“i'm just glad that i'm here”

‘‘I’m Just Glad That I’m Here’’:Stories of Seven African-American

HIV-Affected GrandmothersCynthia Cannon Poindexter, MSW, PhD

Nathan L. Linsk, MA, PhD

ABSTRACT. This article reports the experiences of seven African-American HIV-affected grandmothers who participated in a qualitativestudy in Chicago, Illinois in 1996. Showcasing their stories highlightsthe existence and concerns of a population which is frequently over-looked. These respondents’ attitudes about caregiving were mixed: theyexperienced it as a mixture of burden and honor. In the face of multiplestressors, these grandmothers demonstrated remarkable resilience, spir-ituality, and a commitment to kin. Even though the African-Americangrandmothers were heroic and dedicated, they may still need supportfrom social service and health care systems. Grandparent caregiving inthe HIV epidemic will likely increase, and practitioners and policymakers should be prepared to better address the needs of this growingpopulation. [Article copies available for a fee from The Haworth DocumentDelivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpress inc.com <Website: http://www.haworthpressinc.com>]

KEYWORDS. Gerontology, HIV, AIDS, grandparents

This article reports on the experiences of seven African-Americangrandmothers who are parenting grandchildren because of the pres-ence of HIV in the family. Kinship care, increasingly common in childwelfare services in the U.S. (Minkler & Roe, 1993), is especially

Cynthia Cannon Poindexter is Assistant Professor, Boston University School ofSocial Work, 264 Bay State Rd., Boston, MA 02215 (E-mail: [email protected]). NathanL. Linsk is Associate Professor, Jane Addams College of Social Work, University ofIllinois at Chicago, 808 S. Wood St., M/C 779, Chicago, IL 60612.

Journal of Gerontological Social Work, Vol. 32(1) 1999E 1999 by The Haworth Press, Inc. All rights reserved. 63

64 JOURNAL OF GERONTOLOGICAL SOCIAL WORK

relevant for HIV-related programs and policy. An increasing numberof HIV-affected1 children and adolescents are being cared for by olderrelatives because a caregiving parent is HIV-infected. These minors,commonly referred to as ‘‘AIDS orphans’’ (Michaels & Levine,1992), are emotionally and socially affected by the HIV-related illnessor death of a parent or other relative. Some of these HIV-affectedchildren are also HIV-infected. Caring for an HIV-infected grandchildor raising a grandchild whose parents are ill or deceased is a stressfuland unexpected event for most custodial grandparents, who are notable to retire from parenting (Draimin, 1993; Forsyth, 1995; Levine,1993; Levine & Dane, 1993).Several authors have documented that HIV disease has dispropor-

tionately affected persons in racial and ethnic minorities (Anderson,1990; Brown, Mitchell, & Williams, 1992; Jenkins, 1992; Magana &Magana, 1992; Michaels & Levine, 1992 & 1993; Thomas & Quinn,1994). Therefore, when children are orphaned by HIV disease, theolder persons who are becoming caregivers are likely to be membersof minority groups (Joslin, 1995). This population of HIV-affectedolder minority caregivers has not had the public platform that othergroups have been able to partially achieve and thus may experienceadditional struggles to be understood and connected.This article briefly explores the context of grandparent caregiving

and specific concerns of HIV-affected older relatives who are surro-gate parents, then reports the experiences of seven African-AmericanHIV-affected grandmothers who participated in a qualitative study inChicago, Illinois. The purpose of presenting excerpts from their narra-tives is to highlight the existence and concerns of this population,which are frequently overlooked in literature, policy, and practice.

GRANDPARENT CARE

In the past decade, the number of caregivers who are grandparentsof the children under care has increased by 40% (Mullen, 1995).Approximately 3.2 million minor children in the United States cur-rently live with grandparent caregivers (AARP, 1995; Minkler & Roe,1993; Census, 1993). The prevalence of grandparent caregiving isprobably higher than that presented in official records because manyolder caregivers do not apply for public assistance programs in whichthey would be counted as guardians (Minkler & Roe, 1993).

Cynthia Cannon Poindexter and Nathan L. Linsk 65

The majority of older persons who are acting as surrogate parents totheir grandchildren are women (Chalfie, 1994). The phenomenon dif-fers by ethnicity as well: over 12% of African-American children livewith grandparents, as opposed to 4% of White (Census, 1991). Ex-tended family care of children is not a new phenomenon in the Afri-can-American community, where intergenerational kin networks andchild-centered bonds are strong and valued (Boyd-Franklin, Aleman,Jean-Gilles, & Lewis, 1995; Hill, 1993; Stack, 1974; Staples & John-son, 1993) and where grandmothers in particular have often been asafety net for children. Recently, however, African-American grand-mothers are playing a more active and more frequent role in rearinggrandchildren (Minkler & Roe, 1993; Okazawa-Rey, 1994).Minkler and Roe (1993) estimated from their studies that one-third

of grandparent-caregiver households are ‘‘skipped generation fami-lies’’ meaning that neither parent is currently present and the grand-parent is the primary caregiver or guardian. Chalfie (1994) estimatedthat there are approximately 551,000 midlife and older adults inapproximately 353,000 households which contain grandparents andgrandchildren with neither parent present. Of course, ‘‘skipped’’should not imply that the family members in the middle layer are notmissed or mourned by the generations above and below them.

