Psychosomatics 42:497-503, December 2001
© 2001 The Academy of Psychosomatic Medicine
Understanding the Psychosocial Needs of HIV-Positive Women
A Qualitative Study
Kathleen Morrow, Ph.D.,
Theresa Costello, Ph.D., and
Robert Boland, M.D.
Received January 31, 2001; revised July 10, 2001; accepted July 17, 2001. From the Centers for Behavioral and Preventive Medicine, Brown Medical School, and the Miriam Hospital, a Lifespan Partner. Address correspondence and reprint requests to Dr. Morrow, Centers for Behavioral & Preventive Medicine, Brown Medical School and The Miriam Hospital, Lifespan Academic Medical Center, One Hoppin Street, Coro Building, Suite 5000 Providence, RI 02903. E-mail: kmorrow{at}lifespan.org
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ABSTRACT
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The purpose of this study was to engage women with HIV disease in a qualitative needs assessment for psychological services. Focus groups/interviews were held to develop an understanding of these women's experiences and perceptions of services needed within a support group format. Results support women's interest in and perceived need for psychosocial group intervention and provide feedback on how to structure groups, including considerations for the facilitator, concrete barriers to address, and attention to group attributes and guidelines. These results support ongoing development of psychosocial support groups for women with HIV disease and further exploration of the efficacy of group models for the diverse subgroups of women with HIV/AIDS.
Key Words: Treatment • AIDS/HIV • Women
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INTRODUCTION
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HIV disease continues to be an escalating health problem throughout the world. The proportion of women with HIV disease has increased drastically, more than tripling in the United States (i.e., reaching 23% of AIDS cases and 32% of HIV cases in 1999) and accounting for 47% of all HIV/AIDS cases worldwide by the end of 2000.1–4 Shifts in the pattern of the HIV/AIDS epidemic require health care providers to recognize and address the needs of a growing population of women faced with incorporating the diagnosis and treatment of HIV into their lives. As HIV disease in the United States has shifted from one seen as imminently fatal to one with a more chronic disease course,5,6 the psychological adjustment of people living with HIV/AIDS has also come to be understood as fluctuating over time and circumstances.5,7–9
Although less work has been conducted on the psychological adjustment of women with HIV/AIDS, research has begun to examine their specific needs. Kaplan et al.10 examined the prevalence of psychological distress in black, white, and Hispanic women diagnosed with HIV disease in the United States. Thirty-eight percent of the women screened positive for a depressive disorder, with 13.4% of this group reporting moderate to high levels of depressive symptomatology. Additionally, 43% of the women in their sample screened positive for an anxiety disorder. Recent data from the HIV Epidemiological Research Study, a prospective investigation of the natural course of HIV in women, documented depression in up to 62% of HIV-positive women participating in the study at baseline. Depression scores over time in this 4.5-year study were significantly related to CD4 (t-lymphocyte cell) count and viral load and to HIV-related symptoms.11 Results such as these indicate that women diagnosed with HIV disease experience some of the same psychiatric concerns as men with this disease and emphasize their need for psychological treatment and support.
Although not all data agree that women with HIV disease are at greater risk of psychological/psychiatric distress leading to disorganizing mental health disorders,12,13 much of the data continue to point to a need for psychosocial adjustment and support. For instance, a continued investigation of newly diagnosed hypoactive sexual desire disorder in women with HIV was reported by Brown and Rundell12 and later by Brown et al.13 The latter authors hypothesized that this dysfunction may be a result of a number of different variables in a woman's life, including the overall stress of adverse life events, negative self-image, fear of transmitting HIV to others, guilt, anger, and compliance with medical establishment expectations that HIV-positive women remain abstinent. These data support our efforts to understand the needs of HIV-positive women from their perspectives and within the context of their lives. Variables other than HIV must be considered when working with women, including, for example, race/ethnicity, marital/family status, place/type of residence (e.g., inner city vs. suburban setting), financial status, and drug use history and its associated stressors.
Despite the variability in women's demographic and social variables that may influence how women respond to HIV, research continues to delineate psychosocial concerns common to women with HIV disease. These concerns include worries about the impact of the illness on loved ones, finances, life goals, and pregnancy and child-rearing.5,14 These studies point to the unique needs of women with HIV disease and emphasize the need for gender-specific treatment and support.
