inPortland. He would like to comehome to his parents’ house to die.Joe and Irene, who love their son,are painfully torn. They believe thatif John comes home, people in thecommunity will learn his truediagnosis. Irene serves on the schoolboard; Joe and Irene are bothprominent professionals in thecommunity. They feel certain theirpersonal and professional lives inthis community will be irreparablydamaged. While they very muchwould like to care for John at home,they decide that it will not bepossible. Three of John’s siblingsare very angry with their parents’decision. One of them leaves collegeand goes to Portland to care for herbrother until his death. The familyis now riddled with conflict.Eleanor lives in a small coastal townin Oregon. She recently has becomea grandmother for the third time.Her 28-year-old daughter, Jenni, isa single parent of two school-ageboys and a newborn daughter. Latein her pregnancy Jenni learned thatshe is HIV infected. Her baby isshowing symptoms meeting thedefinition of AIDS. Eleanor grievesfor her daughter and worries aboutJenni’s capacity to care for heryoung sons and an ill baby. Eleanorconsiders moving to Jenni’s town orbringing Jenni and the children toher own home. Where can she turnin this small coastal community forinformation and helpful advice?If Joe and Irene lived in your town,could they have brought their sonhome without feeling rejected by theircommunity?If Eleanor lived in your town, couldshe have told her friends, her co-workers, and her church members ofher troubles? How would they haveresponded?Challenges of AIDSFamilies of people with AIDSgenerally must confront many ofthe following challenges:• Adjusting to the life-threateningdiagnosis of someone they love.• Dealing with their fears ofcontracting AIDS.• Accepting the disclosure of afamily member’s gay identity.• Accepting the disclosure of afamily member’s drug use.• Accepting that their child wassexually active.• Managing conflict inside thefamily.• Confronting a time-limited needfor emotional reconciliation withthe ill family member.• Beginning to grieve many im-pending losses.• Shifting family roles.• Providing emotional support andphysical care to the ill member.• Managing the multiple difficul-ties of the health care system.Some ways you can helpDon’t ask the family how thedisease was contracted. Such aquestion is posed out of curiosityrather than to a desire to providesupport. The central feature of thesituation is that the family has alife-threatened member.If the ill person is a gay man, youcan provide a safe atmosphere forthat disclosure by expressing com-passion and withholding judge-ment. In such a case there also maybe a loving partner who is part ofthe family. Extending your concernand support to all significant peoplein the life of the person with AIDSmay help them join together intheir sadness.In your own words, say to thefamily, “I recognize that you mustbe having many difficult feelings. Ihope you know that I care aboutyou and I am ready to listen if youwould ever like to talk.”Remember that most people withAIDS are young. Their illness anddeath are out of step with theexpected life cycle. Children diebefore parents;  parents die leavingyoung children, and several peoplein the same family network some-times die in the same time period.Community support groups forsurvivors may help them go on withtheir lives.Most important, be aware thatfamilies of people with AIDS arefamilies in grief. Grief is a long andarduous process which generallybegins long before the anticipateddeath occurs. The single mosthelpful gesture you can make forsomeone in grief is to allow thatperson to express pain;  try not tosay or do anything that will closeoff such expression. It is almostalways best simply to be present forthe other person. Richard Kalish, awell-known author on grief-relatdtopics, said it like this, “Don’t justdo something. Stand there!”What Is AIDS?AIDS, a medically diagnosed disease, is caused by the human immunodeficiencyvirus (HIV). The virus is harmful only if it gets into the blood stream. Once it isthere, it attacks and slowly destroys the body’s immune system, allowing  otherinfections to invade the body. These infections cause serious illnesses, such aspneumonia and cancer. The HIV virus also can damage the brain. There is not yeta known cure for AIDS.The virus that causes AIDS also produces illnesses called AIDS related complex(ARC). Typical symptoms are prolonged swelling of lymph nodes, chronic fatigue,fever, weight loss, night sweats, and abnormal blood counts. The ARC complexcan be fatal.How is AIDS spread?AIDS is preventable by the choices you make. There are three main ways the AIDSvirus is spread:• By having unsafe sex with an infected person.• By sharing needles and syringes with drug users.• From mother to fetus during pregnancy, or to the baby during delivery or breastfeeding if the mother is infected.Fortunately, AIDS is hard to catch. There is no evidence that it is spread throughcasual contact such as shaking hands, social kissing, coughing, or sneezing. No onehas ever caught AIDS by casual contact in the workplace, schools, swimming pools,stores, or the home.Where you can get more information about AIDSNote: The AIDS Hotline for information and referrals is 1-800-777-2437.Extension Service, Oregon State University, Corvallis, O.E. Smith, director. Produced and distributed in furtherance of the Acts ofCongress of May 8 and June 30, 1914. Extension work is a cooperative program of Oregon State University, the U.S. Department ofAgriculture, and Oregon counties. Oregon State University Extension Service orders educational programs, activities, and materialswithout regard to race, color, national origin, sex, age, or disability as required by Title VI of the Civil Rights Act of 1964, Title IX ofthe Education Amendments of 1972, and Section 504 of the Rehabilitation Act of 1973. Oregon State University Extension Service isan Equal Opportunity Employer.Some information in this publication was adapted from Aids and Families, edited by Eleanor Macklin, 1989.Baker CountyHealth Department523-8211Benton CountyHealth Department757-6835Clackamas CountyHealth Department655-8471, Ext. 7543Clatsop CountyHealth Department325-8500Clatsop CountyAIDS CoalitionAstoria325-4321Columbia CountyHealth Department397-4651Coos CountyHealth Department396-3121, Ext. 329GALON, Coos Bay269-4183Crook CountyHealth Department447-5165Curry CountyHealth Department247-7011, Ext. 265Deschutes CountyHealth Department388-6616Central OregonAIDS Support TeamBend389-4330Douglas CountyHealth Department440-3500Gilliam CountyHealth Department384-2061Grant CountyHealth Department575-0429Harney CountyHealth Department573-2271Hood River CountyHealth Department386-1115Jackson CountyHealth Department776-7335Rogue AIDS ProjectMedford772-4380Jefferson CountyHealth Department475-4456Josephine CountyHealth Department474-5325Klamath CountyHealth Department882-8846Klamath Co. HIV/AIDS Support &Educational CouncilKlamath Falls883-2437Lake CountyHealth Department947-6045Lane CountyHealth Department687-4013Shanti in Oregon,Inc, Eugene342-5088Willamette AIDSCouncil, Eugene342-5088Lincoln CountyHealth Department265-6611, Ext. 2379or 265-4179Linn CountyHealth Department967-3888Malheur CountyHealth Department889-7279Marion CountyHealth Department588-5342Mid-Oregon AIDSSupport Services,Inc., Salem363-4963Morrow CountyHealth Department676-5421MultnomahCountyHealth Department248-3406Cascade AIDSProject, Portland223-5907Oregon HispanicAIDS ProjectPortland228-4131Oregon MinorityAIDS CoalitionPortland274-1305Polk CountyHealth Department623-8175Tillamook CountyHealth Department842-3900Umatilla CountyHealth Department276-3211Blue MountainAIDS TaskForce, Pendleton278-1529Union CountyHealth Department963-1013Eaglecap AIDSSupport TeamLa Grande962-3384Wallowa CountyHealth Department426-3627Wasco-ShermanCounty HealthDepartment296-4636WashingtonCounty HealthDepartment648-8881Wheeler CountyHealth Department763-2725Yamhill CountyHealth Department472-9371, Ext. 525

Building community support for families of people with AIDS

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Building community support for families of people with AIDS

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