HIV-RELATED GRANDPARENT CAREGIVING

HIV disease nationally has had a devastating effect on women ofchildbearing years, age 25 to 44 (CDC, 1994), and therefore on chil-dren (Levine, 1990). HIV is spreading almost six times as quicklyamong women as among men (CDC, 1994) and it is expected thateach year 3,000 children will be born to HIV-infected mothers (Heslin,1993). Estimates are that three-fourths of HIV-positive women havechildren and that the majority of these mothers have primary or soleresponsibility for child care (Forsyth, 1995). Grandparent care is morelikely when the HIV-positive mother is unavailable due to homeless-ness, substance use, incarceration, illness, or death (Caldwell, Masco-la, Smith, & Thomas, 1992; Schable, Diaz, Chu, & Caldwell, 1995).With the rate of HIV infection increasing, there will likely be a corre-sponding increase in the number of HIV-affected minors who needsurrogate care. Researchers estimate that, by the year 2,000, mother-less HIV-affected children and adolescents nationally will range from


72 to 125 thousand in number (CDC, 1994 ; Forsyth, 1995; Michaels &Levine, 1992).Older HIV-affected caregivers tend to deny their own needs, with-

draw from social interaction, and seek help for themselves late in theprocess if at all (Ogu & Wolfe, 1994; Perreault et al., 1992; Reidy,Taggart, & Asselin, 1991). Some older HIV-affected caregivers arecaring for one or more family members who need attention in additionto the persons with HIV, such as another older person, a disabled adultchild, and/or other grandchildren or great-grandchildren, and are there-fore often caught between multiple sets of responsibilities (McKinlay,Skinner, Riley, & Zablotsky, 1993; Ogu & Wolfe, 1994). Many HIV-affected grandparent caregivers are anticipating the death of an adultchild from AIDS or are already grieving such a death, during a time inwhich they are parenting grandchildren and may be anticipating thedeath of one of these minor children as well (Brabant, 1994; Gutheil &Chichin, 1991; Joslin, 1995; Levine, 1995a).HIV has brought a new meaning to the term ‘‘skipped generation

families,’’ used previously in the context of crack and cocaine use(Minkler & Roe, 1993). Grandparents becoming parents again in thewake of the loss of adult children to HIV has ‘‘distorted the typicalgenerational division within families’’ (Levine-Perkell, 1996, p. 121).Levine (1995b) calls attention to two ramifications of the impact ofHIV/AIDS on the middle generation: (1) elder women who are over-burdened with care for everyone will be getting worn out and morefrail; and (2) since the young mothers are dying, we will experience alost generation of grandmother caretakers in the future.The children with whom these older relatives are living have their

own emotional and physical challenges. When a child of a man orwoman with HIV disease arrives at a grandparent’s home, that minoris likely to have reactions of grief, trauma, anger, displacement, worry,shame, and fear. Since some of these children have HIV disease aswell, they have their own life threatening conditions and their ownunique emotional concerns (Levine & Dane, 1993). All of the stressesfelt by the children and parents in the family will likely have an impacton the grandparent caregivers, who are facing an unpredictable andstigmatized serious illness while perhaps feeling helpless and fright-ened.


METHOD

The seven grandmothers in this discussion were part of a qualitativestudy2 of twenty older minority HIV-affected caregivers in the Chica-go, Illinois area who participated in one-time open-ended interviewsfrom January to August, 1996. Older minority persons were eligible ifthey were caregivers for adult children who were HIV-infected orgrandchildren who were HIV-infected or who had relatives with HIV.Most of the respondents were caring for adult children with HIV. Thepurpose of considering the seven grandmothers separately in this ar-ticle is to explore the unique experience of grandparenting in thecontext of HIV disease. Interviewees were recruited through fliersdistributed in HIV-related social and health agencies.A checklist was used as an interview guide. Interviews were audio-

taped, with the written consent of the respondents, and transcribedverbatim.3 Field notes, observations, researcher comments, method-ological difficulties and successes, and a summary of the respondent’sstory were all added to the document containing the transcription ofthe tape (as per Lofland & Lofland, 1995) and included in the codingand data analysis. Additional details concerning recruitment, contentof interviews, sampling methodology, and sample delineation appearelsewhere (see Identifying Reference 1997).

SAMPLE CHARACTERISTICS

The seven respondents are African-American grandmothers whowere between the ages of 46 and 60 at the time of the interview; theaverage age was 55. None of them would be considered ‘‘elderly’’ bygerontological standards, but as grandmothers their experiences andconcerns were intergenerational. It was their stage rather than their agewhich characterized them. Six of them were divorced or single andone lived with a male lover. All seven were the primary caregivers ofminor grandchildren in their homes. As Table 1 illustrates, all of thesechildren and grandparents were affected by having HIV in the family.Four interviewees were taking care of an HIV-infected minor grand-child; in each of these cases, the mother of the minor was HIV-infectedas well or had died from AIDS. Two were caring for HIV-negativegrandchildren whose parents had AIDS. The other woman was caring


for minor grandchildren who were HIV-negative and had anotherrelative with HIV disease who were living in the house with them.