A recent review of the literature by Spirig8 concluded that support groups can be useful, effective, and helpful in intervening with people with HIV/AIDS. Psychosocial support groups have been suggested as the appropriate intervention modality for increasing the quality of life in people with HIV/AIDS,14 primarily because of the reduced level of social support available to this population as a result of stigma, bereavement, and loss.8 Psychosocial group interventions have been shown to be effective in reducing symptoms of depression, hostility, and somatization.5,8,16 One study showed that social support groups, in contrast to a cognitive behavioral group intervention, also produce a reduction in overall psychiatric symptoms and anxiety.14
At this point in the epidemic, attention is being turned to the implementation of effective psychosocial interventions for HIV-positive women. Further work is needed to elucidate how support groups specifically can effectively address the needs of women with HIV/AIDS.8 Qualitative research strategies, and focus groups in particular, have been recommended as the method of choice in order to further clarify the perceived needs of women with HIV disease and their perceptions of acceptable means by which to meet these needs.8,17–20
The purpose of the present study was to engage women with HIV disease in a needs assessment for psychological services in their medical clinic. The goal was to develop an understanding of their experiences and perceptions of services needed within a support group format. A focus group/focused interview format was used to develop this understanding and to form a partnership with these women in order to prepare to implement these tailored services.
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METHODS
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HIV-positive women were recruited through flyers and provider referrals in an infectious disease primary care setting. Twenty-nine women were ultimately enrolled. The mean age of the participants was 37.4 years (range 24–54 years). Our sample included 4 black women (14%), 19 white women (66%), 2 Hispanic women (7%), and 4 women of unknown/unreported ethnicity (14%). Thirteen women in our sample were single (45%), 2 were married (7%), 3 were divorced (10%), 3 were widowed (10%), and 8 were of unknown/unreported marital status (28%). Twelve women had one or more children (41%); 8 had no children (28%). The motherhood status of the remaining 9 women (31%) was not reported. Risk status identified for HIV infection by our sample included intravenous drug use (12 women; 41%) and heterosexual transmission (10 women; 34%). The risk group status of 7 participants was unknown (24%). Twenty-five women took part in five focus groups. Four women were interviewed individually. Focus groups were the primary mode of data collection; focused interviews were used when circumstances warranted (e.g., if women were unable to travel to the group site or too ill to participate in a group). Focus groups and interviews were facilitated by a postdoctoral fellow in clinical psychology.
Agenda themes in data collection included past counseling experiences, obstacles to attendance, needs to be addressed in a support group setting, issues related to group format and scheduling, and suggested strategies/alternatives for overcoming concrete needs and barriers.
All groups and interviews were audiotaped for later transcription. Tapes were transcribed and reviewed by the facilitator for accuracy and completeness. Two independent raters coded the transcripts to identify and code themes expressed by the participants regarding their experiences with, and expectations for, group services.
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RESULTS
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The themes identified included 1) the importance of confidentiality within a group setting, 2) the contributions of other group members (including commonalities and drug use as a barrier), 3) the role of the group facilitator, 4) group format and content preferences, and 5) concrete barriers to group participation. Each theme will be discussed.
Confidentiality
Participants consistently emphasized the importance of being able to trust in the confidential nature of the group in order to engage freely. They reported concerns that other members would discuss issues raised within group outside of that setting. Additionally, some feared that their group attendance would reveal their HIV status to others whom they would prefer not to know. The women noted that this fear is related to the stigma attached to HIV/AIDS: "They group you— ‘well they must have done something to deserve this.’"
Despite these concerns about confidentiality, the participants acknowledged that it is possible to feel secure in a group and to trust in its confidential nature. One woman recounted a previous group experience: "The first group I joined...I was scared.... I know these girls here and I don't know how they're going to react when they see me.... After the group we would see each other around town and... we just talk like normal friends, and we would mention nothing that had to do with our condition and it became very easy."