RESULTS:THE GRANDMOTHERS’ STORIES

The following seven vignettes sketch the grandmother’s situationswhen the interviews were conducted in 1996. The interviews wereminimally structured to allow the respondents to tell their stories intheir own ways. Through summaries and interview excerpts we at-tempt to represent their most salient concerns. Following are briefscenarios describing each, headed by a descriptive quote which char-acterizes their self report.‘‘There’s too much pain.’’ Daisy, age 46, lives in a public housing

facility and talks of feeling isolated and unsafe there. She took care ofher daughter Anna as she was dying from AIDS. Daisy is now thesurrogate parent for LaKia, Anna’s 11 year-old HIV-infected daughter.LaKia recently figured out for herself that she has HIV and that hermom died from AIDS. Daisy says that although she and LaKia havesome struggles which stem from Daisy’s being overprotective, she andLaKia are very close and have a good relationship. Speaking of LaKia,she says: ‘‘The greatest gift that I have, you know, I do have someonewho loves me unconditionally. . . . She’s the one.’’Daisy also had another adult daughter who died from anorexia a

few years ago. During the month before the research interview, Daisyhad just experienced two other significant deaths from AIDS: herbrother, Jackson, and her best friend, Tonya. Daisy’s grief is increasedby the fact that her former support system has abandoned them be-cause of HIV:

I don’t have friends, family. None of them want to have anythingto do with us. . . . Because of her illness. . . . My daughter, myonly surviving daughter told me she was sick and tired of me. . . .it’s annoying how, I had to remove a lot of things, like familypictures. I had to take all that stuff down. . . . There’s too muchpain. Too much pain, you know.

Daisy, however, has no regrets about caring for LaKia. She feelsthat she was meant to be a caregiver:


I feel honored that I was chosen. I have the heart, I have thepatience. I put myself into the patient. I really internalize it to agreat extent. I would want to have somebody just like me. That’show much I’m into it. . . . But I don’t regret it. I don’t regret onebit of it. I thank God, I always thank God I was chosen. . . . Idon’t say ‘‘why me?’’ I don’t get bitter. In other words, I have apurpose, I’m on a mission. And I have to carry on.

When asked about how she coped with rejection from her family,Daisy credited her connection with AIDS service organizations andthe meaning she gets from helping others:

I walk through other doors, in environments where we weresharing things in common, we don’t have to have masks andcamouflages. We didn’t have to go in there, everything perfect,you know. . . . I always have to feel that I’m giving somethingback, as well as taking something that I can use also.

‘‘I likes what I do.’’ Stella, age 57, lives in a public housing projectwith her four year old HIV-infected granddaughter, Kiki. Stella saysthat she is distrustful of her neighbors and afraid to be outside herapartment at night. Stella was aware that her adult daughter was usingdrugs and living on the streets, but not that she was HIV-positive.Until she was called by the hospital to come get the newborn, she didnot know that her daughter was pregnant. Stella is angry about notbeing told by the hospital and doctors about Kiki’s illness right away.Stella is disappointed in and angry at her daughter and says that shewill not consider caring for her if she becomes ill and tries to comehome.Kiki has been very ill all of her life, until recently requiring that she

be fed liquid supplements through her nose, which was time consum-ing and complicated. Stella seems to get much meaning and signifi-cance out of her caring for her grandchild: ‘‘Yes, I love it. . . . I love it,I likes what I do.’’ She says she cares for Kiki because ‘‘ . . . this is ababy. She didn’t ask for this, she don’t know, she don’t understandthis.’’ Stella stated she would provide care to Kiki ‘‘as long as God letsboth of us walk around. If I got the strength to give it to her, she gotit.’’Stella spoke of being sustained by religious faith but said about

HIV, ‘‘I guess I just wish that God didn’t put this up on peoples.’’


However, despite her struggles with housing, finances, grief, and car-ing for a sick child, she felt that God had blessed her:

I don’t know nothin else He would have done for me. Oh, yeah, Icoulda won the million dollar lottery, but I probably wouldn’tknow what to do with it! Other than that, you know, I don’t knowanything that He have deprived me of. I never had a hungry day.. . . My life can’t be no better.

‘‘I’m just glad that I’m here.’’ Thelma, who would only give herage as ‘‘over 50,’’ takes care of six children who are related to her andlive with her. One of these children is her ten-year-old HIV-infectedgranddaughter Selene. Thelma’s HIV-positive daughter (Selene’s moth-er) is in jail because of having killed Selene’s father during a domesticviolence incident, and is trying to get released on clemency. Thelmalearned of Selene’s HIV status when Selene was hospitalized. She isangry at the doctors because she thinks that they were not aggressiveenough about finding a diagnosis and that earlier intervention mighthave helped. Thelma knows little about HIV; she was given a book butdidn’t read it. Selene found this book and read it and therefore con-cluded she was HIV-infected. Thelma says that she has faith thatSelene will live and that she tries not to think about Selene’s future,but she is aware that she may not see Selene grow up. She says that sheputs the doctor in God’s hands and trusts in God to take care of Selene.Thelma says that it has been a challenge to raise children and

grandchildren, and that she would not have wanted to do anythingelse. She and Selene have had struggles over Selene’s not eating ortaking her medication, and Thelma worries about her a great deal.Thelma says that she is nevertheless thankful to be in the position ofproviding care and could not envision another role for herself:

The most joyful thing is that I’m alive and I’m able to do it. Idon’t see anything real stressful, you know, with me taking care.I’m just glad that I’m here. . . . I don’t really see nothing else thatI could do.