The participants considered how to establish this sense of trust in the confidentiality of a group. Some felt that their participation simply had to be guided by their own sense of comfort. For example, "I put out what I want to put out, what I feel comfortable talking about." In this way, the participants expressed a willingness to take responsibility for sharing in a group and monitoring their own sense of comfort and safety in doing so.
Most of the participants felt strongly that rules about confidentiality had to be made concrete in a group setting in order to emphasize its importance and ensure their comfort. Participants felt it would be very important to have all potential members of a psychosocial support group sign a confidentiality agreement, a document attesting to one's agreement to not discuss personal information about other group members outside of the group. Some participants felt that such a document could be general in nature, while others felt it would be necessary to specifically remind group members to not reveal the serostatus of members. Participants also suggested that the issue of confidentiality be raised on a regular basis in order to remind group members of their agreement.
Participants also grappled with the issue of how to manage a situation in which a group member does break confidentiality. Options considered included giving a warning, asking the individual to leave the group and not return, having the group facilitator address the issue outside of the group, and having all group members confront the individual within the group setting and eventually vote on whether that individual may remain in group. The commonality among these options is a strong active stance taken to protect confidentiality. The participants found safety in this pro-active protection of confidentiality.
Contributions of Fellow Group Members
Commonalities. The participants reported that relationships with other group members can be very powerful and hold the potential for the development of strong bonds and emotional responsibility to each other. One way in which participants felt they could support each other was to suggest having a rule that when a member needed to be absent from a group session, she should call the facilitator and explain so that negative affect, such as worry by other group members, would be reduced.
A powerful aspect of a group experience noted was the role of sharing common experiences in order to bolster each other's ability to manage stressful circumstances. For example, participants noted, "The best thing about the support is to have people there who understand." "I made the best of it by observing behaviors that I didn't want to adopt when I came to that point." Strength may also be derived from helping others to cope: "trying to help other people to not go through what I went through. You know, that helps me to cope." Another participant stated, "Put everybody together because we've all got to deal with this." And still another participant noted, "You get the chance to talk to other people and find out how they are dealing with their HIV status.... You think that you're going through it all alone, but someone else is going through the same thing or something similar and can help you out with it." When asked what would keep them coming to a psychosocial support group, one participant answered, "There needs to be other people who share the same problem and experience... talking about issues that a doctor or nurse cannot answer." And another added, "If I have this question, then I have to go to the group because I've got to know how I can deal with this. And knowing that you're going to go there and you're going to get something out of it keeps it interesting, and you'll show up."
The sharing considered valuable went beyond HIV/AIDS-specific information to include how HIV/AIDS impacts areas of their lives beyond physical health, such as their sex lives, relationships with partners and family members, coping skills, death and dying issues, and how to put "meaning" into their lives. Additionally, some of the participants reported that they would want a support group for mothers who have lost children. "I might learn something through them. I might learn how to cope with this better." Their voices emphasized that they are women with full lives and cannot be reduced simply to a medical diagnosis.
Participants considered whether psychosocial support groups for women with HIV disease should be separated either by risk group/source of transmission or by level of symptom expression/disease progression. Predominantly, participants did not want support groups to be segregated via transmission source. "‘Separating the groups makes a statement. It makes a silent statement.’ [Facilitator:] ‘A negative statement?’ ‘Yeah.’" "I think that that part [disease transmission] shouldn't be discussed because we're just infected; if you caught it from drugs or you got it through sex, the main topic is we have it."
Participants were less unified in considering whether symptomatic and asymptomatic women should attend the same group. As one woman noted, "I do have a problem with that. The first group that I went to, they are all dead.... For me it's difficult to be in a room with somebody who is at the point of ‘I want to give up’ when I am far away from that point.... I think it's good to get information about what other people are doing about medications and all that, but for a support group, I think that everyone should be at the same stage of the virus." However, other participants expressed a belief that although it may be difficult to see someone at an advanced stage of the disease, this type of sharing does offer a chance for learning. "It could be depressing to see somebody like that...but it's also informative because you see where they've been and what they know." "I think it's really important to have every stage of the disease from the beginning to end because say you have a group of us—we all look healthy, but eventually somebody's going to get sick. Does that mean that person can't come into this group anymore because they're too sick to be in the group?" "I think we all need each other regardless of where we're at." "I've always liked support groups.... When I can walk into a room and see somebody else who's HIV-positive, whether they're not dealing with it or dealing with it very well, I think that that's good because I'll either feed off of it or I'll feed into it, and that makes me feel good.... It's a great place for all women to get information."