‘‘I want to take care of my own.’’ Lacy, age 60, has been caring forher six-year-old HIV-positive grandson, Adam, since his birth.Adam’s mother Jen has HIV as well and is in the home intermittently,coming home for care when she is ill. Lacy cares for a number of other


relatives. She receives stipends for caring for another daughter who is40 years old and is impaired by a stroke, and she is a relative caregiverfor several grandchildren who are in kinship foster care. Lacy says thatshe is sustained by her faith and others’ need for her. She embraces theduty of caregiving for her loved ones. She said she would:

. . . provide care for as long as I can. . . . to me it’s just anotherthing. And it’s something I want to do. It’s something I don’twant nobody else to do as long as I can do. I want to take care ofmy own. . . . I enjoy helping other people. I don’t enjoy seeingthem sick, but I enjoy helping them. And I rather help them, thanhave anyone else. . . . You want to make ’em comfortable. Youwant to make ’em happy.

Lacy related her spiritual struggle after learning that her daughterand grandson have HIV:

I’ve kind of accepted what’s wrong. It was hard at first. They firsttold me I went to my knees. I just went to the Lord. And prayed.Until I got my strength back. And I think that what ever God’swill, thy will be done. In my life. No matter what. Sometimes lifeseems unfair and unfit. But He’s a just God. He don’t do no moreto you than He do to others and what He do for others. You justgot to accept His will. That’s the only way that you can acceptthings and go on. . . . Because you cannot change it.

‘‘You’d be surprised what you can stand.’’ Alma, age 57, lives inpublic housing with her teenage grandson, the oldest son of her onlydaughter. The grandson’s father has HIV disease and lives in anotherpart of town. Alma’s adult son Mike died from AIDS a week beforethe research interview. Alma and Mike had been estranged for yearsover his drug use, but she drove to Mississippi to bring him home tolive with her as soon as she learned that he was ill. Alma and Mikeseemed to have mended their relationship as he was dying. Almaprovided personal care for Mike by herself in the apartment. Therewere no social services until a few days before he died, when hospiceprovided a hospital bed and oxygen. Prior to that she was getting noassistance from anyone but her grandson. She has disclosed the pres-ence of HIV to no one but Doris, her grandson’s other grandmother,because they can talk about having sons with AIDS. When asked how


she could cope with her son’s illness and death without the support offriends and family, Alma simply replied: ‘‘You’d be surprised whatyou can stand and what you can take.’’Alma spoke of being dissatisfied with the condition of her apart-

ment complex and worried about the crime in the neighborhood, butsaid that she was tired of fighting for a better place. Alma identifieswith her role as mother and grandmother and says that she does notresent giving care, but that she’s tired of being strong. Alma explainedthat when she was young, when someone did not have children, shefelt sorry for them. Now, she said, she realized that people withoutchildren are blessed. She said that she felt that not having children wasprobably better because her kids could always depend on her to takecare of them, but she could not depend on them to do the same.‘‘They give me somethin, they give me strength.’’ Sheryl, age 55,

was the primary caregiver for her daughter, Shanti, who died fromAIDS. Sheryl and her male lover are now raising seven children oftwo HIV-positive female relatives (Sheryl’s deceased daughter and herincarcerated cousin). In addition to these responsibilities, Sheryl alsocares for an adult son with retardation. Sheryl also had previouslyexperienced the death from AIDS of a male cousin.The oldest grandchild under their care is a 15 year-old boy who is

incarcerated for truancy. Sheryl is really stressed by her responsibilityfor this 15 year-old, and says that he is an example of how the youngergeneration does not live up to their potential. She is adamant about notwanting to take on any more caregiving or any more child rearing.However, she says that she gets her energy and her purpose fromtaking care of the seven grandchildren: ‘‘I guess I be here for the kids,I guess if I hadn’t had the kids, I probably woulda died. . . . Theyworry me, they bad, but they give me somethin, they give mestrength.’’Despite her heavy caregiving responsibilities and grief over her

daughter’s death, Sheryl was trying to learn how to drive so that shecould begin to volunteer for an AIDS service organization: ‘‘I say Iwould like to work with AIDS foundations. Because I’ve been throughit. And, you know, if they have someone to talk to . . . [does not finishthought because she is crying].’’‘‘I want my life to myself.’’ Vicki, age 54, invited her grown son

Keith to live with her after she learned that he was HIV-positive. Priorto coming home he had been in jail for six months for a drug-related


traffic accident. She reports that they have a close relationship and thatshe is worried about him. Also in Vicki’s house are three grandchil-dren: a four year-old whose mother also lives there and two teenagedgrandsons by another daughter, for whom Vicki has been the guardianfor 13 years. Keith wants to get custody of four of his children andbring them into the house also. Although Vicki feels that it is her dutyto care for her family members, she opposes this plan because shefeels that it is time that she had time to herself. She says that she’s tiredof being a caregiver, especially of grandchildren:

I said ‘‘I will help you with them, but you have to get your ownplace, and you have work it out, and I will help you.’’ I didn’twant to be responsible. I want my life to myself. I’m 54, nowwhen am I gonna get me some life in my life? . . . I thought aboutjust going away and just being by myself and then I thought Ibetter not do that, because why would I leave all of this? But Iwould like to live alone.