Drug Use as a Barrier. Active substance abuse by group members was noted as a barrier to positive group experiences. A number of the participants reported that they do not believe support group services should be offered to women who actively abuse drugs or alcohol because such abuse can limit one's ability to benefit from a group intervention. One woman stated, "I don't even think there should be a group for people that are still using because until they come around and stop using, they're not focusing, they're not thinking right."
Other participants expressed concern not about the women who are abusing substances but about their impact on other group members. As the participants noted, "The bottom line is that you break down the trust [when you are under the influence]." "What I saw happening [in past groups] was some people were coming in using [drugs] and they weren't keeping the confidentiality of the group.... And that made other people in the group not want to participate because they had no privacy.... Didn't feel safe at all..."
Participants also noted that having a woman who is an active substance abuser in the same group with other women who are in recovery from substance abuse could act as a trigger. "I would feel kind of uncomfortable because I'm a recovering addict.... I don't think anyone would want to be put in that situation because you're looking at that person high, and you know you're fighting to struggle with your staying clean."
The participants also expressed concern about women on methadone maintenance participating in psychosocial support groups. Some participants felt it would be hard to have methadone maintenance patients in a group because of the chance that they are "abusing their dose" or continuing other drug use. Other women were more conflicted: "It's hard, because a person cannot be without methadone, it's a treatment.... When you're on methadone you learn to work with it, you learn to live with it daily."
There was debate among the participants about whether there should be separate groups for women who are in recovery or never used and women who are actively using or on methadone. Some of the participants were in favor of separating groups. For example, "I think the people that are clean for over a year should be able to have their own group...because it's not fair to the people that have never used and are clean for me to be there. I don't think that I should be in a group with them because of the fact that I'm a drug user.... And I don't think that I'll feel comfortable in a group with them because, really, I don't have anything I can relate with them except for the HIV stuff."
Participants were able to make other suggestions about managing active substance abusers in a group setting. These included urine testing of suspected active users, having the group leader be in contact with methadone maintenance and other treatment programs to monitor clients' progress, and a specific rule that members are not allowed to come to group under the influence of any substance other than prescribed medications.
Group Facilitator
Participants expressed a preference for an active group facilitator and an expectation that he or she would take a proactive and protective stance toward the group as a whole, as well as toward its individual members. It is the group facilitator's responsibility to safeguard confidentiality by establishing firm rules and following up with members who may have strayed from these rules. Also, he or she is to safeguard a rule about not attending group sessions under the influence of any substance other than prescribed medication. The facilitator must also look after the member who does come to group under the influence of drugs or alcohol by following up with her to ensure her well-being and safety and to respond to her needs.
Some participants expressed a preference to have a group facilitator who would follow up with members who miss sessions for any reason. According to the participants, this holds the double advantage of helping the individual—that is, not "letting her fall,"—and discovering whether there is a problem in the group itself, a problem that can then be addressed and remedied. This type of action on the part of a group facilitator would also show the group that the leader is forming a partnership with the members, rather than adopting an "expert stance"; as one member put it, "Say, ‘Can we meet and discuss why you're not here anymore? Tell me what you didn't like.’ But don't let them fall...because some of these counselors feel as though. ‘Well I'm the educated one, I know these things, I know what you need.’ Well, no you don't."
The participants recognized that their expectations for a group facilitator are demanding. As such, some of the participants recommended that psychosocial groups be cofacilitated by two leaders. As one woman noted, "I think it's best to have two people because it might become too much for just you. You know you might have to counsel someone by themselves because of something that might happen, and just you being there—I don't think that's enough."
Many of the women expressed a preference for female group facilitators because of an increased sense of comfort discussing issues of sex and sexuality with another woman rather than a man. They also expressed a preference for a group leader who would not take on a doctor-patient relationship, but who would act "normal" in group and treat group members "like a normal person." Participants expressed a preference for a group facilitator who would interact with them in a respectful manner, providing "empathy and sympathy, being patient." The participants felt that these qualities would enable the participants to engage more fully in a group setting.