GRANDMOTHERS’ MAJOR CAREGIVING THEMES

Generalizing themes from the above summaries must be done tenta-tively because of the size of the sample. However, the richness of thedata suggests something about what HIV-affected African-Americangrandmothers may be facing. The most salient themes were: HIV-re-lated stigma, complex caregiving situations, mixed reaction to the carerole, and spirituality and resilience. These themes were also present inthe larger sample, but they have particular salience when they occurwith grandparents, whose primary care role differs from usual grand-parenting. (For more information on the experience of stigma re-sponses, reasons to care, and spirituality in this population, see Identi-fying References 1998a, b, c.)Stigma. ‘‘AIDS-related stigma’’ (Herek & Glunt, 1988) is a type of

discrimination and prejudice which is more intense than that experi-enced by persons with other types of illnesses or social problems. Thenegative psychological and social effects of HIV-related stigma havebeen felt by HIV-infected persons (Crandall & Coleman, 1992; Lang,1991; Laryea & Gien, 1993; Longo, Sposs, & Locke, 1990; Money-ham, et al., 1995), children in HIV-affected families (Fair, Spencer, &Wiener, 1995), and caregiving parents of HIV-infected adults (McGinn,


1996). The reality of HIV stigma was evident in the stories of thesecaregivers through their isolation and lack of confidants. As Daisy putit, the ‘‘masks and camouflages’’ which are necessary can stop some-one from asking for medical social, spiritual, or psychological support.Complex caregiving situations. A number of these grandmothers

were notable in the complexity of their caregiving for multiple carereceivers. In fact it was sometimes difficult for the interviewers tounderstand the relationships between the caregivers and the variedpeople they cared for. Lacy and Vicki present examples of individualswhose caring for others has become an occupational role in the family,although it is notable that Vicki is able to set a boundary about addingto the care mix. The sense of caregiving being a positive achievementis an underlying theme in several of these personal stories. Althoughseveral of the caregivers spoke of opportunity losses due to the careprovided, it is striking how much they claim that they feel their care-giving is a good thing for them and their families.Mixed response to caregiving. As was found in studies of addic-

tions-related caregivers, these respondents experienced a mixture ofburden and honor. They were glad and grateful to provide care, butwere feeling tired and isolated. Their reports at feeling pleased to be ofuse or on a mission to be a good caregiver were peppered with ac-counts of being alone, sad, frightened, and rejected.Spirituality and Resilience. Despite sometimes longing for more

freedom, struggling with financial or housing problems, feeling disap-pointed in the ‘‘skipped generation,’’ grieving over multiple losses,experiencing anxiety and fear about the future, and being responsiblefor multiple care recipients, these grandmothers demonstrated strength,spirituality, and a strong commitment to their family members regard-less of any caregiving difficulties. They were proud of their roles asfamily sustainers and nurturers, and were able to express gratitude forthe blessings in their lives. In the face of physical and emotionalchallenges, they presented themselves as strong survivors.

IMPLICATIONS

These grandmothers’ stories have several implications for the hu-man services or health care worker involved with older adults or withHIV-infected children. In fact the confluence of these three elements--being older, caring for a child, and dealing with HIV issues--bring


about a challenge to practitioners who may be more specialized inaging, child welfare, and HIV or health. Clearly special knowledge ofeach group is needed to formulate satisfactory assessments and inter-ventions.These findings highlight the strength of these women and their care

connections that resonate strongly with existing observations regard-ing the resilience of the African-American family and the importanceof kin (Billingsley, 1992; Boyd-Franklin et al., 1995; Hill, 1993;Stack, 1994; Staples & Johnson, 1993). However, as Boyd-Franklinand associates (1995) warn, although older minority caregivers areamong the true heroines of the HIV epidemic, they pay a high emo-tional and physical price for this ‘‘tower of strength’’ role. We cannotbe sure about the extent of the emotional and physical price that thesegrandparents pay for their constant giving. While the ‘‘tower ofstrength’’ characterization of this population is certainly true for themost part, we need to forge opportunities for these heroines to ask for,design, and receive appropriate support. Because they carry on coura-geously, our service systems may be guilty of neglect. The degree anddepth of their burden may not be discovered until they and theirfamilies are overwhelmed and weakened.Helpers in practice and program development roles need to act to

prevent the premature deaths of older HIV-affected caregivers for theirsakes and for the sake of those HIV-infected and HIV-affected chil-dren and adults who need them. For the gerontological practitioner,assessing the family of an older adult requires careful attention toseveral factors. It is important to track the care relationships. Is theolder adult indeed a major caregiver for diverse family members? Thismay present difficulties if the care issue, HIV, is perceived as one thatmay lead to stigma and must not be disclosed. Possibly the HIVrelated issues are secrets within the family. In addition, it is importantto determine if HIV-related caregiving is leading to more or less con-nection with service system, and if the grandparent is obtaining suffi-cient support for his or her own health and emotional needs.The result of this assessment may be a treatment plan that addresses