The participants debated the pros and cons of having a group facilitator who is also HIV-positive. As one woman noted, "I think that someone who has HIV is better because...the person who lives with this virus, we know how we feel about it." Another participant concurred, "it's always good to have somebody who's been through it and knows where I'm at." Other participants noted that it was less necessary for a facilitator to be HIV-positive, as long as the person was "up to speed" about HIV/AIDS-related issues. The participants were clear that they did not want to spend group time educating a group facilitator but instead wanted the group to be for them, with a facilitator who could follow, understand, and empathize with their experiences, whether that leader was HIV-positive or not.
Group Format and Content
Participants were asked to consider how a psychosocial support group should be structured in order to enable them to achieve maximum benefit. They recognized that prior to considering the structure of a group, it is necessary to consider the readiness of the participants in that group. The women reported that as potential participants in a group, they would have to feel a personal sense of readiness to engage in the group in order for them to benefit. According to them, this sense of readiness has to do with acceptance of the presence of HIV in one's life. As one woman noted, "Some people are still in denial...because they're not dealing with it, and coming to group is saying, ‘okay, I'm HIV-positive.’" Other participants noted that the sense of readiness may emerge from knowing what issues and topics will be addressed in a particular group or session and figuring out how that relates to one's own life. In this way the participants reported that it is possible to be at various stages of "readiness": able to address one topic in a particular session but not another topic until a different session.
In general, the participants reported that they wanted two things from a group: general support and education/information on a variety of topics. A strong support component in a group would allow them to learn from each other, benefit from each other's experiences, and help each other through challenges. An informational/educational component would expose them to topics they felt were important. These topics included advances in medication and treatment of HIV/AIDS; managing emotional stress and/or suicidal thoughts and developing effective coping skills; women's health issues, such as safer sex, sleep, hygiene, communication skills, nutrition, exercise, and relaxation; issues of daily living with HIV/AIDS; and legal topics, including end-of-life issues such as living wills and do-not-resuscitate orders. The participants also suggested that devoting time in psychosocial groups to issues of spirituality would be beneficial. They suggested that both components, support and education, should be included in each session, with flexibility in the timing to provide more support to members if needed.
Concrete Barriers to Group Participation
The participants reported that they often face concrete barriers to participating in a psychosocial support group even when they are in a state of "readiness" to participate and the group is addressing topics in which they are particularly interested. These obstacles include child care and transportation, as well as lack of finances to overcome these hurdles. Scheduling conflicts may also be a potential barrier, requiring facilitators to schedule groups at times that fit participants' lives, such as whether they are working, whether their children are in school, and whether the participants are reliant on public transportation. Finally, the participants noted that the state of one's physical health is a factor in determining group participation and attendance. One woman noted, "Being sick, you can't help that, but that might be a reason why someone wouldn't show."
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DISCUSSION
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The current data provide support for previous research on the need for psychological interventions for women with HIV disease8,9,11 and for developing a partnership with potential participants in such services. This information will allow women to help clinicians plan an intervention to directly address their psychosocial and educational needs and to structure the intervention in a way that best meets their logistical and lifestyle needs. Conducting a local needs assessment prior to initiating a clinical service in this population will provide information on specific topics relevant to the women for whom the services are directed. A needs assessment will also provide specific information on what issues need to be addressed in order to enable the women to make effective use of the services.
Previous research has suggested the utility of support group services for individuals with HIV disease.5 To date, the bulk of empirical investigations on the efficacy of support group services in the HIV population have been conducted with gay men.8 The current research has found support for such an intervention with women who live with HIV disease, a group that has been rarely studied empirically.6 What is necessary at the present time is a controlled, empirical investigation of the efficacy of support group services for women with HIV. It is also important to recognize the diversity of women within this population, including not only women from various racial/ethnic backgrounds but women who also have dual infections and other comorbid medical problems. For example, there is a growing population of individuals coinfected with HIV and the Hepatitis C virus.21 As Spirig8 has suggested, it is necessary to examine the feasibility, sustainability, and efficacy of group models for the diverse subgroups of people with HIV/AIDS.
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ACKNOWLEDGMENTS
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The authors thank David Abrams, Ph.D., and Raymond Niaura, Ph.D., for their careful feedback and input throughout this project. The authors also thank the staff of the Miriam Hospital Immunology Clinic under the direction of Timothy P. Flanigan, M.D., and Susan Cu-Uvin, M.D., for their support of this project. Most importantly, the authors express gratitude to the women who participated in this project for their careful thoughts and clear opinions. This research was funded by a Brown University internal grant through the Department of Psychiatry and Human Behavior.
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REFERENCES
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Center for Disease Control and Prevention (CDC): HIV/AIDS Among U.S. Women: Minority and Young Women at Continuing Risk, 1999. http://www.cdc.gov/nchstp/hiv_aids/pubs/facts/women.htm (accessed January 15, 2001)
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Center for Disease Control and Prevention (CDC): HIV/AIDS Surveillance Report: Midyear Edition, Volume 11, No. 1., 1999. http://www.cdc.gov/nchstp/hiv_aids/stats/hasr1101 (accessed January 15, 2001)
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Center for Disease Control and Prevention (CDC): HIV/AIDS Surveillance Report: Year-End Edition, Volume 11, No. 2., 1999. http://www.cdc.gov/hiv/stats/hasr1102 (accessed January 15, 2001)
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Center for Disease Control and Prevention (CDC): Basic Statistics: International Statistics, 2001. http://www.cdc.gov/hiv/stats/internat.htm (accessed June 25, 2001)
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Kelly JA: Group psychotherapy for persons with HIV and AIDS-related illnesses. Int J Group Psychother 1998; 48:143-162[Medline]
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Heckman TG, Somlai AM, Sikkema KJ, et al: Psychosocial predictors of life satisfaction among persons living with HIV infection and AIDS. J Assoc Nurses AIDS Care 1997; 8:21-30
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Ickovics JR, Hamburger ME, Vlahov D, et al: Mortality, CD4 cell count decline, and depressive symptoms among HIV-seropositive women: longitudinal analysis from the HIV epidemiology research study. J Am Med Assoc 2001; 285:1466-1474[Abstract/Free Full Text]
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Brown GR, Kendall S, Ledsky R: Sexual dysfunction in HIV-seropositive women without AIDS, in HIV/AIDS and Sexuality, edited by Ross MW. Binghamtom, NY, Haworth, 1995, pp. 73-98
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Coleman CL, Berry GL: Coping strategies, psychological adjustment, and AIDS-related concerns of women with HIV. Paper presented at the 102nd Annual Convention of the American Psychological Association, Los Angeles, CA, 1994
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Nunes JA, Raymond SJ, Nicholas PK, et al: Social support, quality of life, immune function, and health in persons living with HIV. Journal of Holistic Nursing 1995; 13:174-198
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Kelly JA, Murphy DA, Bahr R, et al: Outcome of cognitive-behavioral and support group brief therapies for depressed, HIV-infected persons. Am J Psychiatry 1993; 150:1679-1686[Abstract/Free Full Text]
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Bibace R: A partnership ideal, in Partnerships in Clinical, Educational and Research Contexts, edited by Bibace R, Dillon JJ, Dowds BN. Norwood, NJ, Ablex Publishing, in press
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Bibace R: Piaget's "clinical method" revisited from the perspective of the "partnership" model. Clark University, 1997
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Bibace R, Bush PJ, Dillon J, et al: "What children want to know about medicine." Paper presented at USP Open Conference on "Children and Medicines: Information Isn't Just for Grownups." September 29-October 1, 1996. Reston, Va
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Dowds BN, Davis M, Bibace R: Focus groups as a means for eliciting the expertise of research participants, in Partnerships in Clinical, Educational and Research Contexts, edited by Bibace R, Dillon JJ, Dowds BN. Norwood, NJ, Ablex Publishing, in press
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Dietrich DT: Hepatitis C virus and human immunodeficiency virus: clinical issues in coinfection. Am J Med 1999; 107:79S-84S
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ABSTRACT
INTRODUCTION