the grandparent’s needs as well as those of the grandchild and adultchildren. Clearly informal or formal respite and support networks arecritical to sustain these caregivers. These seven stories suggest that itmay be difficult for older caregivers to acknowledge that grandparentcare may constitute stress and burden. They need to be recognized for


their care as a strength, while at the same time be given permission toconsider their own needs so they can maintain both their own healthand their care commitments.The 1995 White House Conference on Aging (WHCA) generated

several recommendations regarding grandparents raising grandchil-dren, such as (1) the establishment of comprehensive social, financial,and legal supports; (2) the removal of legal, legislative, and adminis-trative barriers to the access of existing entitlement programs; (3) in-creased access to programs funded by the Administration on Aging;and (4) the exploration of new funding sources for family services andprofessional training regarding this growing population (WHCA, 1996).These points are relevant for HIV-affected grandparents as well.Gerontological social workers and HIV service providers should

advocate for effective legislative, legal, and organizational responsesto the needs of older HIV-affected caregivers. The current policiesmay cause older caregivers to become more rather than less burdened.For example, there is danger that financial cuts and time limits inTANF and Medicaid will decrease the financial wellbeing of somegrandparent guardian caregivers and their disabled HIV-infected grand-children. New entitlement rules which require that minor parents mustlive with their parents, that all parents must work outside the home,and that paternity disclosure be a prerequisite for receiving aid arepotential disasters for HIV-affected grandparents whose adult childrenare missing or dead.Kinship care policies and practices in child welfare should take into

account the possibility that these caregivers are already overburdened.The strengths and needs of grandmothers should be taken into accountin permanency planning services for HIV-infected parents. Existingprograms should be examined for ways in which services can be moreresponsive to grandparents. The Older Americans’ Act of 1965 (OAA)and the Ryan White Comprehensive AIDS Resources Emergency(CARE) Act of 1990 already have provisions which would benefitolder HIV-affected caregivers; service provision possibilities shouldbe viewed more consistently from the perspective of this population’sneeds.Social service providers should explore ways to offer practical and

emotional support to the caregiving grandparents of ‘‘AIDS orphans,’’such as support groups, information, referrals, transportation, and vol-unteer buddies. We should find ways for HIV-affected grandmothers


to connect with each other so that their isolation and burden can besomewhat eased by having a safe place to vent, grieve, compare sto-ries, and be affirmed. We should strive to facilitate their finding morewell rounded lives so that they are not defined one-dimensionally as‘‘care providers’’ but feel more supported as women and more em-powered to, as Vicki would say, get some life in their lives.

CONCLUSION

These seven vignettes highlight some of the struggles and joys ofHIV-affected African-American grandmothers. These women foughtHIV stigma with unconditional acceptance of their family memberswho were HIV-affected. They balanced the uncertainty of the illnessand the unpredictability of the care system by being stable rocks onwhich others could always depend. They combated isolation withspirituality and generosity. They faced a life-threatening disease bybeing life-affirming and life-enhancing. They were simultaneouslyhonored and burdened by being parents again in their later years.Older minority women as relative caregivers face the multiple

jeopardies of race, ethnicity, poverty, socioeconomic class, age, andgender (Minkler & Stone, 1985; Okazawa-Rey, 1994), even beforeadding the special burdens of having HIV in the family. Much moreinformation is needed about the strengths and needs of this popula-tion. Even though there is recently hopeful news about treatments toprolong life with HIV, the medications are not always accessible topersons with limited resources, and HIV disease is still considered tobe ultimately debilitating and fatal. Therefore, we can expect a con-tinuation of this situation: parents with end-stage HIV will be askingtheir parents to take on child rearing functions, or grandparents willincreasingly find themselves raising grandchildren or other youngrelatives due to the death, illness, or disappearance of a family mem-ber (Boland, Czamiecki, & Haiken, 1992; Levine, 1990; Mellins &Ehrhardt, 1994). HIV-affected grandparent caregivers are often in-visible to the social services and health care community, especially inthe realm of targeted services and responsive policy. Service providersand policy makers must notice these hidden grandparents and offersafe places for them to talk about their isolation, stigma, and grief.Grandparent caregivers have the potential to provide complex caresystems addressing difficult issues including HIV related concerns.


Clearly our service responses should be sensitive to these concernsand provide a supportive structure to explore the issues of grandparentcaregivers, validate their care decisions and help them to meet theirown needs.

AUTHOR NOTE

Cynthia Cannon Poindexter, MSW, PhD, was a research assistant and teachingassistant at the University of Illinois at Chicago (UIC) at the time of this researchproject, and is now Assistant Professor at the Boston University School of SocialWork. Nathan Linsk, MA, PhD, is Principal Investigator of the Midwest AIDSTraining and Education Center and Associate Professor at the Jane Addams Collegeof Social Work at UIC.

NOTES

1. ‘‘HIV’’ stands for ‘‘Human Immunodeficiency Virus.’’ ‘‘HIV-disease’’ refers tothe trajectory of the illness which is caused by this retrovirus, whether symptomaticor asymptomatic. Symptomatic or end-stage HIV-disease is often referred to as‘‘Acquired Immune Deficiency Syndrome’’ (AIDS). ‘‘HIV-affected’’ is the common-ly used term in the field of HIV services and research to designate persons who havepersonally experienced the impact of HIV Disease, either because of being HIV-in-fected or through concern about a loved one who is.

2. This research was funded by the Center for Health Interventions with MinorityElderly (CHIME) at the School of Public Health at the University of Illinois atChicago (UIC), through the National Institute on Aging (Grant # HHS-AG 12042-03).

3. During the interviews, the researchers referred to the respondents by their lastnames and titles (for example, Mrs. Johnson). They and other family members wereassigned first names (pseudonyms) in the transcripts, tables, and in this article for thepurpose of making them more real to the researchers and readers. In transcribing thetapes and in reproducing their remarks, the researchers tried to be true to the words,phrases, styles and pronunciations of the interviewees. The quotations reflect thisattempt. This is done out of a desire to represent them accurately and convey theirtone and affect of their statements.

REFERENCES

AARP (1995). Grandparents as caregivers: Options for improving access to federalpublic benefit programs. Washington, D.C.: Author.

Anderson, G.R. (Ed.). (1990). Courage to Care: Responding to the Crisis of Childrenwith AIDS. Washington, D.C.: Child Welfare League.

Billingsley, A. (1992). Climbing Jacob’s Ladder: the Enduring Legacy of African-American Families. New York: Simon and Schuster.


Boland, M.G., Czamiecki, L., & Haiken, H.J. (1992). Coordination care for childrenwith HIV infection. In M.L. Stuber (Ed.), Children with AIDS. Washington, D.C.:American Psychiatric Press.

Boyd-Franklin, N., Aleman, J., Jean-Gilles, M.M., Lewis, S.Y. (1995). Cultural sen-sitivity and competence. In N. Boyd-Franklin, Steiner, G.L., & Boland, M.G.(Ed.), Children, Families, and HIV/AIDS: Psychosocial and Therapeutic Issues(pp. 53-59). New York, NY: Guilford.

Brabant, S. (1994). An overlooked AIDS affected population: The elderly parent ascaregiver. Journal of Gerontological Social Work, 22(1/2), 131-145.

Brown, G., Mitchell, J., & Williams, S.B. (1992). The African American community.In M.L. Stuber (Ed.), Children with AIDS. Washington, D.C.: American Psychiat-ric Press.

CDC (Centers for Disease Control and Prevention) (December 1994). AIDS surveil-lance report. Atlanta, GA: Author.

Caldwell, M.B., Mascola, L., Smith, W., & Thomas, P. (1992). Biologic, foster, andadoptive parents: Caregivers of children exposed perinatally to Human Immuno-deficiency Virus in the United States. Pediatrics, 90(4), 603-607.

Census, U.S. Bureau of (1991). Current population reports: Marital status and livingarrangement: March 1990. Washington, D.C.: Government Printing Office.

Chalfie, D. (1994). Going it alone: A closer look at grandparents parenting grand-children. Washington, D.C.: AARP.

Crandall, C.S. & Coleman, R. (1992). AIDS-related stigmatization and the disruptionof social relationships. Journal of Social and Personal Relationships, 9(2),163-177.

Draimin, B. (1993). Adolescents in families with AIDS: Growing up with loss. In C.Levine (Ed.), Orphans of the HIV Epidemic. New York, NY: United HospitalFund.

Fair, C.D., Spenser, E.D., & Wiener, L. (1995). Healthy children in families affectedby AIDS: epidemiological and psychosocial considerations. Child and AdolescentSocial Work Journal, 12(June), 165-181.

Forsyth, B. (1995). A pandemic out of control: The epidemiology of AIDS. In S.Geballe, Gruendel, J., & Andiman, W. (Ed.), Forgotten children of the AIDSepidemic (pp. 19-31). New Haven, CT: Yale University Press.

Gutheil, I.A. & Chichen, E.R. (1991). AIDS, older people, and social work. SocialWork, 16(4), 237-244.

Herek, G.M. & Glunt, E.K. (1988). An epidemic of stigma: Public reactions to AIDS.American Psychologist, 43(11), 886-891.

Heslin, P. (1993, June 6-11). When children are the only survivors--parents with AIDS.Paper presented at the International Conference on AIDS.

Hill, R.B. (1993). Research on the African-American family. Westport, Connecticut:Auburn House.

Jenkins, B. (1992). AIDS/HIV epidemics in the black community. In R.L. Braithwaite,& Taylor, S.E. (Eds.), Health issues in the black community. San Francisco, CA:Jossey-Bass.

Joslin, D. (1995). Older adults as caregivers in the HIV/AIDS epidemic. Coalition onAIDS in Passaid County newsletter, Winter.


Lang, N. (1991). Stigma, self-esteem, and depression: Psychosocial responses to risk ofAIDS. Human Organization, 50(1), 66-72.

Laryea, M. & Gien, L. (1993). The impact of HIV-positive diagnosis on the individual,Part 1: Stigma, rejection, and loneliness. Clinical Nursing Residency, 2(3), 245-266.

Levine, C. (1990). AIDS and the changing concept of family. The Milbank Quarterly,68(1), 33-58.

Levine, C. (1993). Orphans of the HIV epidemic. New York, NY: United Hospital Fund.Levine, C. (1995a). In whose care and custody? Orphans of the HIV epidemic. AIDS

Clinical Care, 7(10), 83.Levine, C. (1995b). Today’s challenges, tomorrow’s dilemmas. In S. Geballe, Gruen-

del, J., & Andiman, W. (Ed.), Forgotten children of the AIDS epidemic (pp.190-204). New Haven, CT: Yale University Press.

Levine, C. & Dane, B. (1993). A death in the family: Orphans of the HIV epidemic.New York, NY: United Hospital Fund.

Levine-Perkell, J. (1996). Caregiving Issues. In K.M. Nokes (Ed.),HIV/AIDS and theolder adult. Washington, D.C.: Taylor and Francis.

Lofland, J. & Lofland, H. (1995). Analyzing social settings. (3rd ed.): Wadsworth.Longo, M.B., Sposs, J.A., & Locke, A.M. (1990). Identifying major concerns of

persons with Acquired Immunodeficiency Syndrome: A replication. ClinicalNurse Specialist, 4(1), 21-26.

Magana, J.R. & Magana, H.A. (1992). Mexican-Latino children. In M.L. Stuber(Ed.), Children with AIDS. Washington, D.C.: American Psychiatric Press.

McGinn, F. (1996). The plight of rural parents caring for adult children with HIV.Families in Society, 77(May), 269-278.

McKinlay, J.B., Skinner, K., Riley, J.W., & Zablotsky, D. (1993). On the relevance ofsocial science concepts and perspectives. In M. W. Riley, Ory, M.G., & Zablotsky,D. (Ed.), AIDS in an aging society. New York, NY: Springer.

Mellins, C.A. & Ehrhardt, A.A. (1994). Families affected by pediatric AcquiredImmunodeficiency Syndrome: Sources of stress and coping. Journal of Develop-mental and Behavioral Pediatrics, 15(3), S54-S60.

Michaels, D. & Levine, C. (1992). Estimates of the number of motherless youthorphaned by AIDS in the United States. Journal of the American Medical Associ-ation, 268(24), 3456-3461.

Michaels, D. & Levine, C. (1993). The youngest survivors: Estimates of the numberof motherless youth orphaned by AIDS in New York City. In C. Levine (Ed.),Orphans of the HIV Epidemic. New York, NY: United Hospital Fund.

Minkler, M. & Roe, K.M. (1993). Grandmothers as caregivers: Raising children ofthe crack cocaine epidemic. Newbury Park, CA: Sage.

Minkler, M. & Stone, R. (1985). The feminization of poverty and older women. TheGerontologist, 25(4), 351-357.

Moneyham, L., Seals, B., Demi, A., Sowell, R., Cohen, L., Guillory, J. (1995, Febru-ary 22-24). Living with HIV: Issues of stigma and disclosure in women infectedwith HIV, Atlanta, GA.

Mullen, F. (1995). A tangled web: Public benefits, grandparents, and grandchildren.Washington, D.C.: AARP.


Ogu, C. &Wolfe, L.R. (1994).Midlife and older women and HIV/AIDS. Washington,D.C.: AARP.

Okazawa-Rey, M. (1994). Grandparents who care: An empowerment model of healthcare. In A. Dula & Goering, S. (Eds.), ‘‘It just ain’t fair’’ The ethics of health careof African Americans (pp. 221-233): Praeger.

Perreault, M., Reidy, M., Taggart, M.E., Richard, L., & Savard, N. (1992, July19-24). Needs assessment of natural caregivers of people with HIV or AIDS.Paper presented at the International Conference on AIDS.

Reidy, M., Taggart, M.E., Asselin, L. (1991). Psychosocial needs expressed by thenatural caregivers of HIV infected children. AIDS Care, 3(3), 331-343.

Schable, B., Diaz, T., Chu, S.Y., & Caldwell, M.B. (1995). Who are the primarycaretakers of children born to HIV-infected mothers? Pediatrics, 95(4), 511-515.

Stack, C.B. (1974). All Our Kin. New York, NY: Harper and Row.Staples, R. & Johnson, L.B. (1993). Black Families at the Crossroads. San Francisco,

CA: Jossey-Bass.Thomas, S.B. & Quinn, S.C. (1994). The AIDS epidemic and the African-American

community: Toward an ethical framework for service delivery. In A. Dula, &Goering, S. (Eds.), ‘‘It just ain’t fair’’: The ethics of health care for AfricanAmericans (pp. 75-89): Praeger.

WHCA (White House Conference on Aging) (1996). Final Report: 1995 WhiteHouse Conference on Aging. Washington, D.C.: Author.

IDENTIFYING REFERENCES

Poindexter, C. (1997). Stigma and support as experienced by HIV-affected olderminority caregivers. Dissertation, University of Illinois at Chicago.

Poindexter, C. & Linsk, N.L. (1998a) (Accepted). HIV-related stigma in the lives of asample of HIV-affected older minority caregivers. Social Work.

Linsk, N. & Poindexter, C. (1998b) (Accepted). Minority elders as caregivers forHIV-infected persons: Reasons for caring. Journal of Applied Gerontology.

Poindexter, C., Linsk, N.L., & Warner, S. (1998c) (Accepted). ‘‘He listens and nevergossips:’’ Spiritual coping without church support among older, predominantlyAfrican-American caregivers of persons with HIV. Review of Religious Research.

“i'm just glad that i'm here”

Documents